Sorry it took so long Sandy...but you have once again been archived...bren
Bren,
No apology necessary. Thanks for all the hard work you and Nan do for all of us here. Miss you turkey! Hope Bridging the Borders is the best ever. Have fun...we love you...
faith and hope,
Sandy
fig's early morning ramblings ! "Poetry from my pd head" ?? maybe .. haha as i sit here with a smile on my face ! i would like to share this with the whole human race !
i have pd you see ! but it don't bother me ! bother me ! bother me !
i'm fresh out of bed ! ramblin on with my pd head !
searchin for friends that i have grown to love! who at times give me a gentle shove !
we share our lives as we are as one ! and don't give up till our job is done!
my legacy is yet to come bear ! but it's my hope ....fig came to share !
i pass my smile from this pd head! hopefully until i am dead !
so many things that i have missed! makes one angered and pissed !
there is time left you see ! for me and you, my extended family !
a song is born to help our cause ! my bro wrote it ..just because !
he is not one of us , you see ! but yet he wants to be family !
God has given this opportunity ! to help folks like you and me !
while most are all snuggled in bed ! these words flow from this pd head !
i am not finished ! its plain to see ! got a life still ahead of me !
THANK YOU LORD FOR THIS OPPORTUNITY !
submitted by Mr.Fig
Hi Sandy. Well, just got home from being in the hospital again. Was admitted on Easter Sunday, 4th time since the 1st of March. This time I was admitted for Congestive Heart Failure. It just doesn't seem to ever end. I haven't worked in months and at this point am about to lose everything including my house. I'm not writing this for sympathy but just felt like I needed to get it off my chest. I know that everyone has problems financial probably being the biggest for all of us. But I just want to say that after working in health care for 15 years I am finally seeing the big picture which is that people like you and me that have worked all their life don't have a fighting chance in our system. It really is a dog eat dog world out there and you are either rich or poor, but if you fall in between you are just plain out of luck. I am really at the point that I don't know what to do anymore. If anyone has any suggestions or words of wisdom I would sure appreciate it. I know that the good Lord is always there for us and will never let us down but sometimes I wonder just how much a person can take. Enough whining. I am just so glad to be back home to my 2 kids (dog & cat that is) and my wonderful PD family. Its just great to kick back on the porch for awhile and let the world go by.
Sara
Sara,
My dear, I am so sorry to hear about your latest trip to the hospital. Yes, Sara, I understand how you feel. It is a dog eat dog world out there. I wish I could come to you and sit with you personally to hold your hand and help you get through this. Sara, have you checked into anything the county can or might be able to help you with? It takes a heck of a lot of paperwork. When I finally made a decision to leave my husband....I had to literally start at the bottom of the barrell and dig my way out. It smelt like poop the whole way...but Sara..things are sweeter now than ever before. No, I do not have insurance except for Medicare. That does not pay for my meds. But because of the cost of my meds I get food stamps. Even that is better than living with a husband that as a truck driver brought in nearly 40,000 dollars a year...and I still did not have a guarantee that he would get or give what I needed. I live in an apartment that is HUD provided. I pay rent by what I draw from Social Security minus my medical expenses. I am in no way comparing my situation to yours. Sara, honey, I am here...I will continue to be here..when you need to unload....well, you just unload. Diane, Luvstosew has a career background in Social Work so she may offer some words of encouragement and wisdom. You are never alone. We all are with you my friend. My e-mail is sassypwp@statesville.net . Could you send me your e-mail addy and your phone number and I can send you mine.....Hang in there sweetie...
faith and hope,
Sandy
Sara, you came to the right place! Sandy and the rest of us are here for you! This is my email address; dkerbow@earthlink.net. Give me a buzz and lets see what options are available for you. Maybe together we can brainstorm and find you help. Us parkies got to stick together. lots of hugs, Luvstosew
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hi sandy-- did you ever why when an elderly person has pd, people refer to them as "suffering from" pd. whereas, a young onset pd'ers are referred to as "having it"? why is that? dont't they see the suffering we go through as well? i'm not tryig to feel sorry for myself (well, maybe a bit), but i am so sick of this pd stuff. i wish someone could take it away from all of us. at night while praying, i pray for all of us to gett the strength and courage to make it through the next day.
sandy, bestt of luck to you as you begin your new life on your own. i admire your courage. darrell, hang in there--i understand your frustration and fear.
kathleen 4/19/01
Dear Sandy, Thank you for writing! I am 53 and have been diagnosed with PD for just over 1 year. My husband and I go to a wonderful support group 1/mo. We're by far the youngest members which startled and distressed me. Some of our group are not well and I often wonder if that will be my fate too. Happily I found PLWP on Yahoo, joined, and discovered that its origins are in my city!! Very exciting!! I received a few replies to my message letting me know that my age is not among the youngest. I find some comfort in that. Now you have written me and I see your age of onset and I think - Knock it off, Judy, and get on with it. Actually I am usually an upbeat person and certainly don't want to lose that quality. So within just 3 or 4 days my PD circle of awareness and people has grown immensely. What a wonderful and powerful thing!! So thank you for writing and offering on your web site words of encouragement for those of us who need them. Judy
Kathleen and Judy,
I cannot begin to express what your words in your posts have meant to me today. I am really battling with horrible pain. Simply by reaching out and sharing here on the Porch you have made my day a brighter day.
Kathleen it is okay to allow yourself those hohummm, droopy days. You too Judy. If we did not have them we would not be human. We all have to deal with pd in our own way. The thing that is neat about PLWP is that we allow and accept each other's choices of how they live with pd. This helps to shed some light onto a path that can seem dark at times.
As far as the young w/ pd. I truly believe that what has seemed like the norm for so long (older people having PD) takes people longer to see that there is suffering in the young with PD. The good thing is, through getting awareness out there about pd and the young will help others obtain more knowledge and knowledge is power.
I hope I am making some sense...sometimes it is hard to string thoughts together while trying to cope with the pain. I am so glad you have found you a rocking chair on the Porch and are enjoying the visit. Thanks so much for your kind and encouraging words today. Come back often.....
faith and hope, Sandy
Hi ,I'm new to this site and full of questions.My husband has had Parkinsons since 1989,Im so confused on all the information I get from Various Doc's.I just found this site and was impressed with all the people out there living with P.D.I would like to know if any one out there has any info on what to expect in the later stages of this? Everyday is differant and we never know what to expect.Thanks Sandi
Hello Sandi,
I can recommend the place I first sought information so many years ago....
The American Parkinson's Disease Association, Inc. 1250 HYALAN BLVD. STATEN ISLAND, NY 10305
1-800-223-2732
You can call this toll free number and express what you are wanting information on. They will send it to you free of charge.
I also recommend this webpage...click and go: http://www.pdindex.com/ or copy the address to your address window on your favorite search engine.
Please be encouraged...I will help you whatever way that I can. If this does not give you some answers come back and ask for what you could not find.
Sandi, I will tell you this, each individual with PD is affected differently. We all have different stages and the length from one stage to the next. Take me for instance..I am in my 21st year with PD...when my meds are working good I am in between stage 2 & 3. Without any medications whatsoever I would be in stage 5 needing critical health care.
You do not stand alone Sandi. We are here...for you and your husband. Just let me know what ya need. You will notice the months that have already been archived...take your time and look through and read.
I have also copied and pasted some info on the PIEN. It is a mailing list that you can subscribe to. You can always ask a question and many, many people will offer info.
Subject: P-I-E-N-O Parkinsn Mail Options Made Easier
> CHANGING YOUR PARKINSN MAIL OPTIONS: > > http://parkinsons-information-exchange-network-online.com > > Use the bottom link on the left that says, Parkinsn List Mail Management > Options. Follow the directions. > > > **************************************************************************** > ******* > > Perhaps you like others would like to make the Parkinsn List Online their > starting page in their browser so list mail is the first thing they see > when they start Internet Explorer or Netscape. > > Internet Explorer Instructions: > > Open Internet Explorer. Go to the Parkinsn List Online at: > > http://parkinsons-information-exchange-network-online.com/parkmail/maillist. > html > > NOTE: If you click on the above link and it doesn't work..it is because it > has to be all on one line. If it is wrapped..it may not work. > Alternatively, > > http://parkinsons-information-exchange-network-online.com > > is shorter. Use the P-I-E-N-O Quick Links to go to the Parkinsn's List > Messages page. > > At the top of the Internet Explorer click on the word Tools. Select > Internet Options. The very top item in the menu that opens is called > Homepage. The box is blue and has the address of your present homepage. A > button is below called Use Current. Click that. At the bottom of that page > the Apply button is activated. Click on the Apply button and then click the > OK button. > > Close Internet Explorer now and then reopen it. The Parkinsn List Online > will be the first page you will see when you open Internet Explorer. BTW > don't forget to update your version of IE. > > Netscape Instructions: > > Open Netscape. Go to the Parkinsn List Online at: > > http://parkinsons-information-exchange-network-online.com/parkmail/maillist. > html > > OR > > NOTE: If you click on the above link and it doesn't work..it is because it > has to be all on one line. If it is wrapped..it may not work. > Alternatively, > > http://parkinsons-information-exchange-network-online.com > > is shorter. Use the P-I-E-N-O Quick Links to go to the Parkinsn's List > Messages page. > > > At the very top of the browser, click on the word Edit and select preferences. > > On the right hand side of the box that opens is a sectioned called Homepage. > Click on the button that says Current Page. Then click on the OK button at > the bottom. > > Close Netscape and reopen. Parkinsn List Online will be there every time > you open Netscape. > > Parkinsn List Online has been available for little over a year now and is > seeding the wisdom, tribulations and humor of the Parkinsn List to the > world. Thank you all for contributing. > > John Cottingham
Faith and hope, Sandy
Hi Sandy,
I'm very sorry to hear you are in pain today. Please accept a hug over the internet.
I have a little story, which I hope will make you all laugh!
I'm trying to write this book about Faith, Family and Friends, and how they are helping me cope with PD. Yesterday I got another reply from my writing Instructor, Norm. He wants more dramatics, intensity and shorter sentences. "Cut the verbiage" he says. "Your approach is too polite and innocuous" he says. The foreword has been back and forth to Norm's address in California so many times, the postal clerk and I are on a first-name-basis! I can't help being polite (I'm British and have lived in Canada 34 years). People say I still have an accent! Anyway, I wrote this little poem yesterday in a fit of pique!
An Englishwoman's Lament.
British reserve is a terrible thing.
"Stiff upper lip and all that."
Writing this book is really a stretch.
I'd much rather talk to the cat!
Onward and upward you say with aplomb!
My goodness, you are so brave.
I'd much rather ride in a black limousine.
And once in a while give a wave.
If it wasn't for people urging me on.
I'm sure I'd have long ago quit!
But there must be a bit of old Churchill in me.
So I'll not stop 'til we're a big hit!
Pauline
Bravo Pauline....you write so well. Thanks for the post. It gave me a smile. I wish I could gather up my courage to start my book. It has been in my brain walking around now for 21 yrs. The same number of yrs I have had pd. I certainly admire you Pauline.
faith and hope,
Sandy
Hi Sandy,
Thanks for the reply. The messages from Sara, Judy and Sandi touched my heart deeply and I felt like giving myself a good kick in the you know where. I too live on pension income from my previous employer and the Canadian disability pension. I missed out on the extra work pension because of the length of time it took to find out what was wrong with me. I thought I just needed a couple of months rest, so I accepted a severance package thinking I could find another job, no sweat! It was my sister-in-law who finally diagnosed me, and only because she noticed I was walking slow, just like her friend who had PD. This all happened one year after I left the Bank, so I had no recourse to get the Bank's disability pension (which I had paid into for 20 years)! I promise I will never complain again. I truly do admire and respect those of you wonderful, brave people who have been coping with PD for many years. Please be patient with this novice - I'm learning! I cooked supper for my son-in-law and granddaughter, did dishes, now I'm going home to feed the cats. God bless. Pauline
Pauline,
When I read what you write it is almost as if I am sitting with you having a cup of coffee and we are having a nice chat. I want to tell you something honestly and I hope you take it in the way it is meant. It is from my heart. Please do not promise that you will never complain again. We are all human here. If you put the pressure on yourself not to vent, scream, get down, pout, or even cry....well, that puts a lot of expectations on yourself. It is good and healthy to be able to have a place to go to to say ..."today has been a poopy-butt day" or "I am mad as hell at the pd today!" You see we all have those days. When I first started the Porch (thanks to Brenda and Nan) one of my first thoughts was that there would be no judgement here. I believe that our minds will play tricks on us...but our bodies will never lie. Your feelings and emotions are a part of who you are; they make up your personality. On any given day when you need to unload a mess of hurts that are in your heart, feel free to come here, spill your guts...I promise I will help you clean up the mess. I am so thankful you found your way here. You are already a friend and sister. Pd may be the common thread but friendship, love, care, and compassion are our foundation.
faith and hope,
Sandy
It must be time for me to come back to the Porch and meet all our new "swingers." For Sandi, Judy and Pauline who don't know me, my name is Sylvia and I was dxd in January of 2001. I am 64 yrs old and live in Frederick, Maryland. I am married and have five grandchildren and they live in this area so I get to see them whenever.
Until Tuesday I was in a clinical drug study for Sumanirole, a drug that it is hoped will retard the progression of PD symptoms. Actually, I was doing very well with it for the first 7 weeks (of a 12 week trial period) and most of my symptoms were well under control, including the tremor. Because this is a trial of a new drug, exhaustive testing and lab work is done on a weekly basis, including electrocardiograms. Well come week 7 when I had worn a Holter Monitor for a 24 hour period, I was notified that my EKG was showing changes that were "clinically significant." I was removed from the study that day and have been on a reduction dose to wean me off the medication.
It was extremely important to me to complete this drug trial because three generations of my family have had PD. I watched my father with this damn disease and always wanted to be able to do something more than donate money to the NPF in his memory. Little did I know how I was going to memoralize my family. But that's OK. My head knows that even if I can no longer do this study, it has still be useful and the investigators have gained some new knowledge about the drug. My head knows this but my heart is having a bit of trouble dealing with it. I have always tried not to tke myself too seriously and I love to laugh and make others laugh but I am having a hard time doing it right now.
Tomorrow I am going to the cardiologist for an echo cardiogram and next Thursday I get to spend 5 hours in his office having an stress test with Cardiolite, a radioisotope that will be injected into a vein. Sounds like a realy whoop-de-do of a day, huh? It strikes me that I have just added another physician to my already burdgeoning stable of doctors. Pretty soon we will have five doctors to treat our feet because we will have to have one for each toe but they will be able to treat the same toe on both feet.
I am so glad to be able to come to the Porch and gripe, cry or laugh. By the way, where is Kia? Haven't heard from her for a while. Luvtosew, I am really looking forward to seeing you in September in New York. That is where I grew up...right in the middle of the city. Can't wait to go back altho' I do know it won't be the same. Hell, I'm not the same, why should the city be? Sorry if the language is offensive. I will control it better in the future but I am just so tired of having to censor everything, actions, words, etc.
I'd better sign off before I get myself into real trouble. Welcome newbies, and old friends, thanks for being so patient with me.
Hugs, Sylvia
Hello Sylvia,
Wow aren't you a sight for these sore eyes. I am glad you shared what has been happening with you. This will be valuable information to us all. I consider you a courageous woman whom I have grown to love. The laughter and love and determination that I saw in you at the Rally is only some of the many things I cherish and admire about you Sylvia. Keep on keepin on.....
faith and hope, Sandy
Hi Pauline,
If you would like some pointers on being polite yet blunt, I can help you out a little. Just teasing, ask Sandy what I mean if you'd like. lol
It's so good to see you Sandy, Lu (Dianne-sorry I can't spell-please say hi to Mike for us,lol), Sylvia, and everyone. I'm sorry my memory is a little cluttered this morning. Please don't take offense if I left your name off. I do miss your lovely smiles and company, all so much.
I rode my bike to work this morning,(it's a balmy 35 degrees) and the feeling is starting to come back in my fingers. I look like the Micheline man, but I'm warm for the most part.lol When it wamrs up a little more, we all have to go for a long Cyber ride. You can sit in front of a fan and have someone drop bugs into it, for a more realistic effect, if you'd like.lol
I've been hit in the face with many varieties of bugs, stones, ciggarette butts, stung by bees, hit with assorted other things, even bird poop. But, I still love to ride, it all comes out in the wash.lol
Although, last summer, I passed a mini-van after being assaulted by gummi-bears being pitched out the windows by toddlers and pre-schoolers. Thank goodness that sort of thing doesn't happen often.lol
Well, I'm talking too much. So take care my dear ladies, rest well and in comfort.
Hello Toadie?
I am assuming that was toadie...talking about riding her bike to work....you just needed to make a detour and come and get me and I would go to work with you. At any rate, I was up until well passed 3 in the morning...so my day is just getting started....better late than never. I hope you all have a good day....
faith and hope,
Sandy
Hi Sandy,
Thank you so much for your reply. I'll remember your words of wisdom - promise OK? For some strange reason I was awake at six a.m. today. Its a beautiful sunny day in British Columbia.
I recently found out my Dad had PD before he died. I didn't know him very well (the story's in the book). The family sort of kept this knowledge from me and when I found out I was mad as hell for a few days. Did I say mad as hell! That feels much better! Thanks Sandy and everyone. Have a great weekend. Pauline
oops sorry, that was me riding my harley, love toadie,
hehehe
Hello Toadie,
It is now 3:00 in the morning....I am watching Ride With The Wind on the WE channel. Women's Entertainment. It is about a motorcyle racer(harley) that bonds with a cancer-stricken boy and his mother. My body dreams of the day that I can ride with the wind..I have never owned a harley...but have always loved them...have always dreamed of owning one...being able to physically drive one on my own. My last ride was at Myrtle Beach in 1986 . I was a passenger then... I find it odd that you sent me an e-mail today speaking of Riding With the Wind and now I cannot sleep..and I am watching a movie titled what you described so eloquently in your e-mail. The harley racer is the actor Craig T Nelson. He has named his harley The Eagle. For me, when it gets the most difficult...the pd and the pain, I sometimes envision myself soaring on the wings of an eagle and riding with the wind........
enough said...somehow toadie I know you feel and identify with what I am feeling...I love you girl....thanks for the moments pause...
faith and hope,
Sandy
Sandy, saw your post at mgh to toadie about the eagle and harley, check my just released web site, the NEW eagles nest. www.dbiker2.tripod.com
Through a thread started by 78harley I was inspired to write this piece...
How Will You? Or Will You? How will you look at me; in this my 21st year of living with PD? Will you see the woman I long to be(the woman I am)? Or will you see just the PD?
How will you notice my walk? Will you see the limp of PD; or will you see the gentle sway of my hips when I courageously walk the walk that my heart talks?
How will you look upon my face? Will you see the PD mask; or will you behold my eyes that hold the gift of God's grace?
How will you touch me? Will you touch me to feel my soul; or will you turn away from me because of the tremor of PD?
How will you touch my heart? Will you touch my heart because of pity; Or will you be true and gentle with me in such a way that nothing can set our hearts apart?
How will you hear me? Will you hear the monotone of PD; or will you hear my desire to embrace life while choosing to live with PD?
How Will You? Or Will You?
faith and hope, Sandy
Sandy and Harley: Your poetry is so moving and beautiful. It brings me to tears as a read and re-read them.
Thank you. Sylvia
Thank you for your words of encouragement Sylvia. You being a beautiful woman know the strong sisterhood bond that we share as women. I love you.
Sandy
Hi Sandy and everybody. Thanks for all of the kind words. I am feeling much better and beginning to feel like I can take on the world again. Just knowing there is someone to talk to that understands makes things a lot easier to face. I am waiting for my retirement papers from work and have the support of all my doctors. I am really anxious to retire and start a new part of my life. I plan on moving to California to be closer to my sister which I am really looking forward to. Sandy, I hope things are going well for you. I went through a divorce about 17 years ago and I thought my life was over. But, gee, to my surprise I came through it all a better and stronger person. God has always helped me through the tough times and I know that he is here for all of us as we face this "PD adventure." I know that he will never let us down. I know that quite often I seem to lose sight of this but down deep I know he is there holding me up and making me stronger. There is always something to learn from everything that happens to us and it is up to us to take that and do something positive with it. Thanks everyone for being there for me. May God bless and keep you all.
Sara
Hello Sara,
Good to see you today and sounding like you are on the mend. Yes, I agree with you. I know that I would not have made it this far in my life without the love of God.I am watching LPGA, ladies golf. I am currently trying to get in shape for a golf tournament that our dear friend Joan Snyder is planning in her home state of Illinois. With God's strength I have a hopeful determination for getting through the 18 holes. I won't be playing to win, but to do the best I can and complete the course.
It is an absolutely beautiful day here in North Carolina. I have been to the library, to K-mart, and finally to the grocery store.
I hope the weather in Canada for Bridging the Borders is as beautiful as it is here today. Wishing you all that have gone to Canada a joyous time of bonding and strengthening of your knowledge of PD through the love and fellowship of seeing old friends and meeting new.
faith and hope, Sandy
4/21/01 hi sandy! i hope today has been a bit more pain-free. thank you for your reply. take care as to not over-do out on the links... kathleen
Hello Kathleen,
How are you? I will try not to overdo on the links. I am just praying meds will be at optimum effect in this pd body.....
faith and hope,
Sandy
Sandy, sorry,it's http:dbiker2.tripod.com
hi! well it was so nice out yesterday evening that I did the dumbest typical thing loll OK I overdid it. When will I learn?? don't know:) BUT some of the flower bed looks nice. I scotted down to the basment on my butt and got my tennies in the washer, then prayed my new compression hose didn't have mud on them. Will I ever do that again??I hope so:) Sara, read ur posting about medical care. Do please tell what durable medical equiptment do u use?? ALso, check into california drug programs. Some states like Mass. has income programs that are higher than the national poverty income levels. For example some states it takes into account ur MONTHLY (not yearly) medical expenses, utilities, morgage, property taxes, everything. Anyone have the state url? Look under county programs. Sometimes the fed gives the state the money then the state gives the money to the individual counties who in turn decide how to devy it up. If a person lives with a relative, most often the state expects and figures a set amount to contribute to ur care.
What do u mean exactly by loosing ur house? morgage payments missed or can't take care of it like before?? The interest rates are low now, . A good source is the public library. Read about medicare tax laws verses IRS tax laws for the elderly and under 65 (check the age). They are different. Also, Roth IRA's differ from the old conventional ones. Check into that.
If u have congestive heart failure, then u should qualify for a govt. program. States have different classifications for severity of illness. Have u gone to the cardiologist I assume?? If u ever go to the cleveland clinic ur welcome in my home. They are number 1 in the country and I am in the cardiac rehab class and doing good! We had a young lady (age 34 about) in the class and I remember fluid retention as something very important to watch. Ask ur cardiologist. I have what they call dysautonomia(sortof the autonomic heart neuro area) and parkinsonism.
Enjoy urself now. Buy what u want and need because as the illness progresses the money literally flys faster than the speed of light:)
Kathleen is this the Kathleen from PA??
Dianne are u working on ur shirt/jacket for the sewing contest?
Btw where is Kia??
Welcome, judy,sandi, pauline .
nancy 41
Dear Sandi, Thank-you for all the info you sent.How ever,I'm still not finding any info on advanced stages of Parkinsons.I am looking for this because this is what his P.D. Doc says he's in.I'm having a hard time believing this because He does so well most days and horrible on others.Is there anyone out there who can help me ? Please don't say ask the Doc,because that gets me no where.
