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Sunday, December 02, 2001 11:05 PM Goodnight to all...remember he knows when you've been sleeping....he knows when you're awake...he knows if you've been bad or good....soooooo.... faith and hope, Sandy Sunday, December 02, 2001 08:43 PM No need for apologies Laura. I believe you will get used to signing your nick or name the more you do it. I am looking forward to hearing, reading, and knowing more about you Laura. God bless you . faith and hope, Sandy Sunday, December 02, 2001 08:12 PM sandy, I keep forgetting to sign... sorry.. Laura Sunday, December 02, 2001 08:11 PM Thanks guys, for your compliments. It is wierd because music is second nature to me. My grandmother was a professor of music and I was her 'prized pupil' Not fun when I was first on for recitals. I began my classical training at the tender age of 5 years old, and she had me playing Mozart, Beethoven, and Chopin.. and of course, my fav- Bach, by the 6th grade...I branched away from classical and began to write my own in my early teens. I had the luxury to work at one of the original guitar centers in the late 70's and have been in 4 bands. Now, I have 2 upright pianos and a Yamaha 88 key midi. All of the songs, however were written strictly by computer.. I have a wonderful program called cakewalk and I prefer to use my mouse and click the notes on the staff it provides, rather than use my midi.. this is much more time consuming, but it leaves less room for timing errors. Cakewalk has the capability to lay several different tracks and you have the choice of many, many instruments. The key is finding what sounds good together. I, personally, have discovered the fun of drums, and get my windows really rattling here at home.. If you do not have windows media player downloaded, or the recent update to it added, I strongly urge you to do so. It makes music so much better on the computer. Another suggestion is to hook up an equilizer from your rack system through your computer and use speakers from your stereo, even surround sound. Who needs those dinky computer speakers when you can have full sound.. Music has always been a huge part of my world, and I am happy to share it here. Sunday, December 02, 2001 02:39 AM Good Morning Porch Family, I am back after 5 blissful nights of rest. From looking around in cyberville, it would seem that many are sleeping better these days. I hope that is the case and all are tucked away cozy in the beds dreaming sweet dreams. I got a suprise yesterday morning. My mother whom I have not seen in a year and a half walked in the door with my husband at 11 AM. What a suprise! She will be here until Tuesday. Keep on dreaming your sweet dreams.... for now, I think I'll just sit a spell and rock. Tenacity But for the Grace of God, Go I! Sunday, December 02, 2001 01:04 AM Hello All, I hope everyone is doing well. Laura Dean I just listened to all of your music. It was absolutely wonderful! How can we thank you for your generosity of sharing it with all of us. You are truly gifted! Nan Saturday, December 01, 2001
11:24 PM
Laura it's wonderful to have the opportunity to create a place where you and so
many other talented people can be heard and seen. I thank you for your willingness
to share and your ongoing participation in Virtuality. (pwnkle)
Saturday, December 01, 2001
10:55 PM
CrossPosted Information from the Post and Chat Board.....IMPORTANT INFORMATION!! I
participated in the Love Bug Game last year and it was fun and uplifting. I, like
Ryan hope there will be a huge turnout of participation. faith and hope, Sandy
2nd Annual December "Love Bug" Support Game Objective: The reason for this
activity, is to keep you and others from getting, or staying down through the
Holidays. I know that you can’t cheer up others properly when you, yourself is
down. As you give others a "REASON for the SEASON" you will be talked to or written
to, as well. Both "BUGGED" & "BUGGER" {? LOL} will be blessed. It’s hard to help
others to count their blessings without counting your own. "LOVE BUG" REGULATIONS
1. Read all the regulations to decide if you would like to participate. 2. This
drawing was open to anyone who has the Christmas Spirit. There are Parkies,
caregivers, & friends entered. ALL participants are welcome volunteers. 3. If you
wish to participate, send your name and e-mail address to me (Ryan Tripp) at
ryan.tripp@sympatico.ca by Saturday, December 8, 2001at midnight. 4.The names will
be drawn, by numbering the total participants on pieces of individual papers. Then,
putting them into a bowl & drawing them, one at a time. Each name pulled will be
placed beside my Master list of names, which will be recorded in the order that
they register. 5. Within a couple of days, I will be sending you, the "LOVE BUG,"
both who you drew {to be BUGGED}, & who drew you {who’s BUGGING you}. So you KNOW
why that new e-mail’s there. 6. On or before 12-15-01 thru 01-02-02 you will email,
daily, words of encouragement, love, friendship, or positive re-enforcement to
your "BUGGED." Even if you are away for part of the time, no problem. 7. NOTICE!