Dear Sandi, Thank-you for all the info you sent.How ever,I'm still not finding any info on advanced stages of Parkinsons.I am looking for this because this is what his P.D. Doc says he's in.I'm having a hard time believing this because He does so well most days and horrible on others.Is there anyone out there who can help me ? Please don't say ask the Doc,because that gets me no where. Thanks so much, Pillowtalk82@peoplepc.com
4/22/01 hi nancy--yes it is the kathleen from pa. you know me from the "dumpster" as brainok. how have you been? hope things are going well with everyone today. i spent most of the day working in my garden trying to eradicate my herb garden so i don't have to take care of one more flower bed--now my husband can just mow it all down.
kathy
Hello Pillowtalk,
I have been away from my computer all day. I apologize for not informing anyone of being gone for the day. I usually do this before leaving for a whole day. I promise I will get some kind of answer for you about "the last stages of pd". It may take me a day to get this done....but I will try to get the info you need. Anyone reading the Porch that may have info on last stages of pd feel free to help leave info. We all know how it feels not to have info when you need it or want it...I hear you...keep checking here. my personal e-mail is sassypwp@statesville.net
Faith and hope,
Sandy
Hi ya Nancy....good to hear from you....yup, sounds like you been busy..there is nothing like digging in the dirt. Be good to yourself though and pamper and get rested up. You have got to remember Switzerland....Kia has taken time away from computer. I will e-mail her and get her permission to give you her e-mail. I am sure she would love to hear from ya...she misses everyone! She just feels she needed a break....thanks for asking about her Nanc...
BTW ...thanks for all the good advice for Sara...Girlfriend you sure know your stuff..I appreciated your loving kindness and wealth of knowledge...
Love, Sandy
I MISS YOU LUVSTOSEW.I MISS YOU LUVSTOSEW.I MISS YOU LUVSTOSEW.I MISS YOU LUVSTOSEW.I MISS YOU LUVSTOSEW.I MISS YOU LUVSTOSEW.I MISS YOU LUVSTOSEW.I MISS YOU LUVSTOSEW.I MISS YOU LUVSTOSEW.I MISS YOU LUVSTOSEW.I MISS YOU LUVSTOSEW.I MISS YOU LUVSTOSEW.I MISS YOU LUVSTOSEW.I MISS YOU LUVSTOSEW.I MISS YOU LUVSTOSEW.
faith and hope, Sandy
Hi Sandi, just got home from Canada. Wow! I have so much to share but am about to drop. Got to get to bed, it's late here. I will post tomorrow and fill you all in on the super weekend. I have missed you terribly. No computer for three days, ugh! Lill, Shari's husbnd Chuck and I did some karoke last night till 1 am, what fun! He puts Elvis to shame! lol Got to run, lol lol, as if i ever run lol. Luvstosew
We cannot wait.....with bated breath....Sandy
Hello...
Many of you know Jen Smith from California aka jjslick. I just got word that she believes her Mom just suffered a stroke. They are on their way to hospital an ambulance had to be called. We need to be keeping her and her parents in our thoughts and prayers.
faith and hope,
Sandy
Sleep fast, Luvtosew. I can't wait to hear all about your week-end. BTW, welcome home. I sure missed you!
Hugs, Sylvia
Hi Sandy, It's just your "little bro" Tim checking out what's new here. You have created one awsome following but that's because your you - a special caring person who seems to have been through it all. Nice sunny day here in Connecticut - it's getting too hot. I'm never happy - too hot or too cold. I've always had low tolerance for the heat but my MSA makes me sweat on the coldest of days. Had Siobhan run out yesterday for more fans - LOL and shorts! I would never wear shorts in public when I was working - don't know why - image thing I guess. Afraid my patients would say "What a nice pair of legs on such a round little man". Sick with a stomach bug for 2 days now so it's knocked me on my butt. Trying to get some Fundraising work done for PLWP as well as work on my website while dozing at the computer. So I thought I'd come say HI.
Love ya Tim
HI Sandy, with all this cool air and wind around Illinois today, I've got aches even in my fingernails. I get in on this computer and it changes my world around. Not that the pain goes away but I am less aware of it. Which is a good feeling. I saw a lot of e-mail from and about David. I am anxious to hear how his op went today (?) wasn't it? Is he a minister? He expressses himself so well on the commuter doesn't he? I don't have anyway to write him, so I thought you could answer some of my questions about him. Talked to Joan S. about the Fund Raiser in July. I am excited that I can help her in some way. We live about 30 minutes from each other. I will be anxious to meet everyone. Are you able to travel? Talk later, Nancy B
Sandi,
I have had my "feelers" out trying to get the info you were wanting. This is a site that may help. This woman is named Camilla Flinterman. For all of you caregivers out there the Flinterman site is good. Sandi,please check your mail. I have sent you Camilla's e-mail addy.
on the web at http://www.geocities.com/camillahf/index.html and also at http://members.tripod.lycos.nl/genugten/flinterm.htm
"Ask me about the CARE list for Caregivers of Parkinsonians ! " And visit the CARE webring at http://www.pdcaregiver.org
faith and hope,
Sandy
UPDATE ON DAVID VAUGHN'S SURGERY! A dear man and member of our PLWP Angel Team!
Hello dear PLWP family,
I just got finished speaking with David's wife, Brenda. She is a very dear and lovely lady. She said that David came through the surgery quite well and he was resting comfortably. Brenda V. did speak of a test he will have later in the week. This test will show if his digestive system is functioning properly. If the results of the test comes out good, then David should not need anymore surgery. I expressed that we would be continuing in prayer and positive thoughts. So lets do our part for a dear brother and friend of our PLWP family!
faith and hope,
Sandy
Warning....I am aware I am answering everything sort of out of order today...please bear with me....
I bet I have had the TV on 20 minutes today. I was up and about early today. I went to my Fitness Plus program at my hospital and worked out. Nancy B to answer your question.,..yes I am able to taqvel and plan on being at the Golf tournament and participating in it. I am glad you are gonna be a part of it. We will get to meet ..how cool!!
Now I need to read some more for any other questions...keep reading....
faith and hope,
Sandy....
God Bless your Heart Lil Brother Tim. I am sorry I have neglected you here lately. Thanks for all the supportive and kind thoughts. Please forgive my keyboarding erors...oops like that..typing sucks today. Everything else is great though. It is beautiful here in North Carolina. I have joined a fitness program and I am whipping myself into shape for an up and coming golf tournament planned by our dear sweet and foxy Joan Snyder. I am thinking I might need sponsorship....I have no idea how to go about it. Registration for golf tournament is $150.00. Golf has always been a passion of mine. I gave it up when I was still living with my soon to be ex worse half...because he would get abusive when I would golf better than him. Am I soooo GGGLLLLAAAAAADDDDDD that he is history! Yes life is grand....pain is hell..but getting the endorphins flowing through fitness seems to be helping . Thanks to the good Lord above. I am sorry to hear you have a bug....got an idea..you expell the bug and we will air mail it to my ex!! Did I say that? Yup my name is not sassy for nothing..I am on a mission.....through love, grace, forgiveness, and hard work I am gonna give this pd and your MSA a good kick in the arse...and send it back to hell where it came from....Look out world.....I love you Tim, Siobhan, and kids tooo!!
Next question...keep reading people....oh by the way ...after I walked a 20 minute mile I went and helped my Pop take the pool cover off the pool for the pool season.....YYYEEEESSSSSSSSSSSSSSSSSS!! slam dunk...or another puck scored..it is the stanley cup you know...somebody get me off of this merry -go- round...
Keep reading...I have caught my second wind...
faith and hope, Sandy...
Hi Sandy,
Your poetry is so beautiful, honest and from the heart. What can I do to get you to write that book. On Saturday morning one of the members of Women and Words (a local writing group I belong to). Carmen is brilliant and loves to write science fiction. Anyway, I gave her free reign with my foreword. She highlighted, cut, pasted, moved, cut again and we ended up with something we were both happy with. I think she was an angel in discuise!
I have a PD question for you. When I wake up from an afternoon nap my body feels very heavy, like a bag of rocks. Do you know why this happens?
Best wishes to everyone, Pauline.
HI SANDY THANK YOU FOR REPLYING. MY NAME IS BRIAN DOCHERTY I LIVE IN A TOWN CALLED PORTSMOUTH SOUTH ENGLAND UK. I HAVE HAD SYMPTONS SINCE 1991 AND THEN DIOGNOSED IN 1998. DO YOU RECEIVE MANY E-MAILS FROM YOUNG PEOPLE. MY MEDICATION IS AMANTADINE AND PRAMIPEXOLE. I AM NOT VERY GOOD AT EXPRESSING MYSELF AND DONT WANT TO TELL OF BAD DAYS I MIGHT BE HAVING[IM SURE YOU HAVE ANOUGH OF THAT]I DONT FEEL SORRY FOR MYSELF I AM TO POSITIVE FOR THAT[BIT LIKE YOURSELF]I JUST WANTED TO NOW WITH YOUR KNOWLEDGE COULD YOU TELL OF ANY FUTURE DEVELOPMENTS TOWARDS A CURE.IN ENGLAND THEY GIVE ALOT OF IMFORMATION[MYBE ITS BECAUSE OF FALSE HOPE] YOUR FRIEND DOC. WRITE SOON BYE.
Hello Pauline,
Yes I can help you with that question. That heaviness that you feel could be the overall general fatigue that comes along with PD. I do the same thing when a sneak a little nap in during the day. Sometimes I feel as if I am strapped down by invisible restraints...I do know what relieves the heaviness sometimes..a nice bath...make sure you can get in and out of the tub safely...nothing like a nice relaxing bubble bath to spoil oneself. Give it a try....
faith and hope,
Sandy
PS That book is a brewing....and a bubbling...keep praying for me to get the lead out of my rear...heaviness comes from lead too! Wink and a grin....
Hello Doc!!!
Have you joined PLWP? The link to become a member is above the box where you write your questions. We promise not to bite here at PLWP. PLWP is global. Just thought I would mention it.
Hey, there is no such thing as false hopes in my corner of the world....
Voltaire said ..Faith consists in believing when it is beyond the power of reason to believe. It is not enough that a thing be possible for it to be believed.
You are already considered family here on the Porch. I hope you will feel at home. I hope you come back and visit everyday....Yes it sounds like we are quite a bit a like. You know the question "Is the glass half full of water or half empty of water?"
My answer has always been....I don't see it as half full or half empty...I know that I am thirsty and it is something wet to drink.
You are not in this alone.....we are here...just wished you lived closer. Computers are a blessing...
As far as cures are concerned. I know that searching for a cure is important but I try not to think about cures.... That is just how I get from one day to another....Always ...always...have that hope and faith...Have you heard of the Amgen drug trial? Pwnkle a valuable member of PLWP has posted to the MGH forum about it.
faith and hope, Sandy
I just want to say thanks again to everyone that has offered their suggestions and concern. I just wanted everyone to know that once again the Lord has come through for me. I just got home from the hospital where I work. I have been trying to get a hardship withdrawal from my deferred compensation plan. They were not very promising and make it so difficult that I thought I was just plain out of luck. Because the money is taken out of your paycheck before taxes are taken out the IRS has their hands in it. Everyone here in the good ole USA knows what is like to deal with the IRS. Well, I just got word from the hardship committee and my request was granted. In fact, they even included money to pay for next month's expenses. My check will be cut tomorrow and they are going to Fed Ex it to me. Of course with the stress of going through all of this and now the relief and excitement since I got the good word, Old Mr. PD has really had his grip on me today. And for once I am so happy that I don't even care how much I shake or how stiff I am. To those of you who offered help, Thank You So Much! I need to get down what I need to know and then I will take you up on your offers.
Sara
Sara,
Wow..I love days like today! You have given me the best news today....smiling from ear to ear...I am very happy and relieved for you....congratulations sweetie. Always ...always come here and feel at home....what we can do to help, we sure will give it the sassyfrass try!.....
You just need to kick back and breath deep.....be good to yourself okay? Stop and smell the flowers.
faith and hope, Sandy
H
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LUVSTOSEW! WE MISS YOU!!!!!
FAITH AND HOPE,
SANDY
Hi Sandy,
Bruce from PLWP MGH Forum is going for his DBS STN surgery tommorow morning, we need to keep him in our thoughts and prayers.
Hi there. My name is Steve. I live in Ottawa Canada and I have had PD since 1965. I am 52 now and things are going relatively OK (maybe not). I would love to exchange ideas, etc. My email is almond@home.com.
Take care Steve Almond
Yes Bruce Landess will be very much in our thoughts and prayers as he goes through his DBS.
We also need to remember David Vaughn and his lovely wife Brenda. He had a spell with his heart after his surgery today. The family is needing continuing postive thoughts and prayers.
faith and hope,
Sandy
wow Steve,
36 years. I bet you have an inspiring life story to tell. I added you to my e-mail addresses. Mine is sassypwp@statesville.net . What kind of ideas do you wish to exchange. How are you doing really? I noticed the "relatively ok" (maybe not) remark. I am glad you found your way to the Porch. Come and sit a spell anytime. We are all family...and all are welcome.
faith and hope,
Sandy
Good morning dear Sandy and parky porch friends, i had a wonderful story for you about this past weekend but the computer ate it, how dare itdo that. lol so i will try later today to write it again. Luv you all tremendously. i have lots to share. talk to you soon. Luvstosew
Good morning dear Sandy and parky porch friends, i had a wonderful story for you about this past weekend but the computer ate it, how dare itdo that. lol so i will try later today to write it again. Luv you all tremendously. i have lots to share. talk to you soon. Luvstosew
Luvstosew,
Anticipation makes the story all the better when it is posted. If my computer gained weight each time it ate something I have written......it would definitely need to be on a diet!
faith and hope,
Sandy
Dear Sandy and parky porch friends, wow, what a tremendous weekend. This was an experience i will cherish forever. Where do i begin. First, for all you new people on the porch, a very special welcome. I am 48, was finally diagnosed in jan. 1997 after a ten years of symptoms and 4 neruologists seeing me. The fourth finally diagnosed the pd. For the past four years since being diagnosed, i have spoken to no one who has pd. The first of this year, I discovered PLWP while surfing the net. WOW what an impact on my life. The very first parky I have ever met is Shari from Canada. She is my age and has also had pd for several years at least. We talk everyday several times on the net and have developed the best, absolute best friendship. Being an only child, I never had a sister or even knew what it would be like to have one. Shari has come into my life and is the sister i never had. We found out we both love to sew and create things, even have the same anniversary date (only five years difference) . Shari not only sews fabulous things but also loves to paint and made some beautiful items for this past weekend's seminar, Bridging the Borders. She even donated a quilt and some afghans, one made by her wonderful mom, and one by another dear friend to be raffled....with funds going to help with pd research, etc. PLWP has a given me an opportunity to learn, to express myself no matter how i feel at the time, and to meet the most wonderful people. I never dreamed i would ever, in this lifetime get to meet Shari......but guess what........you guessed it..........we finally met in person this past weekend. What a tremendous moment, the reuniting of hearts and souls. I feel as though i havwe known shari all my life and we were having a family reunion. Words cannot express well these feelings. Just imagine for yourself, the joy of friendship and meeting in person someone you have grown to dearly love and respect. Hope you guys have lots of time cause i have more to share. Shari and I were inseparable during the weekend. We attended wonderful programs presented by two doctors of Naturopathy and a pediatrician who has one fabulous sense of humor. I enjoyed a massage for the first time in my life, and wow what an experience./ wish i could have put her and her chair in my suitcase. Tremendous. I am usually so rigid and stiff, this was sooooooo relaxing. We learned about Reiki and even had hands on experience. Shari really enjoyed this, thought her head was going to fall into the table, so relaxing and revitalizing. Saturday was the sock hop dance. Let me tell you this, some of us parkies may not always wallk very good, may be pretty stiff, but look out when we hit the dance floor. lollol Even those with severe dyskinesia, moved on the dance floor with such ease, like poetry in motion. I so enjoyed watching Al and Lynda dance and shari and Chuck. And watch out for Chris Hall, he made all our hearts swoon lol lol. His wife, also named Chris, won't mind me saying this. Fig did a marvelous job as DJ, even if i had to bug him a few times to throw in a song by Neal McCoy called Shakin. Shari and i both wanted to hear it and everyone loved it. Should be one of our theme songs. Those Canadians needed a little touch of Texas lol lol. It was beautiful reuniting with friends i met recently in Kentucky at athe PLWP rally - Periwinkle and Carl, Fig and Donna, Janet, Lil, Al and Lynda, Bren and Nan, Shy, and meetiang many new and wonderful parkies and caregivers from Canada and the States. It felt so good to be with other people who understand you, who have walked in yur shoes or are walking in similar shoes, with pd. There was a common bond, a joining of souls. You never had to explain yourself. Chris had asked me to dance and i just took my meds so wasn't moving tooo good yet, and his comment was "let me know when you're ready and we will dance". Another highlight was Saturday nite, guess who did karoke for the very first time, me. what a hoot. Lil you are the best and i really enjoyed singing with you. Infact some of us did karoke until 1 am. such fun! Shari's husband stole the show...with his karoke singing to about a dozen elvis songs. He actually put Elvis to shame, he was soooooo good. He had us all hollering! Sunday's program on laughter really touched my heart and soul. i don't laugh enough, too serious, but this doctor made us all laugh so hard almost fell out of chair in tears of joy. He did make some profound comments like "You can alter your life with laughter". He also said that we all need to experience inverse paranoia which is "looking at how damn funny things are in life, seeing the good". Other comments made "Laughter is the shortest distance between two people" by Victor Borge; He also said to play with a puppy or a child and when you just don't know what to do in a situation "just ask or think what would Lassie do?" He also shared some humor he found on church and hospital advertisement boards such as the following: a local funeral home whose family name and funeral home name is Amigone Funeral Home; a plumbing company billboard read "Don't sleep with a drip.....call"; found on a local hospital parking lot elevator -- "Three loonies required to exit parking lot" (a looney is a dollar in Canadian); found on a church billboard == 9 a.m. service -Jesus Walked on Water, 11 a.m. service = Searching for Jesus. He ended his humor talk by reading a poem from a collection i think is entitled "Philosophy of life, I'd Pick More Daisies". I am going to search for this and share more in future. He did leave us with a thought that we do need to laugh more and see the brighter side of life. with pd we already see the serioius, sometimes gloomey side but we can choose to see the brighter side and experience inverse paranoia. "You cannot poor laughter on others without spilling a little on yourself" Ralph Waldo Emerson. We also heard two doctors of Naturopathy speak. There info was very interesting and enlightening and extremely thought provoking. I gained much from the info on diet and plan to do some research myself on this topic. Christi Hall did a program on persoanlities reference to the colors gold, green, blue and orange. This was such fun and interesting to see what color types we are and what that says about our personalities. I can't thank PLWP enough for introducing me to Shari, and the many other parkies nd caregivers I have met. I don't feel alone in this battle anymore. We are all here for each other. Bridging the Borders was fantastic. Thank you lynda, Al, Janet, Ryan, and there was another man who helped much but i can't remember his name, for making this a weekend to long be remembered and cherished. I am not a big traveler, it just happened by a miracle that i was able to go to kentucky and then to canada for the two pd get togethers. My life has been richly blessed by all of yu. I forgot to mention, a very important person, whose friendship i cherish, my roomate Cindy. She is a social worker for shool in Brooklyn, New York. SInce i was a geriatric social worker we already had a bond by profession. I listened to her talk and share and was touched deeply. She is the best, has a heart of pure gold. Cindy, i look forward to seeing you again in September. i know i will need a social worker by then lol. Hey guys, mark Sept. 23, 2001, on yur calendars now for the Parkinson's Unity Walk in New York. I am planning if nothing happens to go. also i think plans are in the works for some PLWP get togethers that weekend. I also think there may be some hotel rooms blocked off for us parkies with PLWP. I have been told by bren and Nan that someone is wokring on this now. le me leave you with one thought that the pediatrician and humorist said "Opportunity is Nowhere" . How do yu read this "Opportunity is now here or opportunity is nowhere? We can make a difference in our own lives and in thelives of others through PLWP. thank yu bren, nan, and sandy and shari for brightening my life with PLWP. thanks Lynda and your crew for Bridging the Borders, an experience to long be remembered and cherished. Lil thanks for singing with me, oh sooooo much fun! and thanks Shari for being my sis. Love and hugs to you all, and welcome again all new members. I don't usually write this much. but had a lot to say....luv you all, Luvstosew
Hi Luvstosew,
Wow! I laughed and cried all the way through your post. It is wonderful! I am so glad you had such a good time and made so many memories....keep them close to your heart, with the anticipation of many more to come.
Well dear family...I have bitten more off than I can chew. I have come to the conclusion that I will not be able to golf at the golf tournament. The trip is still a go....but I just will not be golfing in the tournament. There is going to be so much happening in Chillicothe; it is going to be a blast!!
I am glad you are home safe Luvstosew and cherishing your newly made memories....
Faith and hope, Sandy
Hey sweet sandy, why is golf a no go?
caz
GEE WHERE IS EVERYONE?
faith and hope, Sandy
Hey Sandy Keep practicing that golf swing. I will talk to u soon about how I (and with the help of others) want to help you fulfill that dream. With your blessings of course. Love you sweetie, Caz
Sandy, I forgot to thank Neil for the wonderful job he did at Bridging the Borders. I forgot his name in the post above. Neil, it was a joy to meet you. You are indeed an inspiration to us all. take care, dear friend. Luvstosew
Caz,
I do not know what to say....speechless I guess.... I did not tell you guys here on the Porch about me not golfing in order to get help....you know how stubborn I am...caz it means a lot to me to be independent. You know I am living on my own for the first time in my life. Call it foolish pride...we will talk okay? Thanks for the love gift from your heart caz....we will talk....
faith and hope, Sandy
Almost 3:00 am here in North Carolina. I am listening to a Celine Dion CD. I am wondering if anyone else is walking the floors.
faith and hope,
Sandy
Oh goodness! i must be losing my mind lol lol! according to my children, one has to have a mind first inorder to lose it lol lol. Well that leaves me out lol! I forgot something reallyyyyyyyyyy important about Bridging the Borders, something wonderful and spectacular! WOW! Sandy, Shari's mom made the most beautiful afghan for the raffle and i wanted it. But when the winning ticket was chosen it wasn't mine, but Shari's. Shari had purchased some raffle tickets too. And guess what happened next.....you guessed it! Shari preseted me with the gorgeous afghan. What a loving nd kind thing to do. I have met Shari's Mom over internet thru msn messenger. What an absolutely delightful lady, so creative, so loving and caring,lilke her daughter. i just had to share this with you. It was a marvelous end to a most wonderful weekend. Luvstosew
Hey Sandy, Here is my idea. Throughout the year I save my change in a jar and have a check made out to Parkinson Alliance. Well I checked with Joan to see where the Golf fee goes and it goes to Parkinson Alliance. Sooooooo I will sponsor you with the help of anyone else who would like to join me in getting you to be able to golf. So pack up that pride and GOLF. Sandy you do so much for others let us do someething for you. PLEASE Caz
Caz,
You have touched my heart....how can I say No? When it comes from the heart like that, if I were to say no, then I feel I would be saying no to God. God chooses his people to show his love for us. God knows how much this golf trip means to me. Plus my neurologist has said I could. I love you so...you are a precious friend....expect a big, big hug caz....Now I need to go find my box of kleenex...sniff, sniff.
faith and hope,
Sandy
Caz, this is Seasongood here. Let me have an address so I can help sponsor Sandy. My e-mail addy is: seasongood1@msn.com
Thanx, Sylvia
Sylvia and anyone else who wants to help make Sandy a golf pro. This is my address Carol Post E1953 Hill Rd Luxemburg, Wi 54217
Thank you all for helping me put a smile on her face, even if it did cost her a box of kleenex. You guys are the best, Caz
Oh my goodness.....I guess the stock in the Kleenex company is going up today!!God love ya Sylvia and Caz!!
Faith and hope,
Sandy
Caz, count me in. I have a jar of change too. Don't have any idea how much is in it but it's yours.
I just got home home from two wonderful weeks with Nan. Philadelphia to a fantastic symposium, to Nan's work where they honored her for being...well for just being Nan, and to BTB where I added more faces to people I have come to love thru PLWP. I'll relate my perception of all of this later. Right now I just wanta be with my hubby. Two weeks was a lonnnng time to be away from my Gary.
Later, love and hope, Bren
4-25-01 7:00PM
OK Sandy, move over on that swing, it's time for me to sit on the porch for a while and let everyone know what's been going on with me.
I have been removed from the clinical drug study in which I was participating. I don't know how many of you have been in a drug study, but, particularly in a phase I study, you are monitored VERY closely, with blood labs, cardiograms, urinalysis, etc. After wearing a Holter Monitor for 24 hours, word came back from the testing institute that my heart was showing signs that were "clinically significant." Since I had worn the monitor twice before, it was felt that this was a drug induced problem and I was immediately removed from the study and am now weaned off the drug.
I am now seeing a cardiologist, at the expense of the pharmaceutical company, have had an echo cardiogram already and another big test tomorrow, a stress test with Cardiolite. The report from the echo cardiogram shows a small leakage in the mitral valve but nothing to worry about because the valve closes when it is supposed to and closes all the way. The Cardiolite test is sort of like a cat scan of the heart done with radioisotopes. It involves the dreaded treadmill and then lying down for this extremely high tech camera to take pictures of your heart by layers. I am told the test takes between 4-5 hours. I will be very glad when tomorrow is over.
I am extremely disappointed that I could not complete the study. It was so important to me because, as some of you know, my neuro feels my PD is genetic, since I am the third and possbly fourth generation in a straight line to have this disease. I won't go into what I felt when I received my diagnosis of PD because you have all been there, but I felt I had turned it around into an opportunity for me to honor my father and other ancestors by being in a study. Now I feel I'm just another statistic.
So enough said about that, this waiting game is almost over, and I have an appointment with my neuro on May 1st when I guess I will find out the rest of the story.
Thanks for the opportunity to vent.
Hugs to all, Sylvia
Hi ya Sylvia,
Did you notice that when you sat down on the swing that it was warm? I was keeping your spot warm for ya.
Let me tell you sweetie, by you coming here and sharing your news that within itself is bringing honor to your Pop and others. Even those of us that come here daily. I am thankful there are people like yourself that are willing to try the trials. It takes a lot of courage to be a pioneer. Pioneers are dedicated and have big hearts. Pioneers think more of others in order to further a cause. They claim unchartered territory that makes living easier for others.
Get my drift, Sylvia?
I love you and I thank you from my heart!!Have a sangria tomorrow and pat yourself on the back...I believe your father is very proud of his daughter.
faith and hope,
Sandy
Hi ya Bren....
You need to do some serious catching up with Gary.....thanks, by the way, for the change. THis support is blowing me away and humbles me.......
faith and hope,
Sandy
Caz: God has blessed me this week and Sandy has shared her warm love and caring with me when I was feeling the lowest. Count Me In!
Sara
Someone sent this website to me. Check it out.
Sara
http://www.webspirations.net/memo/
Sara,
As I finally sit down after chasing down another box of kleenex and blotting tears I am humbled once again...
I love that website...No worries with God....how true...He is the rock upon which I stand....
Thank you so much, all of you, for being the people you are. I am proud to call you my friend.
simply speechless, (again) Sandy
Sandy, it sounds like you are meant to swing those golf clubs.....hey do us all a favor and hang on to them , ok. lol lol Wish i could be there to see you play golf. This is surely to be kodak moment lol! You will be an inspiration to all the players and if i know you, a little bit of entertainment too lol lol! you know mike and i love you dearly. Hey guys count us in for some change to help send Sandy to the golf tournament. luv ya, Luvstosew
Dear Seasongood, what a inspiration you are to us all! It takes a special person to do what you have been doing. I'm sorry the program didn't work out but so glad you are ok. I have missed visiting with you and still think often of our meeting in Kentucky. Hope your sister is doing fine. She is a doll. Please know that you are making a difference right where you are, by being you. Your Dad is looking down from Heaven and smiling at you. He is surely proud of your efforts and desires to help others. You will be blessed for your efforts. You are a blessing to me. Have a wonderful day tomorrow. Mike says hi. we send our love. Luvstosew
hi ya Sandy, HOW ARE YOU DOING? fine I hope. David Vaughn is expected to get out of the hosptital on Friday and I don't guess they are going to have to do any more surgery. I think that is so wonderful! I can't believe how long it has been since I have been here, but believe me I haven't just been doing nothing. I got another bout of that bronchitis this time, and lost my voice again and I am not sure it isn't trying to reverse once more. I also had a bladder infetion. I ended up having to put pads on my bed to keep the bed dry. I am enjoying this spring weather. It is starting too raise my spirits back up. Between having My puter hacked to pieces and the sickness I was kind of feeling blah. Toad has set me soome things that really helped. Including some poems which I posted at the site. Yoooou will have to read them. they are wonderful.I have eight new little babie Yorkies now. They are so cute they weren't more than 3-4 inches long I probably won't be able to sell all of them. I just know I will have to keep at least one we had four boys and four girls. and I think I would like to keep one of the boys. I do hope you are doing some better now that the weather is better. I think of you dauily and whispper a prayer about your pain. I am sorry you have to go through it . A Big hug then I must go. ypittypat
Good morning,
Diane and Pat thanks for the words of encouragement. You are so nice and your hearts always seem to be in the right place. Please...Please..be remembering Sylvia today. She has her stress test today that is supposed to last anywhere from 4-5 hours. Pray that the test will come back with good reports. When one our family is going through difficult times and are tested by "life in general" that is when we need to stand with our arms linked tighter. Pat I am sorry to hear about you being sick again. Those baby yorkies sound adorable. If I could have a pet I would take one...but unfortunately I cannot....so that is that...
I need to run and work out at my fitness center at the hospital. Gotta get in shape to swing those clubs.....fun ...fun....fun....
faith and hope, Sandy
A RYAN update from Chosh; Ryan has been burning the candle at both ends lately and he is not too well. He has some breathing problems and a bad cold, but is still being treated at home-- at least for today. His doctor is very good and has supports in place, but I'm sure that he would appreciate your thoughts and prayers. Unfortunately,he really can't talk on the phone because he is quite breathless, but he always appreciates getting e-mail.
Thanks Chosh for the Update on Ryan. Of course we will continue in prayers and positive thoughts....
faith and hope,
Sandy
Hi Sandy,
I am back again only today I am a bit serious, however if I were you reading this I would probably be laughing and crying at the same time. So if you find my plight funny and I hope everyone does it is ok, if it bothers you let me know for these types of things I generally keep to myself, however in reading the things that the toad writes and finding that it seems to help him I thought I would give it a try. Not that I am the journalist that he is because I'm not That is like comparing Peanuts and peanut butter.
On a serious note which doesn't happen very often with me or at least I try hard not to be so serious since I had to give up nursing, Do any of you have problems with incontinence? I used to have a little bit and then it got a little worse, but after all this coughing I have been doing the past 2 months with Pharyngitis, laryngitis and Brochitis all I seem to have to do now is stand up. Time to go see the urologist once more as the pills hehas given me no longer work. This has been a bad week for me due to the coughing, the urinary incontinence,and then the other end when I had to take more of a laxative than usual. I am sure it was a very funny action to watch me get up and try to run to the bathroom which I can no longer do, Bm running down my leg. It has been just recently that I have had to allow my husband to cut up my meat for me, because I can no longer handle silverware with my left hand. It is practically useless as half of my left hand is numb. I can still bend it , but I can't feel anything luckily there isn't any pain with it. I have been told it is due to damage of the ulnar nerve, but inlooking at it anothwer way at least it looks normal there are no deformities and it doesn't hurt so I should be greatful. My hubby is a doer and I have to say he has spoiled me rotten. It seems like only yesterday that I finaly got him broke from cutting up my meat. He did it then to be helpful, now I half to rely on him to do it or plan on makig a bigmess with the food everywhere else, but in my plate. I honestly think it is the little things that bother me more than the big things. I am just not ready to return to diapers yet, so I will go back to the urologist to see if something else can be done. If you are a man then shut your eys to what I am going to say next. When on earth are they going to let women develope pads where they will stay where you put them. It has to be a man who designs them. Also if you are a woman and you do design them and think I am stepping on your toes I am go back and redesign them and please oh please fix them where the sticky stuff stays against the Panties. Do you have any idea how uncomfortable it is to pull those things free. If you do not then I will get a bandaide and place it approximately the same area pull it off and maybe then you will understand. I think all of us hate giving up our abilities slowly one at a time. I know with me things I used to yell about my husband doing I am very appreciative of him doing them now. I think most of all we have to love and share with our caregivers, but also I think it helps if they could just get away for awhile. As the matter of fact I think it should be mandatory or at least encouraged even if you might have to get a neighbor to stay with them a couple of hours. Luckily I am not that far gone yet and and I think it will still be awhile before I am and I figure there will be a cure before then just in the nick of time to save enough of my brain that it can be restored. OK so I got back on that soap box again, but I had to get this out and it would be nice to know if others have had this problem at 51. Hugs to all, Pittypat
Hi Sandy, Is there a way to flip this to the most current topic? It was confusing till Bren said to go all the way to the bottom. I get confused easily anyhow.
I wanted to let Pittypat know that there is a drug that will help with her incontinence. It is called DDAVP and her Dr. can order it. I take mine at night but it seems to help during the day too. I also wanted to add that laxitives are addictive and not good for you. I also have slowing and take two Fiber Con's each night and it works for me without the laxitive effect. You may want to talk to your Dr.first about how to come off laxitives slowly so you don't bind up.
Wishing you The Best, Clem :)
Hello ypittyPat,
Gee girlfriend! You are having a rough go of it. I wish I could help. I am not having difficulty with incontinence. But I have had an accident if I get froze somewhere and all meds have lost their umph and my bladder will get a tremor...well you can imagine it is downhill from there. I imagine your coughing did not help the situation. I do know that cold medicines can give you some urinary track difficulty. Please tell us what doc says when you go back to him.
Oh, and Pat, feel at home here...sometimes the only that helps is a bold honesty. In some situation seriousness is called for. Please always feel at home here Pat. Hope you get to feeling better soon.
faith and hope,
Sandy
sandy, Sorry if I was too bold but have spoken to Pittypat on PLWP2 board already. Some of us have the heavy duty stuff like incontinence which is truely disabling. If you need help in the same department why not share? Is it in bad taste to try and help? I'm sorry I can't save quarters for your golf tournement but I have bigger priorities. I have TOS in my right arm so bad I could never swing a golf club and need surgery. You seem to only care about you and that is unfortunate.
Clem :(
Hi Sandy!
It's me again toadie, hehehe
I have to tell you how much I have missed you and all the plwp gang. I've been hibernating a little. But, thanks to some dear friends like you, who listen and help me sort things out, I'm feeling lots better.
Sometimes, I feel like I'm imposing because I know that you are going through a lot of stuff, too. You, Toad, (and a few others) have given me an unconditional love and acceptance that often helps me find my balance again. You have held my hand when things were dark for me, even when you've been going thru tough times, dealing with pain, pd and life in general.
Ok, I'm done being sentimental for a little while. Want to go for a bike ride?
Take care,rest well and in comfort,
love toadie
Ypittypat, I have some problems with incontinence also and have never discussed it with anyone before. Mine is relatively minor compared to yours; actually mine may be due more to age than PD. But whatever, it's still incontinence. I got a catalogue in my mail one day and they had advertised ladies panties especially designed for our problem. They are a little pricey but comfortable and they look nice. You can even get them with lace and a high cut leg...this just helps to remind you that you are still a woman. The catalogue is "As We Change" and their URL is www.aswechange.com. They have three different stules, BC408, BC028 and BC027. I find them comfortable and feminine. The pads just didn't cut it for me either. Hope this helps.
Hugs, Sylvia
Hello my dear sweet, caring, unselfish, loving, generous, etc. sandy. I've just realized your site is the 1st I visit when I turn on computer. Lifts my spirits for the rest of the day, knowing there is a porch swing to sit on. (Mine still isn't put together) I appreciate your encouragement and love you give to everyone so unselfishly. You are a God send to us. Thank you from the bottom of my heart. Caz
Dear Sandy, just want you to know that i am definitely appealiing the appeal for my unemployment. I realize that i probably won't win but have nothing to loose and a lot to gain. At least someone will have to listen to my case if nothing else. jFor those of you on the porch who don't know, last June i quit my job as a geriatric social worker because i was about to be terminated. For what reason, i guess i will never know except that i don't kiss up and brown nose. i was the 5th social worker in 1 1/2 years for that company. Most only stayed a day or two and left. I actually stayed the longest. On the day i resigned, i had no idea that i would return home that evening unemployed. i loved my job and needed the health insurance. To make a long story short, i didn't apply for unemployment till this past January because i didn't know that i could apply for this since i wasn't quote fired. I did not mention my pd to the interviewer only that i quit before they fired me to save face and to not have to put that on future resumes, etc. and because of all the added job duties that made my job impossible to do in a 40 hour week. I was denied unemployment benefits based on their opinion == that i quit for no just cause and no medical reason. hubby felt i should not appeal because of the stress that would make my pd worse. this has been eating at me and i finally decided to go for it. i deserve it and yes i have not only just cause but also medical reason for leaving the job. i wrote a long letter and sent to the appeals office in Austin. A few days ago, i received a letter stating that i appealed too late, past the deadline so the Appeals Tribunal cannot hear my case. i can however appeal to the Commission and that is what i am doing today. I just hope and pray that whoever does hear my case will honestly and lovingly read my letters and give careful consideration to what decision they make. The company i left has already hired two more social workers since i left and fired one. Doesn't say much for their management style. My heart goes out to the many residents in the nursing home whose needs are not being met. So now everyone knows what is going on with Luvstosew. i am still trying to get my sewing business off the ground. Sandy thanks for your words of encouragement and vote of confidence. you continue to touch my life in so many wonderful ways. i cherish our friendship and thank the good Lord daily for Bren and Nan who first conceived PLWP. Through them i met you, sylvia, shari, carolyn, toadie, toad, fig, lynda, janet, patty, pittypat, cyndy, ryan, Joan, lil, mike, his mom, neil, periwinkly, pegleg, chris, chris's hubby, and so many more wonderful people. All you guys, keep posting. i love you all. Luvstosew
Thank you Clementine for the helpful words for ypittypat. You and your helpful words of encouragement are always welcome here.
Sylvia, I thank you for the info on the panties. I should have remembered that my mother wears those. With her emphasema(sp) and her coughing she has difficulty with incontinence. She raves about these panties. She says they are worth the extra money because of the comfort they offer.
Toadie, my dear sweet Toadie. I am glad to hear you are coming out of the hibernation...did you see any bears? hehe I would love to go for a bike ride!!! To hear the rolling thunder.....music to my ears...sunshine to a cloudy day...you get my meaning.
I have news for you, toadie and others too. Anyone that comes here is always welcome. I do not see anyone as imposing. All of us have our good days and bad days and yes, even some horrible days. We all stand on equal ground here. A common thread is the PD but the bond that is felt here and hopefully with all plwps is our love and compassion for one another. None of us are perfect, but human. I love you my friend....okay enough said...for now.
Caz, you are a joy of mine and have been for nearly 2 1/2 years. Your a very strong and classy lady. On days that I am dealing with the blues some of the memories that God so gently reminds me of are, your continued dedication to all of us, your love and sense of pride for your family and friends, remembering your hard work on that one-of-a-kind lovely quilt that you organized and put together for the Habitat couple, Christy and Jim. I believe what stirs and warms my spirit the most is your thoughtful and loving heart. I love you lady.
Diane, thanks so much for sharing with us here on the Porch about your situation with unemployment and going for your right to an appeal. This will prove helpful to a lot of people going through the same thing or have yet to go through it. I know if I had it many years ago I may have handled my unemployment and appeals with more strength. It is not an easy thing; but with friends and loved ones we can lend support.
All of you that continue to get out of bed each day and put one foot in front of the other are an inspiration to me and the valiant effort to come here and share your lives with all of us continue to humble me....
faith and hope,
Sandy
HELLO EVERYONE!!! It is my night to be on the computer, so I wanted to come to my FAVORITE place!!! How is everyone? I have sooooo many comments to read up on, but it is my night to be on the computer, with no time limit...lol...hehehe... so read I will do!!! I missed all of you and can't wait to start reading. But first let me tell you that hubby went to his neuro to get his meds changed and he is doing better, It was the right change for him at this time. He now is taking more Mirapex and less carbidopa/levodopa. I had him take his concerns and questons list that Sandy was soooo nice to post on the porch. THANKS SANDY!!! It helped him, for he is a man of little words. Well that is all that is new here, except that the weather has been beautiful and cabin fever is over!!! Well I hope all is well with my porch friends who I love and miss!!! But now I must go and read hehehe, I say with a smile. Take care, be happy, stay healthy...Lots of sunshine sent your way....(((((hugs)))))....Kia....aka....kmt.... P.S Did I mention I missed all of you?
Hello Kia,
Where have you been all of my life? It is wonderful to see you here. We missed you bunches. I am really happy hubby is doing better since his medication adjustment. Most of the time it just takes a minor tweaking.
Kia, you spread so much sunshine here by showing your love and concern for your hubby all of us Parkies. Have I told you we missed you? BUNCHES!!
faith and hope,
Sandy
Hello Sandy, do u have a ypwp meeting place (cause you were once a ypwp -onset-) and if so what date & time?
Thank you kindly Jean~
Jean, I am not too sure what you are speaking of. Yes I have always been a young early-onset person. Have you joined PLWP? By a meeting place, do you mean a meeting place by way of the internet? Or do you mean an actual physical building to meet at for a support group?
Thanks for stopping by here. I am up with insomnia...I believe insomnia has waged a war on my brain and my brain is being stubborn. The insomnia and my brain is playing tug of war.
Jean I would be more than happy to help you. Have we met? I just read your post again. When I am battling insomnia, I have to read something a few times please forgive me. I, at one time, tried to get a support group formed through the APDA. I believe I am still registered as a contact for the state of North Carolina. Anyway, the group did not ever get formed. The PWP's I was in contact with then are either too far away....or transportation would have been a difficulty. Do you live near me?
hope and faith,
Sandy
Sandy, I actually sent the appeal letter off certified mail today. we will see what/if something happens. I haven't accomplished much this week. It has taken me all week to recuperate from the trip last weekend. Didn't realize i exerted so much phsical/emotional energy. And yes, it hit me several days ago and i have been tearful most of week. Better today. These get togethers are the best but there is an emotional down side when you get home. i am looking forward to the Unity Walk in September. Have a great evening. Luvstosew
Hello Everybody:
Kia, you think you missed us? How do you think we felt? WE MISSED YOU! But if we can only have you once a week, so be it. Once a week is better than none at all. Welcome Back!
Diane it took me forever to get over the Rally so I can imagine how you were after BTB. I am looking forward to the Unity Walk also. And you go girl. Get that disability!
I had my stress test with the cardiologist and it was not wonderful. After I finished all I could do on the treadmill and was sitting in the chair while the doc played with the computer, I started to fibrillate. He yelled at me to cough and I did and that ended the fibrillation. If I hadn't been able to cough they would have put the paddles to me. Karen my PD nurse in my neuro's office called me later that afternoon and said to me, "Do you know you scared the S--T our of Dr. V.?" The big problem is not that I fibrillated but that I remained totally asymptomatic. So this comimg week I will be going to Baltimore to Johns Hopkins Hospital for a heart catheterization and EPS study (whatever that is). We still don't know whether this heart business is study drug induced or is actually a problem that started before the drug study.
I can't tell you how I'm feeling right now, because I simply can't identify all the emotions. I guess actually it boils down to being scared. I don't do well when I don't know what's going on.
I love and need you all and I'll try and keep you posted. Thanks, Sylvia
Hello Sylvia,
You can count on us to be here for you girl. I just wish I could be there with you and your daughter the day you have the test done. I will be continuing to keep you in my thoughts and prayers. Please do keep us informed.
How is the database coming? I tried calling you today and got a busy signal...so evidently someone was busy....wink and grin...
Know that we all love you Sylvia. You are not alone ......
Diane,
Yes, you go girl...I am glad you finally got the appeal mailed off. We will be thinking positive thoughts and prayers for you as well. I am sorry to hear you have come down with the blues...anything I can do? I know you must be missing Shari so badly. I know the bond that was strengthened from your visit to Canada. Be good to yourself and take time to work through your feelings and emotions. Sounds like you and SYlvia are going through some of the same thing but from different causes. God Bless the both of you!!!
Faith and hope,
Sandy
I was wondering where to find blue sunglasses that help bthe tremors caused by Parkinsons? Have you known of anyone getting help for these by using the blue glasses?
Good morning,
I have never heard of using blue tinted glasses for the tremor in the eyes. I will have to research it because I do have a slight tremor in the eyes. Off I go to research......
faith and hope,
Sandy
Hi Sandy and the rest of the crew. I say that because as I make my appointmet Monday with the urologist. I fear that I am about to aboard a ship and go through some tough waters. Thank you Sandy, Clem and Sylvia For all your suggestions. hey these are real problems and very common with PD patient's. They are natural things that take place in our everyday lives I was talking to one of the girls this morning and told her I think my next nickname might be ppanpoopsoops! LOL!
My digestive system has been against me from the day I was born instead of dring a bottle of milk, I carried a bottle of prune juice. Clem I already take Detrol for the urinary problem and it has helped. Nothing helps though if you are coughing sneezing, or walking when there is urie in your bladder. The urologist has told me each visit that I was probably going to have to have surgery and not too far off. So I quit going and have continued taking the Detrol, however it is getting worse and along with the Bronchitis I also have had 2 urinary tract infections and I don't think this last one is cleared up even after antibiotics. Actually I had a stroke and forgot about an appoitment with him so it was easier not to go.
Getting back to my bowels. I have irritable bowel Syndrome, and a pretty good sized rectocele to boot. I have yet to see a doctor that even wants to try surgery on it. They tell me I will be worse off than I am now. They have to medicate me heavily to do a colonoscopy because there is so much pain due to adhesions and such. so ihave been told that unless it was a matter of life and death they are all afraid of my colon. I stll have my appendix for that very reason. Fibercon and Metamucil makes things wore because it makes the stools so soft and I have pracically no muscle tone left it just seems to squish that stuff into the little pouches. I am not truly constipated because I do have stolls more than once a day, however I just keep filling up and backing up until they make me really sick. I understand about the laxitives those got me into trouble and in the hospital once I got off them and I was told then to takas little as posible of any medicines as the Dr. felt they encouraged the diverticulosis or made it worse, but I find that about every 6 mos or so I need a good cleaning out to start fresh again. So I use my diet to help keep things under control. My problems though are mechanical rather than just slowness. How much PD has affected this I don't know. I do know it has been worse thogh since the PD and even worse yet since the stroke a year ago. I shall keep you informed about what he says though. Because of a precancerous polyp. I have to have a colonoscopy about every year now and that is no fun. Or at least not for me anyway.