There are NO romantic, or sexually explicit comments allowed in this program. There
is a time & a place & THIS AIN"T IT! 8. Drawing is final. If you can’t be with the
one you love, love the one you’re with. I hope that you will give serious
consideration to participating in this, both fun and helpful activity. The
registration desk is open for business. Just picking up on a great activity, co-
ordinated by Toad, last year. Hoping for a happy, healthy holiday season! ryan
aka tripper
Saturday, December 01, 2001 05:39 PM I did hit the RESET button and I think I lost the message...it was not important anyway. Is the December issue of Virtuality out yet? Mary Whitelaw Saturday, December 01, 2001 05:37 PM I did hit the RESET button and I think I lost the message...it was not important anyway. Is the December issue of Virtuality out yet? Mary Whitelaw Saturday, December 01, 2001 05:36 PM Saturday, December 01, 2001 05:31 PM Hi Sandy and everyone: It is a cool and windy day here in southern Ontario. Got out for a short walk with the dog right after lunch, came in and meds went off. I have been up and down like a yoyo the last few days. I will be glad when they settle down afain! It makes it hard to get anything done. I have taken a few new photos and will be putting some of the into Webshots.com. I hope I have some that are good enough. It is almost too dark outdoors now even at midday to taking pictures. Last night I went outside and took a shot of a beautiful huge full moon and silvery clouds streaking across the sky. On the camera I got a little silver dot in the middle of a big black patch. I guess the moon is too far away. If anyone out there who has had PD for a long time (I am the same time as Sandy), I would appreciate it if you know of any tricks that help stabilize the drugs. When I am "off" I have trouble breathing and this often brings on a panic attack. My doctors are concerned about the panic attacks and the surgery for DBS. If anyone knows any breathing techniques that would help get it under control, I would really appreciate hearing about them. I is really exhausting. E-mail Mary: asbtractmouse@yahoo.ca Friday, November 30, 2001 09:05 PM Wow Great Music Laura Dean!! I hear ya girlfriend!! Lets hear for Laura Dean!! Yea!! faith and hope, Sandy Friday, November 30, 2001 08:06 PM just wanted to say that I have been honored (thanks so much Carole)to have my music be a part of the ecard shop on plwp. My heads gettin too big here, you guys.. thanks so very much.. Laura Dean http://www.plwp.org/Card_Shop_music.htm Friday, November 30, 2001 01:40 PM Good afternoon, I have spoken to Sylvia today. She says hello and she misses everyone. She has checked on the delivery date of her new Gateway computer. That date is now projected to be December 7th. She can get e-mail and send e-mail and that is all. It is still a rainy day. It has been a queasy day for me. I am hoping you are having a good day with little or no symptoms. May you share a giggle with a loved one and be thankful for today. faith and hope, Sandy Friday, November 30, 2001 01:32 PM Hello Sandy: I seem to be doing everything wrong today. Medications are behaving badly and have been locked up for most of the morning. It is 1:30 pm and still raining. Took dog for a walk and hoped to get a picture of the golden asparagus plants dripping in droplets of water. Alas, started raining harder so we had to come back inside. "Happy Shaker" http://communities.msn.com/HappyShakers If that does not work, try a small "s" for Shakers. I sent you an invitation to webshots directly from the site to your home email address. That was the only way I could do it. There are six albums and each one has a different URL. If anyone wants to view them, just have the forward me their own e-mail address and I will be happy to share. Bless you all Mary Whitelaw Friday, November 30, 2001 08:42 AM Mary, I tried the Shakers address and I got a message stating that they could not find the site. I will keep trying. I hope all is well today. It is a rainy day here today. Liquid sunshine! Be blessed! I will check out your pictures today. I am a bit under the weather today so I am kinda on the slow side. faith and hope, Sandy Thursday, November 29, 2001 07:43 PM From Mary Whitelaw: Lets try this one again: http://www.webshots.com/user/abstractmouse Five Photo Albums: Beautiful Blooms, Beautiful Blooms 11, Out and About, Out and About 11, Pets I am not sure if you can access using the above or not. Hopefully so. Thursday, November 29, 2001 07:40 PM Hi: I am back and I have the URL to HAPPY SHAKERS if anyone is interested. Please feel free to visit. http://Communities.msn.com/Happy Shakers Please let me know if it does not work. I did visit Webshots.com and I forwarded an invitation from the site for everyone who wishes, to visit my 5 photo albums. I am not sure if I did it correctly or not. I think this may be the way to get there. www/webshots.com/user/abstractmouse I will check back tomorrow and you can let me know whether or not these addresses worked. If they didn't then I will check it out. A cool wet day here in southern Ontario. I have been totally lazy and am still in my pajamas. Won't have to get ready for bed tonight! I hope there is some sunshine tomorrow so I can get outside with Rosie, my dog. For the second time, good nite all! Mary Whitelaw Thursday, November 29, 2001
07:23 PM
Hello Everyone;
Read the following and see what happens when you look at things from a different
point of view. It expanded my horizons, lol. You'll understand that one in a
minute.
Chocolate is a Vegetable
Chocolate is derived from cocoa beans. Bean = vegetable.
Sugar is derived from either sugar CANE or sugar BEETS. Both are plants, which
places them in the vegetable category. Thus, chocolate is a vegetable.
To go one step further, chocolate candy bars also contain milk, which isdairy. So
candy bars are a health food.