I had intended to tell you all about the wonderful time I had with my Grand daughter yesterday. We went on a feather huntand she took home a whole sack of feathers from ducks, chickens, Roosters, and guineas to show to her baby sister. She says the cutest things she wants to be a Dr. and she says she and she is going to work in the heart. She brought in a whale Pez candy thing and put a small piece of red cloth in there and says now you have to swirl it around like this and then smoooth it out and that will protect the heart. She is 3 y/o. She asked me about the sore on my thigh and I told her that was a little skin caner and she said " how did it get there?" I told her it was from being out in the sun too long without wearing skin protection. I had it removed Friday along with a couple of others that weren't as bad. Anyway she turned awy from me and said "Now kids that is what happens if yyou go out in the sun without skin protection. You get those little cancers and if you don't take care of them they will eat off your leg." So funny! LOL
Also I wanted to let you know my puppies are doing really good. They got there tails bobbed and grown maybe 1-2 inches. Nikki and Natalie the mamas are wanting to come home sooo bad. I miss them too! Well that's all folks sorry for the lengthy note, but maybe it will put someone to sleep. Then I would have done some good. God Bless and Hugs to all, ypittypat
Hello Ypittypat,
I am glad you stopped by and caught us up on how you are doing. I am sorry you are still experiencing difficulties. I,also am one with a very slow digestive system. I really have to keep track of everything I eat. I am realizing as I get older that some of the things I still love to eat I can no longer take a chance of eating because of the difficulties it can cause me. Any upset can aggravate the PD.
Your grandaughter simply sounds adorable. It is so wonderful too see the faith that a young child cahave. By the way you speak of her I can tell there is a great amount of love shared between the two of you. Just reading your post today put a smile on my face and a warm feeling in my heart. You have so many difficulties Pat and yet you continue to face each new day with a strength that I find inspiring.
How are the pups today? I love yorkies......I would have a lot of trouble letting them go to new homes.....take care and God bless you!
faith and hope, Sandy
blue glasses Dave, In response to your question to Alan re: blue filters to calm his dyskinesia and asthma I will jump in and add my two bits. I am 50 year old woman with PD. My greatest problem with my PD used to occur when trying to walk (or breathe) in bright afternoon sunlight. I tried the blue filters and now have a pair of my prescription glasses tinted blue.......I have dramatic improvement in my movement while wearing blue glasses. (Might add that I tried this after having had lunch with Alan and Tom Reiss). I have a dramatic reduction in my rigidity, and fine motor skills when wearing the blue glasses. Do not know what is causing the change in movement. I have discussed this with several neurologists as of yet we have no answers. Try dark blue plastic or cellophane covering your eyes. See if you have any change in movement. I will also add that I experience very negative changes in my pd with other colors of filters. Do not try using these filters the first time when you are by yourself, just as a precaution.
Good morning!!
It is almost 5:00 in the morning and I finally just gave up getting any sleep....what does everyone have planned today?
faith and hope,
Sandy
Rise and shine!!
I am going to be going to do a workout...make a run to wal-mart, try to get laundry done....busy ..busy...
Luvstosew where are you girl? Here is a smile to brighten your day...
Sylvia....what is going on today?
Let us know when your test is scheduled please.....
Everyone have a blessed day. Keep up the fight! We are in this together.
Faith and hope,
Sandy
Friends are there, smile or tear.
Friends are there, happiness or fear.
Friends are fun and friends are clever,
And the ties that bind friends will last forever.
Harmony Davis, age 14....Chicken Soup For The Kid's Soul
hi sandy sorry i have been silent for awhile. there is alot on my mind. the btb conference was so very wonderful! especially the experience of meeting luvstosew - my "sis" all the others i met in person for the first time exceeded my expectations and welcomed me with open arms. i am certainly looking forward to the next time. sandy, i am very concerned for a dear friend of ours named steve. today he has to have surgery on a brain tumour and of course the outcome is the frightening part. i would appreciate your prayers for him and his wife and young family. maybe with all the positive thoughts sent his way there will be a happy result. steve was very supportive of me during my tests to discover pd a few years back. He is 41. thanks for your love and support. will advise. shari
hi sandy sorry i have been silent for awhile. there is alot on my mind. the btb conference was so very wonderful! especially the experience of meeting luvstosew - my "sis" all the others i met in person for the first time exceeded my expectations and welcomed me with open arms. i am certainly looking forward to the next time. sandy, i am very concerned for a dear friend of ours named steve. today he has to have surgery on a brain tumour and of course the outcome is the frightening part. i would appreciate your prayers for him and his wife and young family. maybe with all the positive thoughts sent his way there will be a happy result. steve was very supportive of me during my tests to discover pd a few years back. He is 41. thanks for your love and support. will advise. shari
Shari,
Good morning to you my sweet friend. Please do not apologize for not popping in. Life has a way of getting in the way sometimes. I am glad you had a wonderful time at BTB conference. Luvstosew is definitely a treasure to all of us.
You can count on me placing Steve on the prayer list. I have already started sending up positive thoughts and prayers. It is always difficult seeing those we love go through troublesome times with their health. Please do keep us advised.
Faith and hope,
Sandy
Sandy, I went to bed around midnight last night, and took 2 Tylenol PM. They absolutely knocked me out and I slept until 10:30 this morning. Now I'm dopey. There's just no pleasing me sometimes. I have nothing on for today, just waiting for a call from the doctor's office to tell me when my cath and EPS is scheduled. I am really getting impatient about this. I want it done and over so I can get on with my life and my PD. For all my sleep I don't appear to be in a very good mood. I guess that could be because with all this stuff about my heart last week, I decided it was past time for me to make my will and that is what is on my schedule today.
Hugs, Sylvia
God love ya Sylvia. Are you writing your own will? If you can call me later this evening and let me know if you have gotten your appointment for tests I would appreciate it.
I am sorry that it took your heart to bring you to making a will. I have one written up but I need to get it finalized. I understand where you are walking Sylvia. Facing something that is unknown and not having a handle on the outcome can be very distressing. I know it is also difficult to see a bright side to your situation. If you hold onto one thing today, please know we all love you so very much. You have had an impact on a lot of lives here at PLWP. You have a place here. You do have something to do with your life. So take the time to do what needs to be done....I will be keeping you in my positive thoughts today.
love ya babe, Sandy
Hi Sandy, Shari, and Sylvia, sorry, computer monitor died on me today. Hubby talked to it sweetly and guess what, it worked like a gem. Darn thing, wouldn't listen to me lol lol!!!!! just got it working a few minutes ago so have been out of touch with everyone today. Shari, Mike and I sent up prayers for Steve and we added him to our church prayer list also. I miss you sis. Hope to catch you online tonight.
Sylvia, hang in there, soon this mess will be over. Maybe the testing is a good thing although a definite inconvenience. If something needs fixing you will know and be able to take care of it now while you are young, yes you are still young!!!!! if nothing is wrong, which we all hope and pray is the case, then once and for all you can truly put this to rest and start living again. It is ok to be mad, i'd be fuming, having to wait is not the easiest thing to do. I agree with Sandy, you are terrific and making such a difference in our lives. You hang in there.....it won't be long. Hey, think about sharing a hotel room with my dtr. and me in New York at the Unity Walk. Would love to have you and your sis join us. I'm expecting your tests to all go well and you be able to join us in sept. Our love and prayers go with you.
Haven't made my will yet, oops, will add to my list when i find where i put it lol lol. Sandy is a great list maker and shared this with me in past, great idea. Only problem is i still have to keep up with the list, ooops, oh well, something to work on tomorrow. Sandy, i did start a list,,,,,,,,,,must be under the mound of papers on computer table, oh is that what that is, lol lol. will write tomorrow and share what i have been doing today, sewing, sewing, sewing. much love to all, Luvstosew
Hi Sandy,
I'm sorry I haven't been in contact for a few days. My daughter Michaela moved into a house and the computer was packed! If you can picture me, I'm kneeling on the floor surrounded by boxes, but with my PD (persistent determination) I was determined to get a short message to you. I have to go now. Be back in a couple of days. Now I'm down on the floor, its debatable whether I'll ever get up again! Best wishes, God Bless everyone. Pauline
Pauline and Luvstosew,
It is now 1:25 am. I am just now going to bed. I have stayed busy all day....I beg your patience and understanding. I promise an answer to your posts tomorrow. It has been one of those kind of days that you really are not too sure which way is up. Rest well everyone...going to bed...and hopefully catch a few winks.
faith and hope,
Sandy
Good morning sandy, you asked yesterday what i'm up to .......getting ready for a program i'm suppose to give next week at a quilt quild. i'm excited but a little nervous. Haven't gotten up and spoken in front of a group since being dx'd with PD. I will be talking about embellishing clothing, etc. Right now i am trying to finish some projects to use as samples and make a few new ones. made a wedding pillow yesterday for a lady, think i may take it too. need to finish backing and quilting on a wall hanging and snippet creation but may leave as they are for now. house needs major cleaning but wanted to get thoughts together for program so i won't worry so much. money i get from this to go towards unity walk. im getting excited. plus i need to start on my contribution to Joan's golf tournament,, and there is a contest i want to enter this summer, where you have to use a certain amount of certain material and create something wearable, Hoffman Challenge. ihave everything i need and design, just need get started. Guess that fills you in a little. Not much going on here lol lol lol. take care sweetie. hollar if you need me. Luvstosew
Hello my dear friends,
I have had a rather busy day. I have been to get my haircut, to the grocery store, seen my parents, been to see my apartment manager for recertification. I am going out of town on thursday. I am hoping that you all can manage the porch while I am gone. I will be back in town Monday May 7th. I will have Nancy Mullen pop over to field any questions that may need close attention.
Today has been a beautiful day, not too hot and not too cold, just right. Flowers are in bloom. Bees are a buzzin', birds are a chirpin'. I love spring time.
Has everyone seen the PLWP Virtuality Magazine for the month of May? Wow, Pwnkle is doing a fantabulous job!! I was really moved to see all the talent that we parkies and parkies' caregiviers have.
Well it is time for supper....hope all is well today....has everyone seen the sunshine today....somewhere.... whether it be in your heart or in the sky?
faith and hope,
Sandy
Dear Friends, I have sad news to share with you. This morning mom passed away. She struggled hard over the weekend in the hospital. She was admitted last Wednesday for dialysis after an episode of kidney failure early last week. Normally the treatmemts would put her back on top but not this time. Her body had just had all it could handle and the dialysis seemed to just make her sicker. Her body was worn out and by last night she no longer recognized anyone nor was able to respond. It came down to taking extreme measures to keep her alive which was not what any of us wanted, especially mom. So the decision was made to stop treatment. We all loved mom too much to be selfish at this point. It was time to let her go. She is without pain and suffering for the first time in many years and I hope that we can all find some comfort in that. She will of course be terribly missed but I know that she is finally at peace and the gifts she has left behind in the hearts of so many will continue to live, especially in me and my family. Peace to you all.
"If you hear a voice within you say 'you cannot paint,' then by all means paint, and that voice will be silenced." - Vincent Van Gogh
www.slick-graphics.com
Jen,
Honey, we all are remembering you and yours during your time of loss. We love you dearly and hope that you will soon be able to remember the good memories instead the times of your Mom's failing health. She definitely had a strong spirit and was a very beautiful person and Mom. We are here...More than anything I wish I could be there to hold your hand and catch your tears. With love and prayers...Sandy
CONGRATULATIONS Y'ALL! Over 6,000 hits since the first of November. Quite a feat if you ask me huh! Nan and I are so very proud of the porch. Not only is Sandy doing a superb job, all of you are as well. I read the porch on a daily basis, and it's humbling the way you help each other and band together to help new people. Love you guys!
Love and hope, Bren
Good Morning,
It is 7:30 am. The sun is on the rise. Again, I have a lot to do today. I need to go pick up some prescriptions, go to Social Services, come home and pack to go out of town.
Thanks so much for all the support Brenda and Nan! You guys are terrific. We remember each and everyday, if it were not for the two of you and PD, there would be no PLWP or Porch!! We love you too!! I 'm on the run..gotta put make-up on. It would not be a good start to scare the social worker with my face without make-up!! EEEEEEEEEEEEKKKKKKKKKKKKKKKKKK!!
faith and hope,
Sandy
first a note to jen - our condolences on the loss of your dear mom. our love goes out to you and your family.
and a great big giant thank you to all who said a prayer for our dear friend steve who had surgery on a brain tumour on this past monday. i just had word that he is doing so well he is waiting on a bed in a regular ward and doesn't need the services of the ICU. he was able to recognize his family on tuesday and i can't tell you how happy we are to hear good news. thanks my family for your support. shari
first a note to jen - our condolences on the loss of your dear mom. our love goes out to you and your family.
and a great big giant thank you to all who said a prayer for our dear friend steve who had surgery on a brain tumour on this past monday. i just had word that he is doing so well he is waiting on a bed in a regular ward and doesn't need the services of the ICU. he was able to recognize his family on tuesday and i can't tell you how happy we are to hear good news. thanks my family for your support. shari
first a note to jen - our condolences on the loss of your dear mom. our love goes out to you and your family.
and a great big giant thank you to all who said a prayer for our dear friend steve who had surgery on a brain tumour on this past monday. i just had word that he is doing so well he is waiting on a bed in a regular ward and doesn't need the services of the ICU. he was able to recognize his family on tuesday and i can't tell you how happy we are to hear good news. thanks my family for your support. shari
first a note to jen - our condolences on the loss of your dear mom. our love goes out to you and your family.
and a great big giant thank you to all who said a prayer for our dear friend steve who had surgery on a brain tumour on this past monday. i just had word that he is doing so well he is waiting on a bed in a regular ward and doesn't need the services of the ICU. he was able to recognize his family on tuesday and i can't tell you how happy we are to hear good news. thanks my family for your support. shari
Hello Shari,
It is good to hear some good news today. Thank you for sharing the news of your friend. I will continue with positive thoughts and prayers!! It is good to see you sweetie!
faith and hope,
Sandy
I received the following today in my e-mail. Sylvia
Dear Friends, Many have asked me if they could send flowers or donate to a memorial in mom's name. So my brother Chris had given me the information on donations to a memorial and I am passing it along to all on my list. This is not a solicitation of course. I just wanted everyone to know that if you are considering sending flowers or plants, we would prefer that you would donate to mom's memorial instead. Thank you so very much for the outpouring of love and support. The emails and phone calls have been so wonderful. It is such a comfort to know that so many care. I love you all. Jen
Donations in the name of Jean Morse Cockerill may be made to : Eisenhower Medical Center Kidney Fund 39000 Bob Hope Drive Rancho Mirage, CA 92270
"If you hear a voice within you say 'you cannot paint,' then by all means paint, and that voice will be silenced." - Vincent Van Gogh
www.slick-graphics.com
Hello Sandy, I just want jen to know that my heart and prayers go out to her and her family. The hardest loss in the whole world for me even though I too thought I had prpared my self for. May God be with you everytime the pain of loss is felt. I know you will miss her terribly.
Sandy, my husband worries about me terribly and he is always listening for things that he thinks might make me feel better. His Thing today was Chitisol which is an unapproved dietary supplement for wt Loss. Chitisol. The good thing is that the last few months there have been moments when he seems to open up and want to talk about this disease. I have given him literature to read that I didn't think he had ever touched and yet today he told me he has read different materials that I have given to him. He has always been very supportive, but didn't ever want to talkkkkk about it. So in someways I see progress. I have encouraged him to talk with some of the men here, but right now he says no. Today he said that he thinks I would feel a lot better if I lost some weight and perhaps he is right It might make some difference, but I think he expects it to do more than it actually will. I looked the Chitisol up and showed him why I could not take it. So he was ready to let it drop. He says he knows it is not my eating. There is nothing you can do, but maybe there is someone out there who has a trying to deny husband and could give me an idea or two. I'm sure that time will probably take care of most of it. I am truly happy the board is doing well. The Puppies are still growing and Rachel may come back this Saturday. I hope so. I am starting to get in the mood to play 3 again. I love ya all,ypittypat
Another day, simply beautiful day, here in North Carolina. I hope everyone had a day that can be looked on and counted as a blessing. Due to some unexpected turn of events I will not be going to Michigan tomorrow. I was going to be traveling and participating in Chy Casavant's Traveling with Parkinson's Parkython. I am let down...kind of blue.....but I cannot stay that way long. I won't stay that way long.
Today, a wonderful friend that we all consider just as sweet as can be, called me. This friend would be Sylvia. She had received some news today that had her a little blue too. (I will leave it up to Sylvia to tell you.) She had not seen me online today and expressed her concern by giving me a call. After sharing our day's events together we were able to at least feel a little less troubled. Yes, I am still just a tiny bit blue; but, it is hard to stay that way when God so graciously gives me reminders of the blessings that are in my life. The blessings in my life are my friends, the clothes on my back, the shoes on my feet, the shelter that I safely dwell in, the bed that has the pillow that I can lay my head on each night with peace in my heart, and the food on my table. The most precious blessing and gift of all is the forgiveness I find at the foot of my Savior. On the days I feel like I have failed, God always reminds me of His unending love. Another thing that is precious to me is the unconditional love that I find daily here on "The Porch". I love you all.
faith and hope, Sandy
Oh, pshaw, Sandy. When people read your post, somebody will think I really care. LOL.
OK, here's the skinny on Sylvia's day (poor choice of words there). You all know I had been dropped from the drug study on April 17th. Yesterday I had an appt. w/my neuro (whom I adore). I was in the office for about 2 hrs and he was there w/me most of that time, talking with me. Notice I said "with me" not "to me." There's a big difference. Anyway he had asked permission to have my study unblinded and the word came back today that I was on the placebo not the drug. This means that my heart condition probably pre-dated the drug study. Now my guardian angel has certainly been working overtime, although I must say her methods could have been a little less drastic. Nevertheless, my mother always told me to never look a gift horse in the mouth, whatever that means, so I am grateful for my angel's favors. If I had never come down with PD I would never have been in the drug study and the chances are very good I would never have discovered the heart problem until I keeled over dead because I am totally asymptomatic.
Next Thursday I will be going into Baltimore, to Johns Hopkins Hospital for a heart catheterization to be followed up 2 hrs later (hopefully) by an EP (Electrophysiology) study. Chances are good that I will have to spend the night in the hospital but then if all is well, I can come home on Friday. The doctors do not think they are going to find any blockages which means it must be some kind of electrical problem. There is a way to fix that (not a pacemaker) that my daughter, the nurse, told me about but I can't remember the name. If they do it to me, I'll let you know what it is.
Any and all prayers will be gratefully accepted.
Love to all, Sylvia
FUNDRAISER"S MEETING 9:00 PM in PLWP 2!!!
BE THERE OR BE SQUARE!!!
Sandy
Ypittypat,
Sorry to hear you are having such a difficult time Pat. I can tell you that extra weight can make everything about pd worse. At least it did for me. I am only 5'3" tall. Back when Tasmar put a scare into the medical field because of possible liver damage, I was placed on Mirapex...well with the Mirapex I put on 35 pounds. this is way too much weight. I went for a size 10 to a size 14/16 really quick! Well this extra weight caused me to nearly double my intake of sinemet, my arthritis gave me a fit, the dyskinesias were worse becuase of the increased sinemet. To make a long story short....I ended up coming off of the Mirapex and going back on Tasmar. I lost the weight, lessened my intake of sinemet. I still am dealing with too much pain....but I can move around better now.
I hope you get some responses Pat that may offer you some help. I hope you feel welcome to come here anytime you feel the need. Glad to hear pups are doing good. Take care ....
faith and hope,
Sandy
hello, my name is jennifer, and i am doing a health project on parkinsons disease, and i need to interview someone with it or a doctor who knows alot about it. i was wondering if maybe i could interview you, i dont have to give out your name if you dont want me to. if you could just get back to me with an answer. thnks very much jenn
hello, my name is jennifer, and i am doing a health project on parkinsons disease, and i need to interview someone with it or a doctor who knows alot about it. i was wondering if maybe i could interview you, i dont have to give out your name if you dont want me to. if you could just get back to me with an answer. thanks very much jenn
hi jenn,
of course you may interview me. My e-mail is sassypwp@statesville.net .
faith and hope,
Sandy
Good morning everyone! WOW what a glorius, sun shiny day down here in God's country, Texas lol! Just wanted to wish you all the very best today! Last night Sylvia and I caught each other online and what a true joy to talk and talk. I just know something good is about to happen for you Sylvia. Pat, wish i could hold and love on those puppies. Puppies are the best therapy, better than chocolate! lol Sandy, you have a great time this weekend and don't worry about us. We will all be here for each other. may not have all the answers but we can hit and miss together. Kia, are you ok. Haven't heard from you in awhile? Shari, today is your big day. Enjoy your trip and home away from home. Have the best weeekend of fun nd relaxation, you deserve it. Give Becky (dog) a hug for me. Toadie send us more poems, your writings are absolutely wonderful. Hey guys, if yoiu haven't seen Virtuality, go look. Periwinkle out did herself again, wow, super, the best! got to run to meeting, luv ya, Luvstosew
Another day, simply beautiful day, here in North Carolina. I hope everyone had a day that can be looked on and counted as a blessing. Due to some unexpected turn of events I will not be going to Michigan tomorrow. I was going to be traveling and participating in Chy Casavant's Traveling with Parkinson's Parkython. I am let down...kind of blue.....but I cannot stay that way long. I won't stay that way long.
Today, a wonderful friend that we all consider just as sweet as can be, called me. This friend would be Sylvia. She had received some news today that had her a little blue too. (I will leave it up to Sylvia to tell you.) She had not seen me online today and expressed her concern by giving me a call. After sharing our day's events together we were able to at least feel a little less troubled. Yes, I am still just a tiny bit blue; but, it is hard to stay that way when God so graciously gives me reminders of the blessings that are in my life. The blessings in my life are my friends, the clothes on my back, the shoes on my feet, the shelter that I safely dwell in, the bed that has the pillow that I can lay my head on each night with peace in my heart, and the food on my table. The most precious blessing and gift of all is the forgiveness I find at the foot of my Savior. On the days I feel like I have failed, God always reminds me of His unending love. Another thing that is precious to me is the unconditional love that I find daily here on "The Porch". I love you all. So I will be here to keep my eye on the Porch.
faith and hope, Sandy
Hi Sandy ! Just passing through today. New to the web so I'm new to the nieborhood. Next time I'll stop by with a coffee and we can chat. Hope you are doing well! Let me introduce myself now so I don't have to later. Name's AL , 48 ,have been living with PD the last 16yrs. It is so nice to know that I now have a place to visit and discuss things . Thank you so much for having this page! Hope to talk wiht you soon! Till then keep up the good work, stay positivand may God bless !
Hello and nice to meet you, Al. I am glad you made it here to the Porch. Did you join PLWP? Please come back anytime ....I hope you are having a blessed day Al.
faith and hope,
Sandy
Sylvia, I am thinking of you and hoping all is well, you are in my prayers. God bless you Luvstosew, I'm doing just fine thanks, and I hope everything with you is going well. Sandy, here is a great big ((((hug))) for you. God bless all of you beautiful people here at the porch and plwp.
Lots of love and sunshine and ((((hugs))) sent your way!
Kia
Hi Luvstosew, I understand you make beautiful items with embroderey. Do you mind if I ask what kind of machine you have. I'm looking at the Viking Rose but don't know if I can justify spending that kind of money. It sure looks like a lot of fun tho. Thanks for any input you can give me. Carol
Dear Sandy, I am so glad I met you tonight in the chat room and you told me ahout the Porch! I have read all through the messages, and feel as though I have found a whole bunch of new friends. Some I knew before, but not well.
By way of introducing myself, I am 65 which is considerably older than most of you, but I am young at heart. Dx'd 5 years ago, and I feel that my worst symptom is my speech deterioration. I just started going to a speech therapist, and I would like to hear from anybody who has had this experience and whether it helped. (marthat7@pacbell.net)
Oh, almost forgot, I am in northern California, in a small town about 90 miles south of SF. I am happily single for over 20 years, and live alone with my cat Cleo. We are just doing fine together. :)
I look forward to sitting on the Porch with you and chatting. Sandy I really admire your upbeat attitude, hope some of it rubs off. martha
Carol, i would love to share with you about my sewing 'machines'. not sure everyone on the porch would like to hear all the details. I can get really carried away. lol lol i get really excited about sewing and embroidery. why don't you email me at dkerbow@earthlink.net and i'll talk your ear off. lol lol not really! To answer your question quickly, i have a Pfaff 7570 and a Bernina Deco 600. And i have some definite opinions about embroidery and sewing machines. i look forward to sharing more soon. i have a dear friend who owns a sewing store and i have spent many, many hours there. Luvstosew
good morning Al and Martha, bear with me, no glasses on this morning so hope what you read is readable lol. just wanted to welcome you both to PLWP and Sandy's Porch. This is my favorite place. when i turn my computer on it just naturally goes right here. YOu will find true love and friendship and caring here. Always feel free to share what is on your heart and no question is too difficult or simple. Sandy is a wealth of knowledge. if she doesn't know the answer she can steer you in the right direction to find it. We all compliment each other and lift each other up. Usually someone has walked in or is walking in the same shoes and can be a real godsend to us all. So glad to have you here. please come often. Martha you are a youngster, just like the rest of us. Glad to have you and Al here. have a great day and weekend! Luvstosew
Hi ya Sandy, this here is good 'ole luvstosew from down Texas way. Been out feeding the chickens, roping them calves, and shooing them horses, just thought i'd take a Texas moment to say hi. Them skeeters are eatin me alive. lol lol lol now those of yu who know me, know i don't live on a ranch but you'd be surprised how many people up north, way up north, think we Texans alll wear ten gallon hats and live on ranches, etc. Not me, don't know what to do with chickens except eat them, couldn't catch a calf if my life depeneded on it, and shooing horses, yea right, i'd get my something kicked. i did have a horse in high school and college nd loved riding. well just thought you all could use a laugh today! Sandy you won't beleive this...i have slept thru the night, all night, for the past three nights. WOW don't know what is happening, but im not complaining. usually only get 3 to 3 1/2 hours sleep. neat, huh! Better get back to sewing, not doing good at roping them calves lol lol. Luvstosew
Luvtosew, we must have been drinking from the same well. I too have slept well the last three nights. Bot was I ever surprised when I woke up and there was daylight in the room and the clock said 7:30. Hope this lasts. You should have plenty of energy now so get sewing girl! You have a presentation and a raffle to get ready for.
Martha, I am so glad to meet you. No I am no longer the oldest one here. I will be 65 in October and I too am still young at heart. I was dxd only last January and until recently have been in a clinical drug study which preempted my taking any other PD drugs. And I am still not on any PD drugs due to some tests that I have to have done. I live in Frederick, Maryland, a bedroom community for both Washington, DC and Baltimore. I have a husband Dana and a cat (Action) Jackson. Since you are obviously a cat person, I have two very funny cat e-mails that I will forward to you. (If anybody else is a cat lover, please let me know so I can send you these two classics.) My two children (one male, 40 and one female 38) live close by and between them I have five grandchildren ranging in age from 8-15. I still work, via the computer and telecommuting, so I have plenty to keep my busy. I can't address your speech problem because I do not have it as yet, but I really hope your speech pathologist will be helpful to you.
Al, I am glad also that you came to the porch and hope you visit often. This is a very caring and supportive place to be where anything can be discussed.
Kia, thanks so much for your thoughts and prayers. I know that as full as the porch has been with positive thoughts I will be fine.
That's all the news that's fit to print right now. More later.
Hugs all around, Sylvia
Hello,
I imagine most of you have been wondering where I have been keeping myself today. I have been in hibernation. I have another bout with the pain...It is really difficult to think clearly while coping with the pain.
I was so pleased to see all of you getting along in such a grand fashion. Martha, I enjoyed our chat just as much as you did. I am glad you found your way here. We hope you visit often. Carol, Luvstosew is the best one to speak with about sewing machines. She made me a beautiful jacket with all of my favorite colors and flowers (Pansies). SHe is truly one of a kind. I love all of you so much. Knowing that all of us feel comfortable coming here and that things can be discussed in an honest and heartfelt way brings joy to my life.
Sylvia, you hang in there babe. We are with you through thick and thin. Please keep us informed.
If I missed anyone, please forgive me..this pain is getting the upper hand today. The sun is shining and it is a beautiful day. God has given me another chance to try to make a difference while living with PD. Keep up the fight my dear ones.
faith and hope,
Sandy
well, here you go, Sandy.. told ya I'd be submitting something.... this is one of my favorite and most recent poems. It is right now in the process of being judged in 2 contests.. will let ya know the outcome.
Unseasoned Wood The bicycle lay beside my driveway. Your only possession is tossed askew and is resting from your flight. I know you have again sought refuge Here in your temporary sanctuary
In the distance is the sound of a hammer carefully driving your release into a nail. The juvenile carpenter constructing something, anything that you can have complete control over.
I approach your blossoming masculinity, surveying your surroundings for evidence to tell me what is wrong, what has brought you here, what has made you run this time.
The soft down of a young mustache is not substantial enough to conceal a smile. It flaunts resoluted strength When the sweat of your brow Cascades down upon the white.
I know you need this escape today. The memories were finding their way back inside your innocent façade Your hammer pounds out determined frustration to make the wall thicker To insulate you from the outside As soundless as possible
Stepping softly on your unstable ground, I cross the invisible perimeter you have set. You look at me with a raw attempt at being nonchalant. I notice the wisdom in your eyes is beginning to launch its growth Though your naivety doesn’t yet know it.
I grasp your arm to steady your stance and slowly take away your method of escape. As the hammer drops to the ground, your heart echoes the dull thud it makes causing you to reach out to me for balance.
My arms cannot tell you why your mother died. My thoughts cannot tell you where your father is. My tears cannot give you the needed identity you search for but always find elusive.
I hold you until you are done holding me. Then I look you straight in the face. You read my eyes then slowly nod your head, realizing it is time to go home. The one they decided you should live in. The one you will run away from again when your quest overwhelms your heart.
I offer you myself as a doormat to stand upon until you are old enough to find a path of your own. There will always be an abundance of wood scrap and nails and bandages of spirit For you to build your temporary castle.
Copyright © April 2001 Laura Jeanne Dean
Sandy I'm so sorry to hear you are in pain. I know when a person has any amount of pain, it's hard to concentrate but here you are answering everyone's questions. You are a God send sweetie. Luvstosew and I have meailed each other and I truly enjoyed her. Marth I'm glad you found your way here. I've talked to you several times in Dumpster but have been busy lately getting 2 rooms cleaned out and ready for carpet. Sylvia you sound much younger than your age and I've put you in my prayers. Hugs to u all. Caz
Wow 78harley. Again I am moved speechless. Thanks for sharing your beautiful, thought provoking gift with the Porch. Thinking, pondering.....wondering.....
simply amazed..
Caz,
Hello my dearest. I have been wondering where you have been keeping yourself. Busy as a busy bee or so I see. Don't wear yourself out. Take care of yourself. Remember you are loved.
faith and hope,
Sandy
a lizard ran out of the house with great pride and hopped to the top of a fence post outside
he stayed on the post all day and all night flicking his tounge left and right
when the sun shined hot on the top of the post I thought he would surely soon become toast.
then buzzing along in the air of course zinging their song came two flies from a horse
flicking his tongue at the first fly just once breakfast was his and the second was lunch.
jAMES vIDAMOUR, 2000
Neurontin has medical studies showing it effective for off-label illnesses such as Reflex Sympathetic Dystrophy (RSD), peripheral neuropathy, the pain and spasticity of Multiple Sclerosis (MS), trigeminal neuralgia, migraines, neuropathic pain, postherpetic neuralgia, post-operative pain, myofascial pain (MPS), radiation myelopathy, Restless Leg Syndrome, Lou Gehrig's Disease (ALS), Periodic Leg Movement (PLM) and it is concluded (in one study) that gabapentin (Neurontin) "represents a novel class of antihyperalgesic agents" (pain medications). It also has been shown to be helpful in mood disorders such as Bipolar Disorder and depression.
Thank you 78harley for sharing what you found on Neurontin. You are a sweetheart. Are the kids driving you nuts today? I slept little bit better last night. I woke up a lot, but was able to drift back off to sleep. Hope to see you in MGH chat!
faith and hope,
Sandy
RULES FOR A PERFECT DAY
JUST FOR TODAY I will try to strengthen my mind by reading something that requires effort, thought, and concentration.
JUST FOR TODAY I will do somebody a good turn and not get found out.
JUST FOR TODAY I will do a task that needs to be done but which I have been putting off. I will do it as an exercise in willpower.
JUST FOR TODAY I will dress becomingly as possible, talk low, act courteously, be liberal with praise, and criticize not one bit nor find fault with anything.
JUST FOR TODAY I will have a quiet half hour all by myself and relax. In this half hour sometime I will thank God so as to get more perspective in my life.
JUST FOR TODAY I will be unafraid. Especially, I will not be afraid to be happy, to enjoy what is beautiful, to love, and to believe that those I love, love me.
AUTHOR UNKNOWN
GREAT SAYINGS ON VIRTUE
I am nothing, but truth is everything. ABRAHAM LINCOLN
We are shaped and fashioned by what we love. GOETHE
Integrity without knowledge is weak and useless, and knowledge without integrity is dangerous and dreadful. SAMUEL JOHNSON
Always do right-this will gratify some and astonish the rest. MARK TWAIN
How sweet it is when the strong are also gentle. LIGGIE FUDIM
Resolved: never to do anything which I should be afraid to do if it were the last hour of my life. JONATHAN EDWARDS
Hi, we are new members. Thank you so very much for being out there. I am 79 years old with parkinsons. My daughter-in-law runs the internet with me, but I am learning to search solo. I am not having such a good time with this parkinsons yet but I look forward to better days. I have asked my doctor about other she treats in this area but she won't say much. What I want to do now is talk to others like myself. I live in Los Angeles and there are a few support groups out here but because my son and daughter-in-law work (they stay with me) and I don't drive its hard to go to a support group. I am alone all day, so there is plenty of time to think.
My question is: My first hard to handle disorder are my toes turned under (hammer toe). When I asked the doctor she said no that's not parkinsons however when asked a second time she changed her mind almost like she went and did some research about the subject and said yes parkinsons can cause your toes to turn under. Have your toes turned under? I have seen a foot doctor who said the hammer toe would have happened even if I didn't have PK. PK makes it worse.
Second question: I take sinemet and I have down times. I take a yellow pill and a pink or tan time release and I still have down times. Are you taking sinemet and did it last 4 hours? Did your so called quick release 25/100 take a long time to ware off? I call down time a time when its to early for my next 4 hour dose (sometimes 45 minutes before time I start shaking). I understand sinemet is the most common medication for trimmers.
Hello 79 year old,
Please excuse me for using your age to address you, but you did not leave a name or nickname as your signature. Some of us use nicknames and some do not. My name is Sandra but was given the nick of Sassy when I began battling PD. Sandy is a short form of Sandra. So how would you prefer to be addressed?
As far as "hammer toes" are concerned; yes, I have hammer toes. As far as knowing their "cause" I have never really asked my neurologist. You can bet I will ask the next time I see him!
The reaction your body has to your "near-dose-time" for your medications is called the "wearing-off" phenomenon.This means that your sinemet's effectiveness is wearing off. You need to discuss this with your neurologist. I, personally, have never gone by a clock for my sinemet dosage. I have always gone by what signals my body gives me as to when I need a dose of sinemet. As far as other medications are concerned, I use a clock. Not everyone is like me though. That is why I always, always, recommend that you discuss things with your neurologist. What I also recommend is that you keep track of these "body" changes that you are noticing. You may want to write them down in a journal. I will include below a doctor's form that I keep saved to my computer. When I notice new things going on with my body I will go to this form and enter into the form and then save it. When it comes time for your doctor appointment you can print it out and take it to your neurologist.
I hope this helps you. Please feel at home here. Did you become a member of PLWP? Look for JOIN PLWP in blue, click on that and it will take you to the PLWP site.
Look below for the form to the doctor.
faith and hope,
Sandy
**********************************************************************
My Concerns and Questions to My Neurologist:
Date of Appointment:
Current Medications:
Any New Symptoms?
was there any unusual stress?
Have I had any falls?
What led up to the fall?
Did I incur an injury?
How have I been sleeping?
How are my emotions?
Has there been any change in my sexual activity?
Any new pain?
LIST OF ALL CONCERNS:
DR. , ARE THERE ANY NEW DRUGS?
IS THERE ANY NEW RESEACH OR TRIALS GOING ON?
DR. ,
PLEASE PUT NEW ORDERS HERE:
My Next Appointment is :
IS EVERYONE REMEMBERING TO LISTEN IN, CALL IN, TO THE PARKYTHON ON CHY CASAVANT'S TRAVELS WITH PARKINSON'S?
LIVE! Travels With Parkinson's with Len Casavant from Hudson, Michigan! Two days left - Sat/Sun, May 5-6! www.voiceamerica.com to listen. Call in tollfree at 1-888-335-5204 & talk with us! Peg, Toad, Fig, Mojomon, & Hudson folks are here at Len (Chy's) & wife, Elaine's helping! (click on Chy's webpage above for hours EST)
Bella called all the way from Australia today! Janet Paterson, Sandy from NC & Janemartha had to cancel out at the last minute, but today brought in almost $1,000!
65% goes directly to research (Parkinson Alliance) & is matched by the Tuchman Fdn. so that's a start of $1,300 to find a cure! Pharmcia BI is sponsoring the event & paid all expenses!
Contact businesses & industry in your community to sponsor you & make a tax deductibl pledge tomorrow at 1-866-552-2823 (toll-free!)
BE SURE to listen at 2:00 PM EST Sat. for a LIVE debut of the new theme song written by Richard Newton (fig's brother) & performed by professional sax player, Herbie Russ! PROCEEDS FROM THIS CD WILL GO TO BENEFIT ALL NEUROLOGICAL DISEASES! This song will be famous, and you will have heard it first at TWP!
MAKE A DIFFERENCE!
Dear "79":
My name is Sylvia and I am 64 years old. One of the oldsters in this group. Glad to have you on the porch with us. I hope you come here often to swing with us and chat. We share a lot here and it's really a comfortable place to be.
I was diagnosed with PD only last January and am in the early stages right now. I believe I will be going into a clinical drug study shortly so I have not yet had PD meds. I can relate to your hammer toes, though, as I have two of them myself. I've had them for years and they have nothing to do with PD. One came after I broke my foot and the other seemed to just naturally follow. Now that's just me. PD is different in each person.
I live in Frederick, Maryland but have been to Los Angeles many times because my Dad and Stepmom lived there. I did like LA and miss having an excuse to travel there now. I have two chlldren who are married and have their own families and I now have five grandchildren. They live nearby so that is nice for me.
You can always come to the porch during the day if you get lonely or at night. Sometimes just writing it down canhelp you to feel better. I know it does me. I hope to see you here soon again and am glad to have you as a new member.
Sylvia
Hi Sandy,
I am Bobby Seale and I was Dx with young onset Pd in 1982. I am 52 now... well till May 9, then I will be 53. I write you concerning joining the PLWP chat room group. I have compleated the req. sheet twice and as of yet I have not been granted an entrance into the room or group. Please help me in this matter... I wish to share with other Parkies and enjoy the fellowship...
Thank you,
BobbyBear48@aol.com
PS I am scheduled for DBS Surgery June28,2001 In Jacksonville, FL. Through the Mayo Clinic
Hello Bobby Bear84,
I am sorry you are having difficulty obtaining entrance into the PLWP Yahoo Chat. I will see what I can do to help you. Is your yahoo ID BobbyBear48? I will send you an invite? Did you even receive a Welcome Package from PLWP? You may also want to think about trying this chatroom too. MGH Chat Room http://neuro-mancer.mgh.harvard.edu/echat42/Parkinsons_Disease/
I will be looking forward to seeing you in Yahoo Chat (hopefully) and MGH Chat. I will also remember you in my prayers for your DBS on the 28th. My birthday is the 26th so I should be able to remember your DBS. I will go ahead and send you another welcome package. I apologize ahead of time for any inconvenience you may have experienced.
Faith and hope, Sandy
OOOOPS BOBBYBEAR48...
My apology...
faith and hope,
Sandy
Hello again Bobby,
Maybe I will get everything that needs to be said this time, that is if my short term memory does not totally escape me! There is another PD function in Canada this weekend and our Membership Leader may be attending it. Also, we have had a minor difficulty to come up with the database. I am not trying to make excuses. I am merely letting you know that you have not been forgotten. My personal e-mail is sassypwp@statesville.net . If you are still having difficulty, e-mail me. Also my Yahoo ID is sandy_norris2000 . Now I believe I remembered everything. I hope everyone rests well tonight. Do not forget the Parkython. The hours to go to VoiceAmerica on the world wide web is Sunday from 9 AM til 1:00 PM and then again from 3 PM til 9 PM. You can call in and make comments at this 1-800 number, 1-888-335-5204. Click here for Voice America http://www.voiceamerica.com
faith and hope,
Sandy
Good morning Bobbybear and Ms. 79, welcome, welcome, welcome! So very glad to have you join us on the porch. My name is Diane but i go by Luvstosew. I have had pd for almost 10 years but not correctly diagnosed until a little over 4 years ago. The quality of my life drastically changed then when I was started on Sinemet, Eldyprel, and Mirapex. I have been on these same meds now for the 4+ years. Before the meds, I could barely move, any and all movement was nearly impossible. I do have some tremors but pd has affected me mostly in area of stiffness and inabililty to move. i couldn't get out of any chair without help and walking was a major ordeal. I have truly been blessed with meds that are helping me live a normal life. Ms. 79, I will share that my doc has had to adjust my meds many times to get just the right amount. i found that when i took my next doeses too close togehter that i would start jerking my hands, arms. I didn't realize that the sinemet doeses were actually overlapping each other and i had too much sinemet. i was taking meds every 3 1/2 to 4 hours but have been experiementing with longer intervals like 5 1/2 to 6 1/2 hours. Sandy is right. you must listen to your body. sometimes it needs meds more often than at other times. my doc says to listen to my body which for me is hard to do sometimes. I also took the time release sinemet and it was too much, too strong for me. everyone is different. what works for me might not work for you. i am so glad you and bobbybear have come to the porch. please come often. i joined PLWP about 4 months ago and this experience has truly changed my life. I had never met anyone else with pd and now i have. the friendships i have found on this website are simple unbelievable. For the first timem, i have met and grown to love others who also have pd, who have walked in my shoes, who really understand. This is awesome!. well i am bending your ears and must stop for now. There is so much to see and read on PLWP. Have fun checking it all out and please come back to the porch often. Bobbybear, our thoughts and prayers are with you with your upcoming surgery. Be sure and check out MGH Forum, there are others who have already had the surgery and can give you encouragement and maybe answer any questions. take care, have a great day! Ms. 79, let us know what name you want to call yourself. enjoyed visiting with you both! Luvstosew
Hello Luvstosew,
I am having a kinda unusual day. I have been on a rollercoaster ride of emotions today. I feel like I can cry one minute and laugh the next. I am watching "The Unsinkable Molly Brown." What a wonderful movie it is. They don't make movies like that anymore.
I had a wonderful conversation with Sylvia. I am looking forward to reading her post about her day spent with her daughter and grandaughter.
Have any of you been listening to the Chy Casavant's Travels With Parkinson's Parkython this weekend. Now you know that I would ask this sooner or later.
I am going to tune in on the world wide web now.
faith and hope,
Sandy
Hi Sandy, Just thought I would deliver all my friends the best day of their life..
"The Best Day Of My Life"
Today, when I awoke, I suddenly realized that this is the best day of my life, ever! There were times when I wondered if I would make it to today; but I did! And because I did I'm going to celebrate!
Today, I'm going to celebrate what an unbelievable life I have had so far: the accomplishments, the many blessings, and, yes, even the hardships because they have served to make me stronger. I will go through this day with my head held high, and a happy heart. I will marvel at God's seemingly simple gifts: the morning dew, the sun, the clouds, the trees, the flowers, the birds. Today, none of these miraculous creations will escape my notice.
Today, I will share my excitement for life with other people. I'll make someone smile. I'll go out of my way to perform an unexpected act of kindness for someone I don't even know.
Today, I'll give a sincere compliment to someone who seems down. I'll tell a child how special he is, and I'll tell someone I love just how deeply I care for her and how much she means to me.
Today is the day I quit worrying about what I don't have and start being grateful for all the wonderful things God has already given me. I'll remember that to worry is just a waste of time because my faith in God and his Divine Plan ensures everything will be just fine.
And tonight, before I go to bed, I'll go outside and raise my eyes to the heavens. I will stand in awe at the beauty of the stars and the moon, and I will praise God for these magnificent treasures.
As the day ends and I lay my head down on my pillow, I will thank the Almighty for the best day of my life. And I will sleep the sleep of a contented child, excited with expectation because I know tomorrow is going to be the best day of my life, ever! --Author Unknown
===== "Sometimes it's important to work for that pot of gold. But other times it's essential to take time off and to make sure that your most important decision in the day simply consists of choosing which color to slide down on the rainbow."
Happy Trails to all of you and may the Bleesings of God be poured all over you! Have a great day, love ya all, Ypittypat
Dear All,
Sandy tends to push the envelope with me sometimes (that's a joke), and now I have to post my day. It has really been a nice day. My daughter, Jenny, and her daughter, Sarah came over and the three of us went to "Stablemates," a horseback riding and attire store. We were going to buy the "necessaries" for Sarah's first appearance in a horse show. You really need to see Sarah to appreciate this, but she is a perfectly proportioned little 8 year old girl, only in miniature. She is VERY TINY. Well, we managed to get her outfitted with her velvet helmet, her riding coat and jodphurs, low boots, gloves and a horse and bit pin for her plaid shirt. She just looked adorable! It was so much fun.
It has been a beautiful day today. My husband was at Camp Jamie, a weekend bereavement camp for children who have lost a loved one. He started the camp here in Maryland several years ago and most of the other bereavment camps that have sprung up on the east coast have been modeled on Dana's Camp Jamie.
Now I am going to fix supper for us. I have some left over white rice and I'm going to make shrimp scampi to go with it. We'll have a salad with that and garlic bread (there is no such thing as too much garlic for me) and that will be a good meal.
So actually what I am writng about is nothing spectacular which is what makes it so lovely and easy to think about it. These kind of days are are rare for PDers, and I cherish every one of them. I only hope that everyone of us had a lovely day like mine was today.
Much love and hugging, Sylvia
Sorry for any embarrassment I was or any problems I caused. Last Post! I love you all and my prayers go with you. I shall miss you all.Maybe we will meet in cyberspace. Hugs and love to all with my prayers. Ypittypat.