Chocolate-covered raisins, cherries, orange slices and strawberries all count as
fruit, so eat as many as you want.
If you've got melted chocolate all over your hands, you're eating it too slowly.
The problem: How to get 2 pounds of chocolate home from the store in a hot car. The
solution: Eat it in the parking lot.
Diet tip: Eat a chocolate bar before each meal. It'll take the edge off your
appetite, and you'll eat less.
If I eat equal amounts of dark chocolate and white chocolate, is that a balanced
diet? Don't they actually counteract each other?
Chocolate has many preservatives. Preservatives make you look younger.
Put "eat chocolate" at the top of your list of things to do today. That way, at
least you'll get one thing done.
A nice box of chocolates can provide your total daily intake of calories in one
place. Now, isn't that handy?
If not for chocolate, there would be no need for control top pantyhose. An entire
garment industry would be devastated. You can't let that happen, can you?
REMEMBER: "Stressed" spelled backward is "desserts"
Joy today when and if you eat a chocolate bar! YUMMM Carolyn
Thursday, November 29, 2001 07:19 PM 7:15 pm Hi Sandy and All: I am beginning to feel as if I am amoung friends all ready. Speaking of journaling, I had thought about it at one time. In fact I am acquainted with "Mischef" and she tried to talk me into it. I WAS interested but I found that I just had too many demands on my time. Now after being "on hold" with my PD for more than two years I am still having a hard time to keep up. I have already had to pass on some responsibilities to others. It has been a full time job just keeping notes on all the medical appointments I have had lately. Re pictures: After I have completed this message, I will get out of this website and I will go into Webshots.com. From my community page there, I will send an invitation to this website and anyone is welcome to view my photos. Please keep in mind that I have only being doing this since August and I am still an amateur. I have really enjoyed it and I can't wait for spring to come again. I will also send you a URL to the MSN Community "Happy Shakers" which I co-host with my friend, Larry. It too is still in the construction stage. We are looking for members who would like to participate. I have had a full day and am almost ready to shut down the computer. Good night to all. Mary Whitelaw Thursday, November 29, 2001 04:41 PM Hi Sandy and Parky Porch friends, Even though parts of British Columbia had snow yesterday, here in Port Coquitlam we had lots of rain, but now the sky is blue and the sun is shining beautifully. They say that "if you don't like the weather out here, just wait five minutes and it'll change." My friend in Alberta sent me some jokes about exercising. The best one goes something like this: "I have to exercise first thing in the morning - before my brain knows what I'm doing!" lol This morning Michaela and I went to the school to see Hayley in a little play. It was really cute. I love being a Grandma. Sandy, thanks for asking about the book. I've been told by the publisher in Ontario that I should hear something by around December 10th. (They are in a 2- month back-log at the moment). However, I did get a phone call from the reporter who interviewed our women's writing group, to say that she really liked the story outline I gave her to read, and if she can, she'll use it for a story some time in the future. I won't be here tomorrow as my son-in-law has the day off, so he will be doing the child-care. So I'll wish you all a very enjoyable weekend, and I'll post again on Monday. God bless you all. Pauline Thursday, November 29, 2001 10:24 AM Good morning Mary, I am so glad you came by for a visit. Before I forget....I cut and pasted where you said your pictures would be. I made the trip but I did not know what to do when I got there. Is there a name to the photos? I would love to see some of your work. Have you considered Journaling for PLWP? I imagine you have a lot to share especially with your up and coming DBS. Having had pd for the number of years that you have had I bet you have a lot of wisdom. Are you familiar with the Journals? Try this link....http://www.plwp.org/journals_public_viewing.htm . I will find out who you need to be in contact with if you would like to Journal. I hope to see you quite often Mary. Have a blessed day.... faith and hope, Sandy Thursday, November 29, 2001 05:26 AM Wednesday, November 29/01 4:45 am Hello Sandy: Thank you for inviting me to your porch. It is a wonderful place. The rocking chairs too, so comfortable. My name is Mary Whitelaw and I have had PD for 22 of my 55 years. I was able to work up until the summer of 1995. I have felt lonely since then. I am married to Christopher (Chris) and we have a little white dog called Rosie and have a geriatic cat called Barney. My son is grown and lives fairly nearby. I have been a PLWP member for quite some time. Almost at their beginnng. I used to do a bit of writing and I had some articles published in 'VITRUALITY'...May, June, and July 2001. There was a poem "WHY", an essay titled "SPRING" and my own message "I CAN ONLY DANCE AT DAWN" about my own encounter with PD up until the end of December, 2000 inclusive. I am entering phase two lf my life with PD. I am about to have DBS early in the new year. I have been undergoing some tests and there are still a few more hurdles to get over. I used to do some writing and a lot of computer graphics. I fell into a new hobbie last summer, when I bought a professional model digital camera. I had a wonderful late fummer just clicking and clicking. I do all my own printing and photos may be matte finished or they may be printed on glossy photo paper. I think that Bright white looks the best. Thank you Sandy for allowing me to vent of your porch. I will return another time. I have