Hello Sylvia,
Thank you so much for the post telling us about your wonderful day. It is always a delight knowing when a Parkie has had a marvelous day. Thanks so much for sharing it with us here on the Porch. Sarah sounds cute as a button and your daughter Jenny is a gem I know. You are quite a woman, mother and grandmother! I know what a profound affect that my Mother and Grandmother had on my life. I am sure that today will be remembered in all of your hearts for a very long time to come. Here is wishing the best for Sarah and her first Equestrian Show!!
Yum, Yum, shrimp scampi is one of my favorites!! I can smell it from here. I hope the rest of your day goes as well as the first part. We take our hats off to your dear Dana for his accomplishments.
As far as pushing the envelope...you do quite a bit of pushing( with love) yourself. Wink and grin. Until next time Sylvia, we are all remembering you and your trip to Baltimore.
Love ya babe, Sandy
Dear Ypittypat,
I also thank you Pat for sharing "The best day of my life." It is a very strong and inspirational piece. To my knowledge Pat you have never been an embarrassment or a problem here on the Porch or anywhere for that matter. You have always been welcomed and each post that you have made has always been kindly received. I am sorry to hear that you have made the decision not to post here anymore. You will be greatly missed.
faith and hope,
Sandy
PLWP family,
I am not too sure if I have explained the reasoning behind my approach to answering questions or comments here on the Porch. My approach is to use my life's experiences of living with PD, now in my 21st year, as a helpful guide in hopes of offering you all a hand to hold, a shoulder to lean on, and an ear to listen while you are experiencing living life with PD. The reasoning behind this is because of medical liability. I can only share with you what I have experienced. This is not medical advice and in no way are you being told how you should decide to cope with living your lives with PD. I have always hoped and still hope that we are all on equal ground and everyone is always welcome here. The Porch is not about me. It is all about lending a hand, a shoulder, or an ear to help ONE ANOTHER while we actively choose to live our lives with PD. I do not consider myself an expert. Honestly, each and everyone of you that have come to the Porch and shared your posts with us have taught me something valuable each and everyday. The most important lessons have been of HOPE and LOVE. Through love, we can all have hope that we do not face living our lives alone with PD.
faith and hope,
Sandy
here's a mothers day poem.. Harley
A Mothers Pride It becomes dark quicker on the poor side As the sun refuses to linger there The shadows make their nightly appearance Into the little room on the second floor Of the large low income apartments
In the corner of the room A young mother holds her new child Looking at the sweet innocence Radiating from the sleeping face She is proud
Slowly she begins to sing A melody brought back from memories Of when her innocence was still fresh And her dreams were still peaceful She strokes the child’s hair
“Today is my birthday” she smiles as she makes the announcement Then she falls silent again. To contemplate her life of the past To ponder her life of the present
Slowly, she rises from the chair And carries the babe to the opposite corner Of the shell of a home an old box sits in an otherwise nearly empty desk A tear comes to her eye
her careful fingers untie a yellow ribbon Faded slightly with age But as soft as the first day it was wrapped around the treasure and then cut and tied into a bow
She lifts the lid off the box To reveal a porcelain doll With long hair in curls And a face painted with pink cheeks And toes boasting pink toenails
“My mother gave me this on my very first birthday” she looks at the picture tied into the bow “that is her.. isn’t she pretty?” she wishes she could remember more of the women who bestowed this gift full of a mothers pride.
“Today I give myself a gift. I give this doll to you, my child” The tiny fingers curl into the soft hair. And the babe lets out its first coo.
The woman sits for a moment as the apartment loses its gloom “Thank you” the mother says to the child. “and thank you” the daughter whispers to the mother in her heart.
Good Morning Harley,
Well you have done it again. Your poetry makes a person stop and reflect. Thank you for sharing with all of us here. Here is to all the Mothers out there ...we will be thinkin gof you and hoping that this next sunday is a Happy Mother's Day for all of you.
faith and hope,
Sandy
Dear Sandy,
Thank you for going that extra mile Another Good attribute of yours. It meant a great deal to me.
I was going through my email and found some Words of Wisdom that when I read them also meant a great deal to me and I had to come and show them to you and hopefully all of us who reads them will get something out of them.
Take into account that great love and great achievements involve great risk.
When you lose, don't lose the lesson.
Follow the three Rs: Respect for self, respect for others, and responsibility for all your actions.
Remember that not getting what you want is sometimes a wonderful stroke of luck.
Learn the rules so you know how to break them properly.
Don't let a little dispute injure a great friendship.
When you realize you've made a mistake, take immediate steps to correct it.
Spend some time alone every day.
Open your arms to change, but don't let go of your values.
Remember that silence is sometimes the best answer.
Live a good, honorable life. Then when you get older and think back, you'll be able to enjoy it a second time.
A loving atmosphere in your home is the foundation for your life.
In disagreements with loved ones, deal only with the current situation. Don't bring up the past.
Share your knowledge. It's a way to achieve immortality.
Be gentle with the earth.
Once a year, go someplace you've never been before.
Remember that the best relationship is one in which your love for each other exceeds your need for each other.
Judge your success by what you had to give up in order to get it.
Approach love and cooking with reckless abandon.
I guess that is all I have to say about that, as Gump would say. LOL
Love and Friendship to all along with my prayers I hope to see you soon.Hugs, Ypittypat
To anyone who can answer these questions? Why does my husband shuffle? Cause if he thinks about it he walks with the greatest of ease. Why does his arm not swing? Cause when he thinks about it, it swings with the greatest of ease. Why is his posture stooped? Cause when he thinks about it, he stands up tall.......... But why is it when he freezes, he can not move even if he thinks about it? And why does his hand still shake even when he is praying for it to stop? Why can he control some and not others? kmt
It is so good to see you Ypittypat!! I am gald the harm has been mended and yes I believe I can learn and grow from this. Thanks for leaving the words of wisdom, which are always welcome here.
kmt,
Kia, sweetie all the questions you have asked I believe are the most aggravating things about pd. One minute being able to do something (if it is thought about hard enough) then freezing and being unable to do anything eventhough we try extra hard to do things. It is all about our neurons misfiring. Kia, have you called the APDA 1-800-223-2732? You can call and request they send you a Young Onset Handbook. They will send it to you free of charge. The shuffling steps are called festination. The disturbance in walking in PD is characterized by short steps and results from a combination of rigidity, bradykinesia(Slownes and loss of movement, delays in starting to move, frequent stoppages of movement, fatigue, inability to perform two movements at once, e.g. swinging the arms while walking.) and postural instability. Postural instability may be experienced when a patient attempts to turn or enter a doorway.
If I have missed anything kia...let me know sweetie!! We are here!!
faith and hope,
Sandy
Sandy, Thank you for answering my questions, it was of great help!! The shuffling steps (festination) short steps, rigidity, bradykinesia ( with all its discriptions ) Postural instability , especially when trying to turn around! And if I understand right it is because the neurons are misfiring. Well I am just going to have to light a match and start those neurons of his on fire so that they stop misfiring...lol...hehehe...I know it is not really funny but like a good friend here at the porch said once, a long time ago, sometimes it helps to be light about it, joke sometimes, I think she was right, can't worry and be sad all the time. Thanks for being here Sandy and everyone at plwp! Kia
Hi all! Well can someone please tell me why my everloving legs get so stiff that they don't move?:) No matter.... reading some books about Europe and Nat'l Parks in the States. Slowing gertting ready for our child's graduation party. Started another new home health aide named Tanya. Hope she comes on time and doesn't sleep during the day. Excercise is going good. The ankle pain is coming back and I don't understand why. Have to put on my braces again for a bit. Happy cause I know the pain will go away with the braces. Last week my spouse and I went to a reception at the univ.There was violins and cellos playing lovely music. Great snacking food too and nice people. Perfect time of 4;30 PM to 6:30 PM - snack time daily for me. Coinsided with the meds perfectly! have to cut it short here. have to go to bed soon. getting excited about life and it is good. nancy aka nancy m.
Hi again Kia...I am glad the answers were helpful. Yes it is okay to light the fire on hubby's neurons...yes it is okay to joke about it. Laughter releases healing endorphins throughout the body. I love your positive attitude girlfriend. It has been a treat to see you twice in one day. You are always looking good.
Nancy,
It was great to see your post catching us up on all of your news. Violins and cellos huh? Sounds lovely. I love the violin. Soothing.....So Tonya is the newest home health aide. I will be thinking positive thoughts for you sweetheart. I am still walking everyday at least a mile. I went to the driving range today and hit a bucket full of golf balls. I am a bit rusty...now a bit tired. It is a good tired though. It was beautiful weather here today, temps only in the 60's. Cool....well gonna go check out mgh chat and then call it an early night tonight. Sleep well my friends. NAncy I hope you don't have to wear your braces too long. It is good to hear you so positive about living life my friend. Love you all...
faith and hope,
Sandy
Good morning,
I have been up since 6:00 am. I had a half-way decent night's sleep. Honestly, I would like to go and crawl back into bed and get a couple more winks. I cannot do that though. I have a 9:00 am appointment today. I will catch you later. I hope everyone has a good day.....
faith and hope,
Sandy
All my porch friends,please send up a little prayer for your friend, me, Luvstosew. I have already explained to Sandy but let me briefly share with you. Tomorrow, Wednesday morning, around 10:30 a.m. Texas time, I will be presenting a program on embellishing pre-made garments to a group of approximately 60 women at a quilt guild in a nearby town. I am feeling nervouse and scared. haven't ever done anything like this. I was told to imagine all the women in girdles lol and that should ease my mind. I am excited but fearful my pd will get in way, that i will mumble or not speak loud enough or shake too much, etc. Please remember me tomorrow. Thanks Sandy and Jim for already encouraging me and for your kind words last night. i just want to enjoy doing the program and want the ladies to have a fun time also. your thoughts and prayers are much appreciated! Luvstosew
You can count on us to remember you today Luvstosew!! I will be looking forward to reading all the good things you will to post to us about your day of success!!
Where is everyone hanging out? The weather has been so beautiful here...it is hard to stay inside. We have another cool and beautiful sunshiny day. I believe I will dig in the dirt today, maybe plant a flower or two.
Hello anybody out there?
faith and hope,
Sandy
Luvstosew. You'll do great. These ladys will be so impressed with your sewing magic they won't even notice PD. Best of Luck Caz
Sandy sorry I haven't been around. As you know I had new carpet laid in two rooms and one of them is where computer desk and hubby's business desk are. soooooo lots of reorganizing to do. So many boxes sitting around it looks as if we are moving. ll I'm also having problems with strength in my legs. I can't stand on them very long so off to see neuro tomorrow.
Hope everyone has a wonderful day caz
Good morning Caz,
It is always so good to see you Caz. Yes, I remember that you had new carpeting put in two rooms. How does it look? I put in for new carpeting with apartment manager today. I don't know when I will get it but she made the call to the Home office while I was standing there in her office.
I am sorry to hear about the weakness in your legs. Please remember to come back and tell us what your neurologist had to say tomorrow. I will be keeping you in my thoughts and prayers. Please know we love you Caz. Take care. It is not too long until July. I am hoping to see you at Joan's.
By the way, I am enjoying the pics that you are placing on the PWP Dumpster Gang Chat Site in Yahoo. Keep up the good work Caz, it is appreciated by all.
faith and hope,
Sandy
Hi, everybody:
Luvtosew, I will be thnking of you all day today and can't wait to hear how well your presentation went. I know you will be a smash hit. How could you not be, with all the beauty you are able to put into this world with your stitches.
Tomorrow is my big day for my heart catheteization and Electrophysiology heart study. I could use a few prayers also. I'm not really concerned about the outcome of the tests. I will either be OK or not quite OK and with modern medicine/science, if I'm not OK, there is probably something that can fix me. It's the procedures that scare the S--T out of me.
My husband and daughter are going with me and we will drive to Baltimore tonight and stay overnight at a hotel near the hospital. The next morning we will shuttle over to the hospital, courtesy of the hotel, where I will have my tests. I may not be able to come home until Friday. If I have to stay overnight, Dana and Jenny will go on home and then Dana will come back on Friday and get me (I hope!).
I'll talk to ya'll later. Have to pack and do other last minute things.
Sylvia
Hello Sylv,
I see that you are beginning to prepare for tomorrow. I wish I could be there; but I see you will be with great company, your daughter and husband. I will keep you in my thoughts and prayers with lots of love sent your way. We all will be waiting to hear the results. Stay strong sweetie...
faith and hope,
Sandy
Hi Sandy and parky porch friends,
I just got back from Sorrento, B.C. where I was visiting with family. My nephew's wife drove me up there (its a five hour drive) and my brother brought me back home on Monday. I had a nice visit with all the family, but was very stiff and tired by the time I got back home. It's taken two days to recover!
Luvstosew - what an inspiration! I hope your quilting talk went well.
I had some exciting mail when I got home - one of my submissions is going to be printed in the next issue of the U.K. Parkinson's Magazine.
God bless everyone, - Pauline Port Coquitlam, B.C. Canada.
Wow what great news Pauline!! You are such an inspiration yourself!! Maybe you should consider e-mailing that same submission to pwnkle the creator of the Virtuality Magazine for PLWP and maybe she could feature your submission in an upcoming issue. Just a thought....
I am glad you had a great trip and arrived home safely with a surprise in the mail.
Thanks for sharing with us here on the Porch, Sandy
hello sandy, im doing this report for health on parkinsons and i was wondering if i could interview you? i have to do the report tomarrow so if you could get back to me as soon as possible thanks.
Hello everyone! Thanks, thanks, thanks, for your prayers and words of encouragement This morning's program turned out fine. I had fun doing it and the ladies listening were attentive and appeared to enjoy the presentation. i took a dear friend with me who is teaching me to quilt. she suggested i mention the pd, that it might put everyone at ease , so i did when the moment was right. And allwent well. i had a microphone to use which was super. just got home from dallas area, having early mother's day with dtra., and it is midnight, got to get some rest. thank you all again for yur love nd support. you mean the world to me. p.s. sylvia, i will be praying for you tomorrow nd will be with you in spirit. Luvstosew
Hello all,
Sylvia, I will be thinking of you today and praying all goes well!!
Luvstosew, I am so glad your prensentation went well, good job!!
I hope everyone has a great Mothers Day!!
I am home today with one of my daughters, she came down with the chicken pox, and one of my daycare kids also has them :( my other daughter and I have never had them and they say the older you are the worse they get. I guess we are in for a long couple of weeks!! Wish us luck!!
Have a great day everyone!
Take care, be happy, stay healthy.
kmt
It is hard for me to consent to an interview when I do not know who you are, or how it will be done. If you could give me a few more details..I would be glad to help in whatever way I can.
It is great to hear you were a success Luvstosew. We did not have one doubt otherwise. Sylvia wanted me to send you her love. I spoke with her last night on the phone. We were both wondering how you had done at the quilter's guild. We are tickled for you honey.
Kia, wow chicken pox. YUCK! We will be remembering you and your girls and your daycare in our thoughts and prayers. Take care of yourself sweetie! Be good to you and see the blossoms blooming!!
Sylvia girl...we are here waiting for good news. We are praying and sending positive thoughts. We love you bunches dear heart!!
faith and hope,
Sandy
Hello PLWP family,
It is now 9:45 pm and I just got off the phone with our dear sweet and sassy Sylvia. She was eating rice and shrimp scampi...starved is what she was. Starved and absolutely in perfect health. Her heart catheterization showed no blockages. I can tell you I am a very thankful and happy camper. God blessed us all with another answered prayer. Sylvia's second test also turned out just fine. She is going to take something to help her sleep tonight since she did not sleep any last night. I expect her to hopefully sleep in tomorrow. We love you Sylvia and we are so relieved!!
I hope everyone else is doing well....not much traffic on the Porch. What is up? Maybe it is this gorgeous spring weather..kia hope you are managing okay ..we all are remembering you honey. Have you got pink all over you?
Sleep well my friends...see you tomorrow.
Faith and hope,
Sandy
Caz? Tell us about your neuro appointment, please. No we have not forgot about your appointment. We hope all is well......
faith and hope,
Sandy
Hi Parky Porch Pals,
Well, I'm home from neuro after seeing him for weakenss and tightness in my calves. He feels it is caused by Mirapex and has cut that in half and started me on 25/100 Sinemet. I've been so proud of the fact that I wasn't on sinemet and also a bit scared of going on it. but like he said PD is treatable so let's treat it with what we have. I've been diagnosed 4 years and am doing pretty good. So all you newbies, hang in there and we'll fight this disease with the seasoned pders also.
Luvstosew, I had faith that you'd do great.
Sylvia, you are in my prayers.
Kia try to stay sane taking care of that chicken pox.
Love to u all Caz
Caz, just a word of encouragement....i couldn't make it without sinemet. i have been on it for the past 4 1/2 years and it has made the difference of night nd day in my ability to function. By the time my pd was finally diagnosed, I was having much trouble moving, walking, getting out of chairs, etc. Immediately after starting on the sinemet my movement improved so drastically it was almost unbelievable. i moved 90 to nothing, hubby even said man i want whatever you're taking. I am pleased wih sinemet. My neuro has had to work with me on the dosage and frequency. You mentioned your calves, my legs, ankles are swollen and tight too. i am going to see neuro on may 30. i think it is the mirapex but i don't want to cut back so don't know what my doc will say. i have been on it for almost 4 years and only in past year or so have really noticed the swelling. thanks for sharing your info. take care. Luvstosew
Hello Sandy : double posting a few new poems if you dont mind : "ON MY KNEES" I'm on my knees praying to his son ! seeking forgiveness for sins i have done !
I am not healthy in body right now but my sole is intact..dont know how
Your light has come into my life I share with all..especially my wife
I am a bit scared as these words come to me a gift from God the Almighty
so much is happening in my life my daughter is soon to bring a new life
Your praises i sing each morning I thank you dear Lord for everything
fig
Hello...I have been on the quiet side today. Unfortunately, I have been battling a migraine all day. I woke up with it. I had severe migraines when my pd symptoms reared their ugly heads at the age of 19. Gradually over the last 21 yrs they have grown less an less frequent. I may go months to a year without one. Then out of the blue one will hit me. I have tried to post earlier today...but just could not string my letters together correctly. It is a struggle for me now..soI am going to keep this short. I hope all is well with all of you. Thanks to those that come to the Porch daily and read and post. All of you are so faithful and I thank you from my heart. To all you mothers out there...Have a wonderful Mother's Day weekend!
faith and hope,
Sandy
Hi Sandy and parky porch friends,
I'm sorry to hear you have a migraine Sandy, my niece gets them quite often. She's been drinking a special health sunrise tea lately and it has helped her greatly. I'm still stiff and sore from my car travels last week. Usually I do quite well on my 4 sinemet 100/25 per day, but lately it doesn't seem to be working so well. I guess the old bod is getting used to it. I see the neuro on June 18th so will tell all then.
How do I get in touch with pwnkle to submit for the magazine?
Happy Mother's Day to all Mums, ang God Bless everyone. Pauline.
http://neuro-mancer.mgh.harvard.edu/ubb/Forum207/HTML/000475.html
Pauline, click the above. I believe you will be able to get in touch with Carol McLeod through the Virtuality Magazine site. If not please let me know.
Pauline you may want to consider calling neurologist ahead of time to see if there is anything he/she can do while you wait until June 18th. Also, a suggestion, you may inquire whether your neurologist has a website. This is another method of getting in touch with your doctor. Both of my neuros have websites.
For the stiffness and soreness you could try hot baths. Please be sure you can get in and out of tub safely. Jaquzzi would be best...again be sure you can ambulate safely or you have someone with you.
faith and hope,
Sandy
Good early morning,
It is just after 5:00 on Saturday morning. I slept for a bit...not good sleep. It has been one of those nights that I could not get my thoughts to settle peacefully. This usually happens with a migraine. Thoughts seem to have a mind of their own and they choose to race in circles chasing one another, thus adding to the pain.
I have been fortunate though, very fortunate. Other than one "off" period which came right after I had a light supper the PD has been manageable. Thanks be to God.
Before I go back to bed, I would like to ask you mothers out there, for each child you gave birth to, what is the first happy memory that comes to your mind? And how do you plan on spending Mother's Day? I hope it is spent with lots of love and joy!
Today, it is my wish that your pd is manageable, or if you are a caregiver that your love has a pain free day and can enjoy life with you and be thankful. I admire all the courage that I find here daily on the Porch. Love to you all!
faith and hope,
Sandy
Hello Sandy, Don't know what happened, but during the night my hips got stff and hurt me like crazy had trouble turning over again. All I can figure is the electrc blanket is gone and it was coller and damp from all the rain yesterday. However, getting up and moving around the Pain is gone for now. Just needed a little movement to break them loose. I look outside and the sun is shining and I have a wonderful smile from a prayer I received and I would like to share it with you and the rest who visit your Porch. I hope everyone who reads it is blessed.
AWESOME PRAYER > > > May today there be peace within you. > > > May today you trust God that you are exactly > > > where you are meant to be. > > > "I believe that friends are quiet angels who lift > > > us to our feet when our wings have trouble > > > remembering how to fly."
May God bless you all and May you have a good Weekend. An Angel for the Angel Team. Even Angels need help sometimes. Love and Hugs to All, Ypittypat
Hi Again Sandy, I always open my mouth before I read this column when I have something special I want to post or share. My happiest moment I remember with the birth of each child was the moment I saw their faces. I could not believe that this kind of miracle coud come from me, but it did and they have continued to bring me that happiness each time I see their faces. For me it doesn't go away and has continued with their children. I am a proud mother and grandmother. For me there is no greater joy in the world than children.
I wrote a poem regarding my mother. I redecorated yesterday and this is on the front gate with a beautiful Pink Rose. This is just one of my hapiest moments with her and I would also like to share this with everyone and wish all with the happiest of Mother's day.
Happy Mothers Day! My Mother's just a memory for she's in a place so grand. But I can still remember holding onto her hand. Skipping right along so I wouldn't fall behind. Asking silly questions, but then Mother didn't mind.
Off to school I went she left me in there to stay. I didn't know a single soul, but it didn't keep me from play. My teacher she was very nice Mrs. Delmonico. I got to show I could write my name before I had to go.
Mother was always proud of me for what I did in school. She told me everything I learned would someday be a tool. I didn't understand that then, but now I surely do. The lessons that they taught me helps me to deal with others like you.
If your Mother is still alive, listen to what she says. Enjoy her every moment and gain from her ways. Learn as much as you can and feel very blessed. For there are many of us who wait for Christ to make us his guest.
Then we will be together forever this next time around. What a glorious wonderful time it will be when he takes form this ground. The friendship of Mother you can never replace. That unconditonal love they give like you see in Jesus face. Written by: PJS Perriman
I do hope you all enjoy this and HAPPY MOTHER'S DAY Hugs, Ypittypat
Saturday, May 12, 2001 12:30PM
Dear Parky Porch Pals:
I wrote a long message for the Porch yesterday but when I tried to post it, my ‘puter told me I had performed an illegal operation. Everything disappeared and I just couldn’t do it all over again. So here is the abridged version. I have had the two heart exams I wrote about earlier and joy of joys, everything was NEGATIVE! The catheterization showed no blockages at all, not even a tiny one and in the EP study they tried for three hours to make my heart fibrillate and it refused. What news could be better than that? The hardest part for me was lying flat on my back for up to five hours after the tests after lying flat on my back for the two tests. Arthritis and spinal stenosis make that extremely uncomfortable for me. Now all I have to contend with is the fact that I have holes in both femoral arteries and have a few temporary restrictions that will end on Monday: I can’t drive and can’t do stairs more than once a day. Can’t lift or push heavy stuff or make beds. Jeez! What a life! I have a pair of bruises you can’t believe and am sore but what the hey. I have a healthy heart and the rest of the stuff will pass. And now I know I can continue with Phase II of the clinical drug study that is so important to me. I am one happy camper!
My son called on Wednesday and was really concerned about these tests. I put it to him this way: I am having these tests to find out whether or not I have a heart problem. The answer will be one of two things. Either I am OK or I am not OK. If I am OK, that’s the end of it. If I’m not OK then with all the medicine/science that exists today, I am sure the doctors can find a way to fix me. I’m sure my terrified state of mind was a case of being more afraid of the procedures than the outcome of tests. And I’m sure that had to do with loss of control. And, of course, we PDers don’t know anything about loss of control.Wink and grin. I am still so new at this PD thing I had not put “loss of control” into its psychological spot; I was still thinking of it in terms of it’s physicality. And another lesson has been learned.
Thank you all for your caring and loving. I can't tell you how much it helped.
Love and Hugs, Sylvia
Hello Ypitty Pat and Sylvia,
I am so glad you came by for a visit! Pat you can make as many posts you wish in a day. There have been many a time that I have posted before I read and just between us girls(and guys) sometimes I forget to read. Talk about a "PD MOMENT"! wink and grin.....
Thank you Pat for the prayer and the beautiful Mother's Day poem. Are you published? Hint...hint....I hope you have a wonderful mother's day! It is really nice of you to share with us your works.
Before short term memory loss claims another victim, Figgy, thanks for sharing your poetry with us too! Congratulations, Grandpa and Grandma Fig. I read about your handsome grandson. May he be the first of many. So many blessings huh? Came just in time for Mama's day!
Sylvia, thanks for sharing with us about your tests. Sorry your computer ate the first copy, that within itself is frustrating enough to aggravate a tremor. I am sure your children will consider this Mom's day a very special and blessed one.
I am going to cook for my Mama. You guessed it. She loves her Mama's Meatloaf recipe; so, it will be a meal of meatloaf, sweet peas, baked potatoes, and choice of salad. I will make a banana cream pie and a "No Fool Peach Cobbler". Depends on what kind of day I am having with the dyskinesia whether or not I will make southern homemade buttermilk biscuits.
When I was a little girl, my Dad would help me pick out a corsage for my Mom to wear to church. Somehow Mama would find a way to keep the corsage fresh til the end of May. Today I found a corsage that is mounted in a miniature vase, in a miniature gift bag, with a see-through window. It is called a Bag-o'-bloom. On the back, is a cute poem.
"Oh, how can I say it, dear Lord Let me try. Please give me the words, they're easy as apple pie.
I love you Mom, not just on special days. In good times, bad times, I love you...ALWAYS."
The simple things has always made my Mom smile. I hope she likes it.
Well, it is 3:07 pm and you know what that means...STANLEY CUP PLAYOFFS!!! I am so thankful that I have control of a television remote control!! No one can tell me to turn it!! Michael J. Fox's choice to win, the Colorado Avalanche is playing the Blues of St. Louis. JW/JimWrite of MGH chatroom likes the Avs also. Here is hoping the Avs win today....
See you after the game. I am gonna go and fix myself a huge salad, nice cold diet pepsi. Thank goodness the migraine is gone and my appetite is back! Love you guys.....
faith and hope,
Sandy
A LITTLE MORE THAN 3 MINUTES INTO THE HOCKEY GAME AV"S SCORE FIRST!! YES!
cya,
Sandy
Well the Avs won the game...they have a few to go yet.
My meatloafs are "stirred-together", that is southern for mixed well. My banana cream pie is made (fat-free, sugar-free). Tomorrow I will just need to bake the potatoes (microwave), Mom said she had brown n' serve rolls....I got half the cooking done, kitchen is cleaned up, one hockey game down, one playing, trash has been taken out and I am in my satin pj's.
Kicking back and having a good evening. Rest well Moms and have a blessed day tomorrow. I will look forward to all of your posts. Love and hugs!
faith and hope,
Sandy
Hi Sandy,
Someone recommended that i talk to you about your experience with PD and pain. I do well with typical PD symptoms- but i have alot of problem with pain - that i now think is due to PD - one way or another. Not always directly, but partly responsible. I feel that the doctors aare slowly starting to understand the other symptoms that PD is responsible for -as PD effecting the whole body. That is PD specialist- understand, but primary care doctors, still think of PD as tremors, ect........ so when you go to them with an issue of pain, and there is no reason can be found for it- then they make you feel crazy or they blame it on somatization or depression. I have stomack pains- also at night i have pain around my back after I go to the bathroom, i also have leg pain- not cramps -but pain down my leg- I have tried -many types of pain killers or different meds. but it seems the side effects tend to be as bad as the original pain- i ended up with good old tylenoyl - and the PM version for night time pain. i would be interested in hearing your experience with pain.
I am 39 -dx PD at 30 -mother of 2
Hello Mom of 2,
What an inspiration you are. A very young woman at that!! Yes, I can share with you my history with pain. First, I would like to say that it takes a lot of courage to live with PD, especially with being the mother of 2 children. I believe pain and PD eventually becomes an issue with all of us. I know at the young age of 19 I did not experience "all-over" pain with PD like I do now. Having had six knee operations, arthritis and fibromyalgia, and side effects of the PD medications (dyskinesias), and rigidity from the PD, I now experience "all-over" pain. About 10 days before my "monthly" cycle the pain is always worse. The reason mine is worse at that time is because of fluid retention and the sinemet does not seem to work during this time, thus, making the rigidity worse. Due to the lack of response to the sinemet, I have to increase my ingestion of sinemet, which can cause the dyskinesias. Dyskinesias can cause terrible muscle pain and bone pain.
As far as "doctor awareness" is concerned, the next time you see your doctor you may think about taking some ammunition with you. Are you familiar with the P-I-E-N? This is the Parkinson's Information Exchange Network. It is a mailing listserve that is for people that live with PD and their families and friends. You can subscribe to this. I will leave the links at the end of my post that you can click on and be able to check them out. I will include the archive to this PIEN. When you become a member you will be able to go to the archive and enter the word PAIN in the search box. Then you can research and read about PD and PAIN. Anything that you find that remotely resembles the description of your experiences with pain you can print this out and take it to your doctor. I know this may sound like some extra work..but hey..."a girls gotta do what a girls gotta do!"
What I do to cope with the pain is a combination of things. Being a mother, you will need to pick "safe times" to do these things. I usually wait until about 45 minutes before bed (you need to make time for this) I will take a hot, soothing bath. Make sure you can do this safely. I have grab bars on the outside and inside walls of my porcelain tub. If you do not have these you can purchase them at a hospital supply store or a private pharmacy. During the day you may consider using a microwavable heating pad. After heating it you can move this all over your body where it hurts the most. If the pain is really severe I use 350 MG of Soma. Before that, I will try Tylenol Extra Strength PM. You can wear satin pajamas to help you turn in bed. The least amount of struggling you can prevent your body from doing at night the more beneficial it will be to you. If we struggle at night to turn our bodies in bed this will usually wake us, thus, interrupting our rest.
I have to be truthful. My neuro is still working with me in finding the right combination of therapy. There are days that are not so painful. My neurologist and other doctors know when I come armed with a stack of papers, "something is up". Please do not give up. You can come here and rant and rave and cry. We will understand. I can hold out a hand for you to hold. If you need more than this, my e-mail addy is sassypwp@statesville.net . Please feel free to e-mail me.
> http://parkinsons-information-exchange-network-online.com >
http://parkinsn.coles.org.uk/ this is the archive.
I hope this helps you sweetheart.
faith and hope,
Sandy
Mom of 2,
During my hot tub bath I had a few more thoughts come to mind.
Exercise is important. Not too strenuous. Your neurologist can prescribe you Physical Therapy. A therapist can teach you things to help you save extra energy by being bodywise. Plus through exercise your body will naturally release a chemical called endorphins which help reduce pain. In the summertime my neuro orders hydro-therapy. I took lifeguard at the age of 15 and my parents have an inground swimming pool. I cannot swim like I used to. Water therapy is the best exercise with the least amount of risk for injury. Please exercise in the shallow end.
In the winter I go to the hospital and use their treadmill and walk a mile 3 times a week. I also do this in the summer. I do this at the cardiac rehabilitation center, also prescribed by my neuro.
The Soma 350 MG that I told you about in my previous post is a muscle relaxer. Taking the Soma and using the microwavable heating pack in combination works pretty good. If the pain is too bad I will stay with my parents for a couple of days. I live alone. I stay with my parents for my safety and my parent's peace of mind.
If I think of anything else I will be sure to add it on. Take care. Enjoy your mother's day.
faith and hope,
Sandy
Dear Mom of 2:
I also have pain down my legs but not from the PD. Mine is from spinal stenosis/arthritis. It might be worthwhile telling your primary care physician about this. He can order an MRI to check it out and then you can have either confirmation or denial of stenosis and/or arthritis.
I can definitely relate to that pain and I know it keeps me from walking any great distances or exercising.
I'm so glad you came to the Porch. Please come back soon and often. We can listen real well here and offer support.
Best of luck to you in finding out the cause of your pain.
Sylvia
Drugs sre doing their thnk
Igoodnight...sleep well, Hugs and moreh hugs,
Thank-you Sandy,
I appreciate the information. I have brought in information to my primary doctor, but he got mad at me. At the time they were convinced that it was somatization disorder, even though my psychologist said it was not. Luckily, I am changing doctors now. I have also learned instead of bring them info- I ask them to call my neurologist, to possibly see if PD is the cause of this problem. (My husband is in the military and we are stationed in Naples, Italy going to Izmir, TUrkey, so my choice of doctors are limited) By doing it this way, I am not as much challengeing their inteligence. Hopefully, my next doctor will not mindd me bringing in infomation. I will keep searching for answers, for if i understand what is going on, I handle the situation much better. I understand that sometimesnothing can be done, but knowing the reason behind some problems, makes its easier for me.
i, too have problems with my PD before and during my period. For years I have been telling the doctors that the fluctuation of my hormones effect me and my PD. They had me try the birth control pill- to stop the fluctuation, but it made me feel more depressed. Because I do have to be careful for the depression monster- especially during PMS- I notice that i am very sensative to meds that can cause mood swings- like anti-depressants- made me feel like i was a zombie, even Tyelnol 3 -makes me feel a little down. Knowing this - makes me aware not to take these type of drugs- paain is easier to live with then not having control of your mind. Of course that leavves the doctors feww option on how to treet me.
Thank-you for the info on the arcrives and the exercise. I have been really thinking that i need to take caare of myself more-and that i need to start a loyal exercise program. I will- i have, too.
Thank-you for the support. I will not be able to come here for a while because i am packing out tomorrow on my way to Turkey- when i am settled , i will come back. I am interested in your views about DBS- my doctor wants me to have one possibly next year.
bye kat-su
Hello Sandy, Thank you for the open invitation to post here! First I would like to say that Fig is doing a wonderful job with his poetry and writings. I am so pleased and honored that he has invited me to give him my opinion. I think it is wonderful that God has blessed another to write. I also feel that Toad and his writings has inspired all of us at one time or another. Am I published. 2x in my life I have been published, no money just published. I don't know a thing past writing down words. Here is a litle inspiring thing not to long for all the Parkies and their families and this inspiration comes from a Belgium lady and her Haiku's.
Beautiful Lut,
A Wish from the Heart
May you have a glorious and wonderful day with the birds singing so sweetly the Angels join in touching the deepest part of your soul. May the flowers and trees blowing in the wind sparkle your mind and the warmth of the sun touch your heart to give you peace and joy today and always. Written by a Parky for all Parkies and those they touch. Pat Perriman
Hello Sandy, Thank you for the open invitation to post here! First I would like to say that Fig is doing a wonderful job with his poetry and writings. I am so pleased and honored that he has invited me to give him my opinion. I think it is wonderful that God has blessed another to write. I also feel that Toad and his writings has inspired all of us at one time or another. Am I published. 2x in my life I have been published, no money just published. I don't know a thing past writing down words. Here is a litle inspiring thing not to long for all the Parkies and their families and this inspiration comes from a Belgium lady and her Haiku's.
Beautiful Lut,
A Wish from the Heart
May you have a glorious and wonderful day with the birds singing so sweetly the Angels join in touching the deepest part of your soul. May the flowers and trees blowing in the wind sparkle your mind and the warmth of the sun touch your heart to give you peace and joy today and always. Written by a Parky for all Parkies and those they touch. Pat Perriman
Hello Sandy, Thank you for the open invitation to post here! First I would like to say that Fig is doing a wonderful job with his poetry and writings. I am so pleased and honored that he has invited me to give him my opinion. I think it is wonderful that God has blessed another to write. I also feel that Toad and his writings has inspired all of us at one time or another. Am I published. 2x in my life I have been published, no money just published. I don't know a thing past writing down words. Here is a litle inspiring thing not to long for all the Parkies and their families and this inspiration comes from a Belgium lady and her Haiku's.
Beautiful Lut,
A Wish from the Heart
May you have a glorious and wonderful day with the birds singing so sweetly the Angels join in touching the deepest part of your soul. May the flowers and trees blowing in the wind sparkle your mind and the warmth of the sun touch your heart to give you peace and joy today and always. Written by a Parky for all Parkies and those they touch. Pat Perriman
Hello Sandy, Thank you for the open invitation to post here! First I would like to say that Fig is doing a wonderful job with his poetry and writings. I am so pleased and honored that he has invited me to give him my opinion. I think it is wonderful that God has blessed another to write. I also feel that Toad and his writings has inspired all of us at one time or another. Am I published. 2x in my life I have been published, no money just published. I don't know a thing past writing down words. Here is a litle inspiring thing not to long for all the Parkies and their families and this inspiration comes from a Belgium lady and her Haiku's.
Beautiful Lut,
A Wish from the Heart
May you have a glorious and wonderful day with the birds singing so sweetly the Angels join in touching the deepest part of your soul. May the flowers and trees blowing in the wind sparkle your mind and the warmth of the sun touch your heart to give you peace and joy today and always. Written by a Parky for all Parkies and those they touch. Pat Perriman
Beautiful words Pat. I hope the day has been a beautiful day for all.
I just got home from my Mom and Dad's. It was a nice and relaxing day. I stayed busy all day. Mom enjoyed the meatloaf and her orchid corsage. I watched golf with Dad before I came home. I even got to see my niece today. I am a bit tired...but it is a good tired, a peaceful tired.
Thank you Lord for another blessed day.
faith and hope,
Sandy
Why is it that when we are revisited by our past it can slow down our forward steps?
I believe the positive way to look at this is the remembrance of the past may slow us down a bit but we are still choosing to move forward. It is only by the grace of God and the help of family and friends.
reflecting,
sandy
Sandy as i sit hear typing early this morning, the tears jusr keep flowing.. seems like i cry at everything these days. my life is so good, shouldn't be crying. yesterday was a nice day. went to church then got mom from the nursing home and mike,sherra and mom and i went to jason's deli for lunch. this is mom's favorite place. mom is really going down hill mentally and physically. she doesn't remember having 3 granddaughters or where she lives. she does remember me and that is ablessing. but reality hit us yesterday seeing her decline. having worked with the elderly for years, you'd think i'd be prepared for this but im not, she seemed to have a good time with us but i could tell on dtr's face the sadness that grandma isn't the same anymore. i know we need to be thankful and enjoy all these special moments for whatever time we have. my mom is one of those rare people who never said an unkind word about anyone, who truly loves unconditionally, who has so much faith in God; the best role model. my dad died almost 5 years ago. Now it is just mom and me, mike and the girls. hope this isn't depressing anyone, i just needed to share. Im usually upbeat most of the time, but we all have valleys too. Luvstosew
Luvtosew, My mother passed away 14 years ago. I stiil miss her. It sounds like your mother is alot like mine was. It's difficult to see them become progressively worse. You are never prepared for it. I wrote this yesterday as a tribute to my mom. After reading your post, I'd thought I'd share.
Hugs,
Patti TO MOM
Mom was always there With a smiling face To put our world in order To put things in there place
Her gentle touch worked wonders To ease our hurts and pain And to soothe our savage soul So only calm remained
Her voice so soft and caring Uttered words of praise Even in her anger Her voice was seldom raised
With words that went unspoken Yet was always heard She knew our deepest secrets And all our thought absurd
She stood strongly along side us And lent a guiding hand Letting us believe That we were in command
Mom’s love was always constant It never wanned or strayed A love that was unselfish Forgiving and unafraid
This is for my mother Although her life has passed Has left a loving memory That will always last.
Luvstosew,
Yes you are right. We do have valleys that we go through. If I were there I would give you a tender hug and sit with you all day. I know how it hurts to see our parents lose their health and to change. My heart goes out to you Diane. Just because you have been around the elderly in your previous job does not mean that you should be prepared for your Mom's weakening health. Your heart is heavy now because you love her so. From what I know of you Diane and from what you have said about your Mom's nature and spirit, the two of you share the same beautiful and loving ways. I am glad that your family was with you yesterday. Is Mike there with you today? Or is he traveling? I believe you said that he does not travel as much anymore. I would feel a little bit better if you had some company. May the Lord comfort you today Diane. I hope you get to feeling better soon. I will be thinking of you with positive thoughts and prayers.
faith and hope,
Sandy
This is for all you who have Mothers yet. Give them a big hug whenever you see them and tell them you love and appreciate all they do and have done for you. I never realized what a good job my mom did til I had children of my own. She was widowed at the age of 33 with 11 children. Can't imagine how she did it. She died in a car accident at the age of 39 when I was 13. I never got to tell her good bye or I love you Mom. My children never met this wonderful lady whom I obviously inherited my strenght from. It's hard seeing parents health decline but please love them while you have them and enjoy the time you can spend with them even if it's just holding their hand. God Bless all of you. Caz
Thanks for sharing your words of wisdom with us Caz. What you shared with us today is something I did not know about you. I could not imagine growing up without my mom at such a young age. Your strength and ongoing perserverence continue to be a common thread in your posts. I appreciate you sharing your Mom with us. Love and hugs...
faith and hope,
Sandy
CAZ, I am right there with you, my father died when I was 8 years old and my mother died when I was 25. My kids also never got to know these two people, only by what my wife and I tell them. I was really too young to fully understand when my dad died and my mom died of lung cancer and I was in denial that she would die until it was too late. So yes, tell your parents how much you love them while you can. Not only your parents but everyone that you care about, because you never know...when.
Hi Sandy,
I hope everyone had a wonderful weekend. I know we had fun in chat yesterday in the Main PLWP and I was surprized for it being Mothers day that it was as good as it was, I just know I luaghed until my ribs got sore.
I guess maybe I am a different type of person than others sometimes I think people may think I am wierd, but that is ok becuase Like Popeye used to say I am what I am and that is what I am spinach or not. On the subject of the past, Present and Future. I rather enjoy being revisited by my passed. I Don't think that it keepse me from moving forward, but the opposite. I can't change the past and a lot of my past wasn't always a good memory. There has been a lot of hurt and pain in my past, but all that has been forgiven and almost forgotten. Inspite of everything though I was loved and I have a lot of good learning experiences in my past. I had people that encouraged me and teach me how to deal with adversities. There were many joys in my life lessons on how not to dwell on the negative, but always look for the positive and it is very possible to turn a negative into a positive. When My parents were alive they were a good reminder of my own inner strength. At that time I could remember very little of my past because I didn't need to remember it. I thought those memories were gone for good. Since my parents have gone on to be with our Lord above these memories now just come flooding back and with them that reminder of my inner strength. Now I need those memories to provide me of the strength of that unconditonal love that they provided so freely just as our heavenly Father does above. Now I take those lessons and good memories to remind myself that Only I have the control over my feelings and only I can take that negative and change it to a positive feeling. Sometimes I have to back away to do that so that ican have that solace to go deep inside myself to find the way to do that, but I usually succeed. It is who and what we are inside not what is outside that makes us the people we are today and therefore reflecting our attitudes, our minds and those we come incontact with. The problem lies with the fact that our bodily reactions are not what they were and it is difficult to for others to see that we are good, happy people most of the time, therefore I feel it is more important to smile everytime we can even at times when we do not feel like it. It just might change the way we feel. Anytime I get serious I look mad, I am not just deep in thougt and I may not even realize that anyone is even looking. My hubby says anytime I am not smiling i look mad so I should smile all the time. Idon't I wish I could,but like everyone else I don't always feel like it. So you see I am talking to myself as well as anyone else who cares to read. The Future well 1st there may not be one. Also I found the things we worry about the most never happens. I will worry about it when it gets here I don't have time to think about it today and frankly I don't care what Rhett Butler cares about. I look forward to dreams and memories of those who are now where I want to be for they encourage me to be who I am and do what I do. I always wake up happy that God has given me a new day to share with others. Well, I must push on myself, but I do want to say one more thing. Ihave had pain and stiffness for thirty years. I am now under control. I thought It was athritis, but the said no. All these years and join the crowd because I think they marked all that up to self invention. when I started being treated for PD It got better. Once you get a pansie diagnoses it follows you the rest of your life. So maybe I am wierd, but I don't hurt vey often anymore. Mine usually hits me during the night and depending on the severity or activity will determine how long it hurts. Hugs and God bless you all, Ypittypat
Hi Sandy,
Thanks very much for the information. The hot baths have helped a little. I have an appointment with my doctor tomorrow, so will let you know what she says. The pain and stiffness has been slowly getting worse over the past few weeks, especially if I've been sitting for a while. It helps to keep moving. Sneezing or yawning hurts chest muscles, so I try not to! What a bummer! I had supper with my daughter and family for mother's day, it was very nice. My son Elliot had to work, but phoned, and promised to see me soon. Thanks for being such a good listener. God Bless. Pauline
Hi ya Pauline,
I am glad to hear the hot baths have been somewhat helpful. I hope you will keep us informed what your doc says. You never know when one doctor will have something new to say that might be beneficial to all of us. I know I am going to be calling my neurologist this week and see if he can check on any GYN specialists that might be knowledgeable with how our hormones affect our PD. I am then going to ask him to refer me. I have a horrible time 10 days of each month. It will be interesting to see where this will get me.
I am glad you had a pleasant day yesterday. Here is to hoping you will see your son soon.
I am glad you are finding it comfortable here to just for a spell. I am trying to get awake so I can catch another hockey game. I took a nap that was refreshing.
I will be remembering you tomorrow in positive thoughts and prayer.
faith and hope,
Sandy
May 15th Tuesday Morning
Hello everyone! I do not know how many will agree with me, but I sense an unusual blue depression has set into the atmosphere of PLWP. If anyone thinks I am nuts and imagining things, I would love to hear it. I have felt as though I have been on a rollercoaster ride. I haven't felt like doing anything. Granted, I am managing to accomplish some things each day; but I have not been experiencing any joy. On top of all of this, I have been experiencing guilt along with the blues, which in turn can make the depression a vicious cycle. The guilt is coupled with the fact that I do not feel like turning on my computer. After I check the Porch and catch up any replies, I will just sit and stare at the computer screen.
I do not want to be the cause of anyone else to be blue. Often times, it is times like these that God will choose to work through His children. Maybe, if I can try to explain what I have been experiencing someone out there will open up and share because they can identify with it. I am admitting I need some help here.