set up some photo albums at http://www.webshots.com where they may be viewed by anyone who wishes to. My friend, Larry and I have also created a MSN Community for people with PD. Anyone can join though. We are still getting it organized but it open, membership is free. This site is a place for parkies to forget about PD and just have fun. I can furnish the URL at a later date if anyone is interested. Thursday, November 29, 2001 04:36 AM YOU GO GIRL CAZ!!! faith and hope, Sandy Wednesday, November 28, 2001 11:35 PM My thoughts have been positive. Positive I blew out my new machine. LOL Actually I blew a fuse in it. Who'd ever think a sewing machine would need a surge protector but then again it is a computer. I am so upbeat since getting back into sewing. I love it. Also watched Brendon today and I'm positive he is getting better. Back to daycare for him tomorrow. I'm also positive that I feel better because I'm so busy. Daughter cooked supper and that was positively the greatest. Only negative thing today was wet, dreary weather but then again it could have been snow. Hope you all have a positively fantastic night of rest. Love you. God Bless!!! CAZ Wednesday, November 28, 2001 03:35 PM Hello Dear friends and family, I have an interesting question for you. To give an answer will require some inward searching. I hope you don't mind my challenging your mind today. Participate if you wish. If you decide not to participate I hope the question will give you a moment's pause. From the moment you got out of the bed have your thought patterns been more positive or negative? faith and hope, Sandy Tuesday, November 27, 2001 06:03 PM A gracious good day to one and all. It has been uplifting to read everyone's postings and to see that you all are fine. I have always wondered how people get so interested in sewing and such and i think i have found the answer..the cold winter months lend themselves perfectly to these indoor activities. The desert is having an unusual cold snap...hit 50 today and tonite may be in the 20's or low 30's. It just makes me appreciate the warm days that we have...esp when, for me at least, my symptoms get worse when it is cold and i am becoming a slug lol. I just about have all the family christmas done which should allow me to enjoy the season more. It has been just about 1 yr since i left work and went on disability and in that year it has been filled with ups and downs but the growing experiences are defintely there. I feel like i am a different person..good or bad doesnt matter... just that i am different. I try to analize what has changed but there are so many interlocking reasons that to pick one would not amount to anything. Have decided to work on some things this next year so if i become invisible just know that i will think of you all and send good thoughts and positive ones filled wiht hugs to one and all. Have a warm,memorable holiday season filled wiht lots of love and joy. Happy holiday........phx Tuesday, November 27, 2001 03:32 PM Dear Laura Dean, It sounds as if you and I have been on the same journey. The past year has been a year of self-discovery. As always, Laura, I am so thankful for your willingness to share. You are right on target. We all should be thankful for the added knowledge to our minds that living life perpetuates. faith and hope, Sandy Tuesday, November 27, 2001 12:22 PM Good Morning porch.. As this year begins to wind down, I begin to think about what I have gained in knowledge during its months. It has been a difficult year for me, but through each trial there is a knowledge that becomes earned. Without going into specifics, I have found waiting at the end of my experiences wisdom added in: understanding and accepting human nature, the price of pride, accepting that I have faults and the fact that only I can work to better them, a little kindness goes a long way, sometimes it is best to not say anything, a hug is sometimes all that is necessary, there is nothing wrong with spending needed time alone, what I hear is not always what people are saying, looking into a persons eyes can tell alot, and to never judge someone too harshly. Each year we grow older. In age and in wisdom. As easy as it is to curse the added years to our body, we need to be thankful for the added knowledge to our mind. forgot to sign.. Laura Dean Tuesday, November 27, 2001 12:20 PM Good Morning porch.. As this year begins to wind down, I begin to think about what I have gained in knowledge during its months. It has been a difficult year for me, but through each trial there is a knowledge that becomes earned. Without going into specifics, I have found waiting at the end of my experiences wisdom added in: understanding and accepting human nature, the price of pride, accepting that I have faults and the fact that only I can work to better them, a little kindness goes a long way, sometimes it is best to not say anything, a hug is sometimes all that is necessary, there is nothing wrong with spending needed time alone, what I hear is not always what people are saying, looking into a persons eyes can tell alot, and to never judge someone too harshly. Each year we grow older. In age and in wisdom. As easy as it is to curse the added years to our body, we need to be thankful for the added knowledge to our mind. Tuesday, November 27, 2001 04:14 AM Awww Caz, I hate that your grandson is sick. It sounds like he did not make too much of a fuss though. I am tickled that you are staying busy with your sewing. The best thing about it is that it makes you happy. I am wanting to get a few things out to Joan's Jitterbugs too. Trying like the dickens to get the "stuff" in the mail before Christmas. Uh oH is that a sewing machine I hear? Caz behave yourself, and enjoy yourself along the way. Love you honey. faith and hope, Sandy Tuesday, November 27, 2001 02:38 AM Hi Sandy, I'm so glad you