This has been a horrible battle. There are things that I know I need to get started on pertaining to The Angel Team but I have no idea in which direction to even get started. May 16th I am supposed to submit a report on the Team, simply for keeping PLWP apprised of our progress. Today I feel less than adequate to even hold the position of anything at PLWP. I feel I am letting you down. This is not written for pity. I am just at my wits end here. My great grandmother that lived to be 102 had a saying "When you do not know what to do, don't do!" Although this is good wisdom, I feel as though I am just hopelessly twiddling my thumbs.
I have to go to the Library and the drug store and stop by to see my parents. Please do not misunderstand me. I have been thankful for each day and thankful for the things I have been getting done. I feel as though I am dragging around a huge question mark that weighs 500 pounds. It is exhausting.....
still believing in faith and hope,
Sandy
Hello its me again...
The PD symptoms have also exacerbated making the battlefield of my mind more painful and ugly!!
sandy
May 15, 2001 Tuesday Evening
Hello to all!!
Thank you Sylvia, Diane, and Tim for the dear and precious phone calls that you made to reach out your hands to me today. These phone calls made a world of difference. I decided to stay in today. I am glad I did! This is what PLWP is all about, reaching out! Sylvia was the first to call. By the time we were hanging up I was able to chuckle and was left with a smile. There is an overall consensus at PLWP of dealing with the blues. Diane and I had a long chat and she bravely took on the responsibility of getting a letter of direction and ideas out to the Angel Team. Diane, you are a natural Leader!!Thanks from my heart for the help. PLWP will benefit from this. Then there was the call from Tim Foley. I call him my Lil Brother. We both shared our grumbles of pain and difficulties with life with MSA and PD. Excuse me ladies and gentlemen; but, he and I were both in agreement that our illnesses "sucked-out-loud"! MSA AND PD are ugly illnesses; thus our description sufficed.
I love each and everyone of you here at PLWP. I hope your day has been a good one. Take care of yourselves and know you are always thought of.
faith and hope,
Sandy
Dear porch friends, thank you all from the bottom of my heart for your kind words and encouragement, your phone calls and emails. You are true friends who really care. you all have truly touched my life. Thank you! i am feeling fine today, tears still come occasionlly. i have so much for which to be thankful and a wonderful family. I believe that i am experiencing depression directly related to pd. This is number one on my form, that sandy gave me, that i will discuss with my neruologist end of this month. Guess it is time for a possible anti-depressant. Several other parkies have shared with me recently that depression is definitely part of the disease. luv you all, got to get busy being domestic lol, cleaning a little, so i can later sit down and sew and have fun. You are the best!!!!!! Luvstosew
5/16 Dear Sandy,
Sometimes I have so many things that I have to do,I feel overwhelmed. Usually I just ry to take one thing at a time, focus on one chore or whatever. It depends on how I'm doing or feeling. I would love to go see a movie, "The Mummy Returns" (with the Rock as the Scorpian King) but I know I can't sit still that long without dystonia, or freezing creeping up on me. So, I'll rent the tape or wait and see it at the Drive-Inn this summer. I love drive-ins,lol
Sometimes trying to find a place to start or how to start can be hard for me. I don't know if it's a pd thing or what. But, sometimes I just don't do anything, I hang around the house in my bathrobe. I don't get to enjoy being still or doing nothing very often, but I think you have to some times. It helps you find your way back to some semblence of balance, some sense of peace.
At any rate, I may be out on a limb, but I think that the blues seem to be an afermath of our functions, the Bridging the Borders wasn't too long ago. I held onto the glow I felt from the PWLP Rally for as long as I could. I just wanted to bask in the blissful glow of love and kindness we all shared. Then realty sank in, I was back to my own little part of the world, and somehow, I felt all alone, sad. Withdrawls,maybe? I hibernated for a while. Didn't see any bears, other than my dog's teddy bear squeaky chew toy, lol
I know I'm never alone in this again. I have all of you to thank for that. So lean on me if you'd like.
I really wish we could go for a ride Sandy. I know you would love the wind and feeling young, wild and free. We have a good time rolling the throttles back, and making both Harleys roar. The barks and growls bounce and reverberate off the cars, buildings and street, the echos set off the car alarms in town. hehehe
take care dear lady, rest well and in comfort.
love, toadie
May 16, 2001 7:10 pm
Well it is after 7:00 pm so you know that I am watchin' the Stanley Cup Hockey playoffs. I love it...you are probably gettin' sick of hearing me tell you that...anyway.....I have stayed away from the Porch today. Like everyone else these blues keep hangin' on. Diane, I am so glad that you are trying to stay busy. I always love to hear about your sewing projects. I had a long chat with Brenda today. I made sure to tell Bren about how valuable it was to get those three calls yesterday. Diane, I am convinced if it had not have been for us getting together yesterday and talking about the A-Team and your wonderful administrative skills the Team report would not have been submitted today. You made it possible with listening to all the other's ideas to get those letters out to the team. Again thank you.
Toadie, I believe it is withdrawal, the blues, an extreme low after experiencing such an extreme high at the Rally. I am hoping there is going to be a huge turn-out for Joan's shin-dig in July. You guys may call me crazy; but, sometimes to get through these tough times I literally have to get in a quiet, dark place. I transport myself to those personal moments at the Rally. The memory is a wonderful thing when we prompt it hard enough. It brings a smile to my face remembering how Sylvia's smile and wonderful laughter can light up a room. Even to be able to glance across the room and look into a parkies eyes and truly know what the heart is feeling. To remember how Diane's face would light up talking about her sewing (truly a labor of love), to see how much Mike loves her and cherishes her...is simply beautiful. Toadie, remembering you and I looking at each other at the same time in Nan and Bren's cabin and realizing we both had on our frindged jackets and watching our frindge dance...hehe Remembering the laughter and the tears shared....Let me tell you, each day and night when I speak a word in God's ear...I just simply ask Him, Father I truly would love for the PLWP Ranch to be a reality, now, built! Whenever I see or hear a harley, tears will pool into my eyes. You do not have to see a harley to feel it. Every time I hear one I get a wish in my heart hoping that you have been able to ride recently and have been riding the wind with a carefree abandon. It raises goose bumples on my skin. I use imagery a lot for relaxation. It calms my tremor and my dyskinesia. My imagery is all of us joined hand in hand comforting each other with the knowledge of kindred spirits.
All of you get my drift. I love you so very much.
My Daddy and I went to the driving range this evening. He gave me some golfing pointers. I had a blast. He knows the goal i have set for July. I tell you I will be one ecstatic Parkie on the 18th hole of the golf course. I ate supper with Mama and Dad. I did make it to the grocer's today and to the library.
I seem to be rambling....no particular direction...but the important thing is I know where my heart is....with all of you...you are absolutely on the mark Toadie we are never alone in this thing.....Sylvia where are you? Kia, where are you? Pat? Pauline? Nan? Fig? Harley? Can you hear the distant thunder?
faith and hope,
Sandy
Wednesday, May 16, 2001 - 8:20PM
Well, Sandy, here I am. Same place, same station. I've had an interesting day. Had a chat with Martine this morning and later on in the day had two chats with Parra51 otherwise known as Harley (from Sydney, Australia). I can't believe the people I've met thanks to PLWP. It's a contsant source of amazement to me.
I'm still in the throes of inertia for some reason. I think you and Toadie are right; it's withdrawal from the Rally and the Parkython. Altho' when I talked to my sister today, she said her whole office was in the same state we're in...it must be something in the water.
My neck has been hurting on the right side, at the base of my skull. Don't know if its PD-related or not. I didn't know what kind of a doctor to contact, so I called my primary care doc, but he was not available at all today and I don't like the doc who would have seen me today. If it's not better tomorrow, I'll see my primary care doc for sure. Then I tried my neuro's office but all I ever got was answering machines. lso, my whole body has been itching. I don't really feel good. But at least I know it's not my heart. I'm so new at Parkinson's that I don't know what is related to PD and what is not. The pinkie finger and ring finger of my left hand are numb and that makes typing a little slower for me. After reading what I have just written, I have to say that I am truly not hypochondrical.
I'm going to a breakfast (political) at 8:00 tomorrow morning. The way it takes me so long to dress in the morning, I'd better start showering and getting dressed tonight instead of going to bed. Then maybe I'll be ready on time.
Guess that's it for now. More later. Love to all. Sylvia
Good morning Sandy, just wanted you to know im better today. i decided if the tears are going to flow, them i'll just cary a box of tissues around with me and if asked i will say i have an overactive tear duct lol lol. i feel better because i know part of the real source of my depression besides pd and i am ready to face it head on. Bren has a post on MGH Forum where she talks about depression and respecting ourselves and others, etc. powerful post. i went there and vented big time. it is so nice to be able to open up with you and other parkies and share what we are really feeling and not worry about rejection or people thinking bad of us. go to bren's post and you can read my thoughts. i hope i didn't get too off track from what Bren was hoping to accomplish with that post. lots of people have shared and their words have greatly empowered me. i feel much better thanks to you and others here. i was so down last night, lower than ever, but today is a new day....going to get off my "butt" and get moving. no more pitty parties especially since i didn't have any chocolate cake to eat lol lol! have a great day everyone, luv you all, Luvstosew
Cross-posted from The MGH Forum: (with misspellings corrected)
Dear Luvtosew: Knowing firsthand some of the things you are going through, I have a couple of suggestions to offer. My exercise regimen has been severely affected because in addition to the PD I also have spinal stenosis and osteoarthritis. I can't move a lot without pain. However, I have found two exercise tapes that are perfect for me and I always feel better after doing them. One of them is called Senior Flex and it's a stretching regimen workout for seniors. Now I know you're not a senior, but this might be a good way for you to get started. The other tape is Tau Chi for Arthritis which is also very low impact. I got them both through Amazon.com.
This has been an excellent thread. Like you, I felt I was the only one who was so depressed. The exercise helps a lot(gets the endorphins going). Once that happens I find it easier to accomplish what I "have to do" along with what I "want to do." I was at the point where I couldn't even do what I wanted to do. I simply sat and played games on the computer all day. And that's no way to live! Actually, that's not life at all. That's only existing and I've decided I want more than an existence, I WANT A LIFE.
This thread has been so helpful to me and obviously to others also. Thank you Brenda, Charlie, Lil, Shreela, Figgy and everyone else who has posted here (I hope I didn't leave anyone out. If I did, it was unintentional). Thank you for gently pushing me out of my own private pity party and helping me to look further inside myself to try to recapture the vibrant and useful person I felt I once was.
Sylvia
Chasmo told me I was wrong, I didn't have to recapture the old me. All I had to do was open the door. He is right. I do feel so much better today. I wonder, Sandy, if that has anything to do with our marathon phone conversation last night. Somehow I think it might.
I don't know what I'd do without PLWP.
Love and Hugs to all, Sylvia
Hi Sandy Well, after hurting my back Sun and having terrible back spasms finally feel better today. Don't even know how I did it. Am glad to see u went and hit a few golf balls. I took some aluminum cans in last week to add to the golf fee. Surely but slowly it's building up. I can' wait to see everyone in July. Have a great day. Caz
May 17, 2001 1:27 pm
Good afternoon Luvstosew, Sylvia, and Caz,
I am sorry Caz about your back. Your post here today is the first I have heard of it. How in the world did you injure your back? I understand about those back spasms. It is good to hear you are feeling better. Take it slow and easy at first. Diane and Sylvia your posts along with Brenda's has hit right on target. I am glad to hear that your determination, strong spirits and the use of MGH and PLWP and the Porch is making a difference. I could not imagine life without PLWP and all the understanding and love. I am on my hormonal roller-coaster ride and still shadowboxing with the blues. I am experiencing some lifts though, almost as if a fog is beginning to lift. I can tell you this, knowing that there are others experiencing the same thing helps. I know it always helps to talk with all of you on the phone. (especially the marathons) I just worry about your phone bills.
Thanks to all of you for reaching out and the relaying of information. The exercise videos sound great. I am gonna go check and see if the library has them. If not, I am sure they would order them. I love the library.
I am looking forward to tomorrow. My brother Randy has to go out of town, so Whitney (his daughter) is staying the night with my parents. We are gonna have pizza and swim in the pool. I will getting exercise, laughter, and having a chance to spoil my niece. Look out ....is that a rainbow I see? Huh? Who wants to go look for the pot of gold? I am realizing that my gold has already been found, in you all, my dearest of friends. Love you all...hugs....
faith and hope,
Sandy
Hello all you beautiful PLWP,
I have not been here in awhile because my family has had a rough couple of weeks with the chicken pox and the flu :-( but all is ok now. I was just reading up on the posts and read that some of you were feeling down :-( But also how you all come together when one is in need. You are all the best in my eyes, and I wish you nothing but happy, healthy, pain free days!!! You are all TRUE FRIENDS to each other!!!
This poem written by EMILY MATHEWS came to my mind after reading up on the posts.
Friends our like angels who brighten our days, in all kinds of wonderful magical ways. Their thoughtfulness comes, as a gift from above. And we feel we are surrounded by warm and caring love. Like an upside-down rainbow, their smile brings the sun. And they fill ho-hum moments, with laughter and fun. Friends are like angels without wings. Blessing our lives, with the most precious things.
Bless all of you! kmt
Dear sweet kia,
Thanks for the note and the poem. You are counted as friend and family here on the Porch. Your kindness and caring is truly an upside-down rainbow!
faith and hope,
sandy
Dear Sandy, Why is it that just when we think we are finally undercontrol zap.... there goes the rug again right out from underneath us. I don't know what we would do if we didn't have each other to help us through these horrible times. I spoke too soon and should have kept my mouth shut or knocked on wood or something, because once again I am getting those freezing spells at night and I am experiencing more pain. It is particularly horrible at night. I am slow and tired and draggy. The past two days I have been agitated, angry, crying, and laughing, The moods shifting so quickly I can't keep up. There is no reason for me to cry, but I can't control it. I think this is the thing I hate the most about this horrer of horrers. I hate it I hatte It I hate it! The pain makes it worse or do the moods make the Pain worse. In talking to others I have found that I am not alone others have also been going through this. I don't think it has been a very good week for anyone. I wasn't sure I would even wake up this morning, but I did. I wasn't even sure I wanted to wake up, but I did. I had such crazy ideas and strange sensations I could feel the discontentment, the agitation, the anger, the nervousness, anxiety plus, along with the depression, boiling beneath my skin and deep into the very heart of my soul. Then I had a message from a friend someone I feel so comfortable with that I sat down and answering her message through poetry and that seemed to calm me enough I could sleep. This morning I was able to after a struggle getting up go to the mirror and put a smile on my face and say, " Ta Daaaaaa" The birds were singing outside, the sun was shining and apparently I had something to do today because god gave me the gift of another day! I have worked hard all day trying to keep the smile there and the tears away. They are still there, but I fought that old devil no matter how tired and achy my bones were or how stiff or slow I was. I took the day to be kind to myself and even allowed myself the luxury of a nap. For I knoow how hard it was to roll over in the bed. I did some things for me today. I even did some surfing on the net and got away from the mail and Palace for awhile. Picked up an item here and there. I know things are back logged on me, but they have been for awhile anyway. I found some things that were sent to me and I posted them, that reminded me to slow down. One of them is titled slow down therapy. Slapped me right in the face the very first sentence. It said too me wake up, see what you are doing to yourself, be kind to yourself it will help you be kind to others. When I came over here and stared reading these posts I thought my goodnes it is everywhere. Just like an alien from outer space taking over our bodies. Now I must go back to the Palace and bring it here maybe just maybe it will do for someone else what it did for me. I plan to read this everyday untill this awful demon, these terrible feelings, have left for awhile once more. May God be with all of you and comfort you during these times of Pain and emotional abuse this disease plagues us with and once again bring joy to the deepest part of our souls. Amen Brb Hugs, ypittypat
Here it is Sandy,
I so hope others enjoy this and find it as helpful as I do. It is all stuff we already know, but with these emotional rips and tears in our personality during these crazy states of mind, what ever the cause, this canonly help you recooperate.
"Slow Down Therapy"
1. Slow down; God is still in heaven. You are not responsible for doing it all yourself, right now.
2. Remember a happy, peaceful time in your past. Rest there. Each moment has richness that takes a lifetime to savor.
3. Set your own pace. When someone is pushing you, it's OK to tell them they're pushing.
4. Take nothing for granted: watch water flow, the corn grow, the leaves blow, your neighbor mow.
5. Taste your food. God gives it to delight as well as to nourish.
6. Notice the sun and the moon as they rise and set. They are remarkable for their steady pattern of movement, not their speed.
7. Quit planning how you're going to use what you know, learn, or possess. God's gifts just are; be grateful and their purpose will be clear.
8. When you talk with someone, don't think about what you'll say next. Thoughts will spring up naturally if you let them.
9. Talk and play with children. It will bring out the unhurried little person inside you.
10. Create a place in your home...at your work...in your heart...where you can go for quiet and recollection. You deserve it.
11. Allow yourself time to be lazy and unproductive. Rest isn't luxury; it's a necessity.
12. Listen to the wind blow. It carries a message of yesterday and tomorrow-and now. NOW counts.
13. Rest on your laurels. They bring comfort whatever their size, age, or condition.
14. Talk slower. Talk less. Don't talk. Communication isn't measured by words.
15. Give yourself permission to be late sometimes. Life is for living, not scheduling.
16. Listen to the song of a bird; the complete song. Music and nature are gifts, but only if you are willing to receive them.
17. Take time just to think. Action is good and necessary, but it's fruitful only if we muse, ponder, and mull.
18. Make time for play-the things you like to do. Whatever your age, your inner child needs re-creation.
19. Watch and listen to the night sky. It speaks.
20. Listen to the words you speak, especially in prayer.
21. Learn to stand back and let others take their turn as leaders.There will always be new opportunities for you to step out in front again.
22. Divide big jobs into little jobs. If God took six days to create the universe, can you hope to do any better?
23. When you find yourself rushing and anxious, stop. Ask yourself "WHY?" you are rushing and anxious. The reasons may improve your self-understanding.
24. Take time to read the Bible. Thoughtful reading is enriching reading.
25. Direct your life with purposeful choices, not with speed and efficiency. The best musician is one who plays with expression and meaning, not the one who finishes first.
26. Take a day off alone; make a retreat. You can learn from monks and hermits without becoming one.
27. Pet a furry friend. You will give and get the gift of now.
28. Work with your hands. It frees the mind.
29. Take time to wonder. Without wonder, life is merely existence.
30. Sit in the dark. It will teach you to see and hear, taste and smell.
31. Once in a while, turn down the lights, the volume, the throttle, the invitations. Less really can be more.
32. Let go. Nothing is usually the hardest thing to do - but often it is the best.
33. Take a walk-but don't go anywhere. If you walk just to get somewhere, you sacrifice the walking.
34. Count your friends. If you have one, you are lucky. If you have more, you are blessed. Bless them in return.
35. Count your blessings - one at a time and slowly
--author unknown
I truly wish I could paste the picture here I chose for this, but it is truly the message that counts.
Our Thinking versus God's Promises
"It's impossible" All things are possible (Luke 18:27)
"I'm too tired" I will give you rest (Matthew 11:28-30)
"Nobody really loves me" I love you (John 3:16 & John 13:34)
"I can't go on" My grace is sufficient (II Corinthians 12:9 & Psalm 91:15)
"I can't figure things out" I will direct your steps (Proverbs 3:5-6)
"I can't do it" You can do all things (Phillipians 4:13)
"I'm not able" I am able (II Corinthians 9:8)
"It's not worth it" It will be worth it (Romans 8:28)
"I can't forgive myself" I forgive you (I John 1:9 & Romans 8:1)
"I can't manage" I will supply all your needs (Phillipians 4:19)
"I'm afraid" I have not given you a spirit of fear (II Timothy 1:7)
"I'm always worried and frustrated" Cast all your cares on Me (I Peter 5:7)
"I don't have enough faith" I've given everyone a measure of faith (Romans 12:3)
"I'm not smart enough" I give you wisdom (I Corinthians 1:30)
"I feel all alone" I will never leave you or forsake you (Hebrews 13:5)
I needed this today and everyday. Think this is my day for being reminded why I am here. At anyrate after I have had a few bad days I find I must check for damages and repair them quickly. Just as you would any storm on the earth. For any open wound may become infected causing more damage. It is better to heal any wounds quickly and not let it brew beneath the surface. This is for me. If it helps anyone else then it is fine. Thanks, Pat Hugs to all I believe they are a necessity of life at the low points in our lives. Ypittypat
May 18, 2001 4:18 am Friday.
Good early morning Pat,
The blues and heavy fog seems like it is hanging around a bit too long. I appreciate all that you shared with us. It helps to be honest and reveal how ugly this PD can be. I believe unloading here, lessens the burden and lightens the load. Thank you for sending the picture of Jesus holding the small child, while reaching down for another child all the while the storm is raging around them. I agree it is very fitting. Your faith and strength to perservere is inspiring. I am hoping and praying that your day will be filled with no pain, that your thoughts will be peaceful and your inner spirit will be calm today. May God Bless you Pat. Thanks again for reaching out.
I am gonna try and get some more sleep. I am going to be spending the day at my parents pool with my niece. Rest easy my dear friends. I love you all.
faith and hope,
Sandy
DID YOU KNOW? How many of you have visited the website and browsed around. Did you know there is a Parkie Porch where you can get answers to all kinds of questions about living with pd? That's at: http://www.plwp.org/sandys_parkie_porch.htm Did you know several of our friends keep journals of their day to day lives? Thats at http://www.plwp.org/master_bedroom.htm Did you know that PLWP has it's own monthly magazine called Virtuality at: http://w3.one.net/~cmcleod/virtuality Did you know that you can still see the clips from the rally at: http://home.talkcity.com/GaiaWay/pwnkle/a_ky__rally__videos.htm AND DID YOU KNOW YOU can access all of the by going to www.plwp.org and clicking on Entrance. Just thought you'd like to know!!! Love and hope, Brenda
WE HEAR YOU BREN!!
faith and hope,
Sandy
There's a thread on depression at the MGH Forum. So I thought I'd add a few comments, at least a nickle's worth. I can go along for weeks without a crying fit and then along comes something to kick me in the butt. This past week it was the awful back spasms. So I get over that and then I get an email from a friend who has been battleing cancer only to find a 4th lump. A few hours ago hubby called, he drives semi, to tell me late last night he rolled his truck trying to avoid a deer. He is fine, thank God. So why am I sitting here crying? I have so much to be thankful for. My family is wonderful to me. I have great friends. But right now I feeel as if another shoe will drop and this time it will really be a big thud. I know I shouldn't be worrying as that is a useless emotion. So I'm off to call a friend who has so much strength I hope she won't mind my borrowing some. Caz
GREY SKYS WILL CLEAR UP AND I'LL PUT ON A HAPPY FACE
Hi ya Caz,
I understand Caz. It does seem as though there is a huge echo of question marks of what is going to happen next. I am finding myself quiet....and yet, I refuse to relinquish my hope. I am alive. The blessing of knowing all of you is worth having PD. We have too far to give up now. Remember Caz, WE HAVE HIGH HOPES!
YOU ARE MY SUNSHINE MY ONLY SUNSHINE . YOU MAKE ME HAPPY WHEN SKIES ARE GRAY. YOU'LL NEVER KNOW DEARS HOW MUCH I LOVE YOU!! PLEASE DON'T TAKE MY SUNSHINE AWAY!
I am going to go grab a swimsuit and go swimming in my parents pool. I will be spending time with my niece and eating pizza. Chin up my friends...
hugs and support,
Sandy