liked the beaded doily. It gave me great pleasure making it for you. Grandson is sick. He was so looking forward to Thanksgiving. After church on Thurs he said "OK now it's time for turkey and stuffing and cornbread" When we got to nieces he fell asleep for a bit and then wanted to go home. He saw Dr Fri a.m. and has ear infection. As he won't take medicine the dr gave him 2 shots. Now his nose is constantly running. the poor little guy. I'm busy sewing up a storm. Plan to sell items and donate 10% to PD. Will also take some items to jes's jitterbug when I go there which hopefully will be before Christmas. I'm off to bed. Have been staying up way too late sewing but I sure enjoy it. Love and God Bless little sunshine Caz Monday, November 26, 2001 10:35 PM Geeee, I believe I may have fallen asleep there for a minute. I hope you can read the mixed up pd foreign language. Good night. Sandy Monday, November 26, 2001 10:32 PM Hello, I am stopping in before saying goodnight. I spoke with Sylvia again. Unfortunately, downloading her e-mail from her hubby's computer caused her hubby's computer to "act up." I do not know the details soooo...please keep remembering her. She did give me the good news that she expects her new computer as soon as early next week. Yipeee! Pauline...yes I believe speaking before realizing it is a bit Jeckyllish. Thanks for sharing with us. I cannot picture you with any Jeckyll traits though. I hope you do not mind me asking again how the book is coming? My pd memory cannot remember if I asked last week or not. I am still remembering you in thoughts and prayers and will continue long after the book is in PRINT. What about granddaughter....and Caz, how about that grandson? Luvstosew, are you lurking out there? I got your message on the phone. I hope you had a good weekend. How are Mike's parents? Give Mike our love. Now with one eye open...and one eye closed ...I am headed down the hall to bed. faith and hope, Sandy For a change I am getting the droopies. Eye lids are getting heavy and I do not want to miss this window of opportunity. I go back to the dentist tomorrow at 2 pm; prayers would be greatly appreciated. May you all have the best night's rest that you have had in a while. May sweet dreams be yours and may you awake refreshed. Take care and may God bless you. faith and hope, Sandy Monday, November 26, 2001 05:46 PM Special Message to a porch friend, you know who you are. Write, write, write. God blessed you with abundant talent and you are beautiful. I was moved beyond words when I read your writing. Start sharing more with everyone and soar like an eagle though I know that is not your national emblem. Do not put your light under a basket....I love you my dear Monday, November 26, 2001 04:53 PM Hi Sandy and Parky Porch Friends, Sandy, I don't know if this qualifies for a "Jeckyl" moment, but sometimes my brain doesn't kick in until five minutes AFTER I've said something really stupid! Happens to me all the time! Other than that, I'm doing quite well, as long as I don't sit for long periods of time. I had my son Elliot, wife Gosia and little Maxwell (2-1/2) over for supper last night. Elliot is a vegetarian, so I made mushroom and onion quiche, with mashed potatoes and broccoli. I was kept busy, but I felt great! After they all went home, I relaxed and watched the movie "You've got mail." All in all, it was a great day. Did anyone find out anything about steroids? God bless you all. Pauline Monday, November 26, 2001 03:52 PM Hello dear friends and family. Okay what is up? Has everyone gone into early parkie hibernation? I include myself in that query. I admit I have been lurking. Caz thank you for the sunshine today. Caz sent me a beautiful beaded crochet doily/centerpiece. It is absolutely radiant. It is in my favorite color, lavendar. It has brought sunshine to my day and gave me a quick kick in the rear end. I have come to the end of those dreaded 10 days of each month in which I turn into an alien because of my "monthly". Alien? Why do I say alien? Because during that time I don't know who I am, what I am doing nor do I know where I am going. You know the Dr.Jekyll/Mrs. Hyde syndrome? Can anyone identify with this? Please do not tell me it is "just" me. At any rate...things are definitely looking up. I consider myself blessed. I have 20 great days of the month. I have been out three times today. Yesterday and today....two days in a row I have been able to go to my very favorite place, which happens to be the library. Where else can one find all those pages of knowledge and have the ability to use their imagination while reading and going anywhere in the world? Lauren Bacall once said that the imagination is the highest kite anyone can fly. I believe that 100%. Plus feeding the brain is a very good thing. I spoke with Sylvia today. Her thanksgiving company is safely on their way to their homes. She has ordered her new computer. Even greater news, she continues to be doing well on the Requip and Sinemet. Well...maybe I will stop by before bed tonight. I am gonna go rest and then get a bite to eat. Any lurkers care to step up to the plate? Any Dr. Jekyll's? How have your days and nights been? In what form has your sunshine spread its sunbeams? And how have you used your imagination. I feel like an all night slumber party. Anyone care to come over and share your imagination? Not to mention all the munchies...and hot chocolate, and chocolate too. I can hear the child-like giggles now. faith and hope, Sandy Sunday, November 25, 2001 05:32 PM Hello dear porch family and friends, I received a phone call from Sylvia Cable today (seasongood1). She is having computer woes. Her computer crashed and she is having to purchase a new one. She wanted me to pass the news on. Keep her in your thoughts and prayers. We all know what "doing without our cyber connections" is like. She is able to check e-mail from her hubby's computer. If you would like to e-mail her .... seasongood1@msn.com . faith and hope, Sandy Saturday, November 24, 2001 11:49 PM Thank you Laura. Faith and hope, Sandy Saturday, November 24, 2001 11:44 PM The Final View Laura J Dean My tears will have to wait to fall, as right now you need not see them. Your spirit needs to rest apart from sorrowed eyes and the wet reflections of reality they store. You need the peace that a smile holds. No more… No less. As the tests fail and they add more drugs, You will need the strength from your best friend adding to the fortitude left inside of your beautiful frame. When the questions become too overwhelming, I will know the answers you seek and once found, will not withhold or camouflage them from your view. On the rainy days, I will escape with you into the scenery which surrounds our history. There we will find the warmth that we always ignite, by playing games, dancing, singing and getting lost in make-believe's sanity. I will look to your face and boldly sketch every line as your portraits passage into my memory’s eye. My tomorrows have no solo importance now. Instead, they relish in each morning you awaken to. We will go through this, my dear as we have gone through everything else. By looking at life through the eyes of our friendship. With a wink, a sure gaze, and a knowing of truth. The kind of truth no other person can possibly come close to understanding, because of the simplistic reality of it's depth. My eyes cannot and will not stray from you. They need you more than they need nurturing moisture. If your vision ends, and you leave my side, Then, and only then… Will I look away from you And allow my tears to fall. Saturday, November 24, 2001 10:58 AM Our next Psych Chat has been scheduled for Saturday, November 24, 2001 at 11:00AM. As of now we plan to meet in PLWP2. If this changes, it will be posted here. The topic for this chat is: The Dreaded Holidays. The same group rules as before apply: one on one with Dr. Martin, and a reminder that everyone is asked to stay on topic. Lurking is permissable, and, indeed, encouraged. See you on the 24th. Sylvia Saturday, November 24, 2001 02:26 AM how is my sister sandy? we need to get together and eat some big gooey chocolate anything. miss ya,love toadie Saturday, November 24, 2001 01:45 AM Glad you made it Sandy, it was a rare treat and pleasure to have your company at our little shindig last night! (hard to keep those lurkers quiet!) lol We'll offer you a special dispensation to join us whenever you feel the need to giggle! Cheers Bella Saturday, November 24, 2001
12:58 AM
from pwnkle;
We ask you all to send us your holiday greetings in a voice recording, writing( via
email),art,photos,poems,stories or hand made greeting card to publish in the
upcoming issue of Virtuality.
We'll have links as 'gifts' under the virtual Christmas tree in 'V' and each link
will be something personal from a reader that conveys good wishes.
We need this soon, Virtuality will be published to the internet on the first of
December so please hurry and send us your holiday cheer to share with each other in
this December issue! cmcleod@one.net
Friday, November 23, 2001 10:17 PM I hope everyone had a wonderful Thanksgiving. We were blessed with having our two children and our daughter-in-law with us for the day. Today (Friday) my daughter and I continued a tradition we started a few years ago -- early shopping on the day after Thanksgiving. She loves it, and she has the two of us up before 5:00 a.m. to get ready for the great day of Christmas shopping. She loves it.....I would rather be in bed sleeping, but since this is a great tradition for her of Dad and daughter doing something special, I go each year. We arrived at the shopping mall before 6:00 and became a part of a massive crowd of shoppers standing outside in the cold. We had shopping items on our lists which were in limited supply, so we divided the items between us, and my daughter gave the battle, sorry, shopping plan to me. We would make a dash to the areas where these items are found, and after we made our purchases we would meet in a particular area of the mall to have breakfast. She is 28 years old and in great physical condition; I am 52 with Parkinson's and a cane so my dash was more like a turtle's pace. We survived the experience (ordeal), we had everything purchased we went for, and thankfully this "father-daughter event" is over for another year. I hope each of you have a tradition that is special for you. David Vaughn (drv14) Friday, November 23, 2001 08:13 PM Hi Parkie pals, I have been thinking of all the changes I have gone through in the last two years since I was diagnosed. It is hard to believe sometimes that all that has changed for myself and my little family has only taken two years. So with all the not so fun PD changes, I decided to list some of the good changes. I no longer own my own business.(no more 70 hour weeks away from home, no more wondering if I am going to make it through the slow times) I have a much better relationship with my sisters. (we are known as the Tri-B Tribunal in our family) I have met and made friends with some truly wonderful people, both on the net and in person. I have a better relationship with God. I have learned, again, that life is in the simple details, that a good laugh is better than any amount of money, and that I am not alone. And so, in a odd way, I am grateful for the PD. I hope that all of you out there can find some goodness in your days. In the dark parts where you are having to deal with agencies that seem not to care, and money problems that seem to never go away, and the wonderful world of phamacology, remember, you are loved, and in someone's mind every second of every day. Have a great after Thanksgiving weekend. Sue Friday, November 23, 2001 05:52 PM Happy Day After Thanksgiving; The weather outside is chilly and I stared at my wicker rocker today on my front porch knowing it is going to have to be relegated to the garage for a season or two. But then I dropped into Sandys porch and realized I'll never stop having a rocker here at least and the companionship offered here as well. Good thoughts! Its been an early day starting at 4:30 but since I was up I thought I'd internet Christmas shop. That was mistake number one. The online numbers for many of the toys I was looking for for the grandchildren were not printed properly, not available online or they were out of stock. But being the subborn soul I am I still refused to get in the car and drive to the land of insanity known as the mall some 15 minutes away. That fate sounded worse and I heard from others my decision was a good one! Pauline I hope I'm receiving the latest of your writings! Never did get that xmas tree up but I did have more help than usual in the kitchen which was much appreciated. And my secret about the side dishes from Honey Baked ham was safe. I just added more broccoli to their casserole and nobody outside the home knew it. So the word from here is two thumbs up if you are not able to do the dinner yourself or don't have assistance. Take care everyone. I hope your day was great and try to not become too stressed in the coming weeks. Take some time for reflection, a little pampering and your favority hobby because these days of little sunshine can really play havoc to those that thrive in Florida type weather. Diane we will continue to support you with prayer and loving thoughts. He will lift you up on eagles wings.....keep remembering that at this so difficult time in your life. Take care and Joy today to everyone, Carolyn (Gunny) Thursday, November 22, 2001 05:28 PM Hi Sandy and Parky Porch Friends, I hope you all had a wonderful thanksgiving, and didn't eat too much turkey. Yesterday, the "Women and Words" writing group I belong to was interviewed by a reporter from one of our local newspapers. In a couple of weeks we are putting on a poetry reading at a local cafe. The reporter was surprised to see we were totally normal working women (she was expecting chrystals and long flowing dresses). When she found out members of the group were realtors, secretaries, at- home mum's and office workers, she was amazed.) Sandy, I'll send you a copy of the item when it appears in next Thursday's Tri-City News. (I got my picture taken too.) Has anyone out there investigated the use of steroids to help PD symptoms? I received my UK Parkinson magazine the other day and there was a letter from a woman who reported that everytime her husband was put on steroids for an upper respiratory problem, his PD symptoms improved drastically (muscle pain, balance, stiffness, co-ordination, speech all improved). I would be interested to find out, so I can reply to her enquiry. I was again totally inspired by all your thankfulness - everyone give yourself a hug from Pauline, OK. Carolyn, I hope you have recovered from your fall. You should receive an envelope from me in a couple of days. God bless and take care. Pauline. Thursday, November 22, 2001 03:42 AM God Speaking The man whispered, "God, speak to me" And a meadowlark sang. But the man did not hear. So the man yelled "God, speak to me" And the thunder & lightning rolled across the sky. But the man did not listen. The man looked around and said, "God, let me see you." And a star shined brightly. But the man did not see. And, the man shouted, "God, show me a miracle" And a life was born. But the man did not notice. So, the man cried out in despair, "Touch me, God, and let me know you are here". Whereupon, God reached down and touched the man. But the man brushed the butterfly away and walked on. I found this to be a great reminder that God is always around us in the little and simple things that we take for granted. .even in our electronic age . . . so I would like to add one more: The man cried "God, I need your help" . . . and an e- mail arrived reaching out with good news and encouragement. But the man deleted it and continued crying..... The good news is that you are loved. Don't miss out on a blessing because it isn't packaged the way that you expect. Thanks for all your emails of encouragement and posts here on the porch. We are indeed family. With a smile on your face and Joy in your heart may you feel His presence all day through. Love Carolyn Thursday, November 22, 2001 02:14 AM Well here it is 1:34 Thanksgiving morning. Happy Thanksgiving dear ones. I am cutting up all the vegetables needed for tomorrow's vegetable platter. I have Aretha Franklin's greatest hits playing on my CD player. I thought I would take a break and catch you up on a few things. If you have felt alone this week I wish to convey to you that my thoughts are always with you. These holiday times can be very stressful on us and each year it is always something different. This year my stress has been my food stamp benefits, whether or not I will have help with meds, all this dental work I am still undergoing, and finally and not necessarily the least I have been writing and filing my own divorce. I am happy to tell you that my court date to stand before the judge for my divorce has been set for December 17th at 9:30 am. I am telling you this so that you can possibly be praying for me on that day. I have so much to be thankful for. Honestly too many blessings to count; but I am gonna give it the good ol' Parkie try. I am thankful for the personal relationship I have with God. Without God's tender mercies and loving grace I would find it terribly hard to live life. I can sit here and remember, like it was yesterday, kneeling at an old fashioned Baptist altar in Somerset Kentucky and asking the Lord to come into my heart. I can honestly tell you that this week I have crawled up into the lap of my Heavenly Father so many times I have lost count. The love and deep comfort that I continue to faithfully find in the Presence of God cannot be placed into words. It is a deep personal, loyal relationship. At any rate.... I am thankful for all my dear ones here at PLWP. Of course I am humbled into thanksgiving for this beautiful Porch and all that is represented here. When I come here and rock and visit with each one of you I am blessed with a peace of mind. Of course there are times I have come here and stepped away praying harder for all of us. I want to thank each and every one of you. I want to thank you for getting out of bed each day and placing one "shaky" foot in front of the other. I want to thank each one of you for the openness you share. There has been many times that you have come here hurting and yet before you submit your post you will reach out to someone else who may be hurting and in need of your friendly touch. I thank all of you for your love and your friendship and your continued show of compassion. I will be thinking about each and everyone of you today and small heartfelt prayers will be going up on your behalf. I have enjoyed my little break with you...but I best had better get back to my vegetable chopping. It is safe right now for me to have a knife in my hand. Any one care to reflect with us today and share your thanksgivings? May God Bless each and everyone of you. You are very dear and precious to me. faith and hope, Sandy Wednesday, November 21, 2001 09:23 AM Our next Psych Chat has been scheduled for Saturday, November 24, 2001 at 11:00AM. As of now we plan to meet in PLWP2. If this changes, it will be posted here. The topic for this chat is: The Dreaded Holidays. The same group rules as before apply: one on one with Dr. Martin, and a reminder that everyone is asked to stay on topic. Lurking is permissable, and, indeed, encouraged. See you on the 24th. Sylvia Wednesday, November 21, 2001 06:28 AM Good Morning Everyone; I've been up since 4:30a.m. I have had an allergic reaction to Zoloft and I am still a nice shade of pink with thousands of little bumpies all over me. Search is on again for a new medication I believe. Right now I just wish one body part didnt have to touch another. lol Just when you think things can't get more interesting...they can and they do. Say ladies I found a great time saver in the kitchen for Thanksgiving. Since we sometimes get a little under the weather, I wanted to share this. Go to the Honey Baked Ham store if you have one in your area. I taste tested before purchase a wonderful Broccoli cheese and rice casserole serves 14, a large package of extra gravy, great sweetpotatoes and some spruced up applesauce. Cost $20. Saved my energy instead of running all over local supermarket and then preparing. Just throw out the boxes before company arrives and swear husband to secrecy. There you go....now I can sit in my rocker and wait for the Benadryl to kick in. lol I received and cross posted the following. Its good for meditation on this upcoming holiday. Value of time > > To realize the value of ten years: > Ask a newly divorced couple. > > To realize the value of four years: > Ask a graduate. > > To realize the value of one year: > Ask a student who has failed a final exam. > > To realize the value of nine months: > Ask a mother who gave birth to a still born. > > To realize the value of one month: > Ask a mother who has given birth to a premature baby. > > To realize the value of one week: > Ask an editor of a weekly newspaper. > > To realize the value of one hour: > Ask lovers who are waiting to meet. > > To realize the value of one minute: > Ask a person who has missed the train, bus or plane. > > To realize the value of one-second: > Ask a person who has survived an accident. > > To realize the value of one millisecond: > Ask the person who has won a silver medal in the Olympics. > > To realize the value of a friend: > Lose one. > > Time waits for no one. > Treasure every moment you have. You will treasure even more when you > can share it with someone special. Joy to you today and Thanksgiving to the Lord for this Porch With love in my heart and a smile on my face, thanks for letting me spend my days and nights with all of you!! Carolyn (Gunny) Tuesday, November 20, 2001 12:10 PM Pancakes!! yummy lol That sounded so good. That is what Brendon and I had for breakfast today. A few months ago I bought this beautiful sewing machine that does embroidery. Guess what? I'm already thinking of upgrading. I've been debating about it as it is big bucks. My hubby said do it as it automatically threads machine and as PD progresses I'll be able to keep sewing and keep busy. (Who is this man? LOL He sure has changed since retirement) I am selling things I've made so that will help pay for it. I am so blessed and Pauline I'm thankful for you and all the rest of the Parkie Porch. Just thought I'd drop in and say Hi. HAPPY THANKSGIVING everyone. God Bless. Caz Tuesday, November 20, 2001 07:35 AM Good morning again, I found a great one to share here; Paul Harvey Writes: > > We tried so hard to make things better for our kids that we made them > worse. For my grandchildren, I'd like better. > >I'd really like for them to know about hand me down clothes and >homemade > ice cream and leftover meat loaf sandwiches. I really would. > >I hope you learn humility by being humiliated, and that you learn >honesty > by being cheated. > > I hope you learn to make your own bed and mow the lawn and wash the >car. > > And I really hope nobody gives you a brand new car when you are >sixteen. > >It will be good if at least one time you can see puppies born and your >old > dog put to sleep. > > I hope you get a black eye fighting for something you believe in. > > I hope you have to share a bedroom with your younger brother/sister. >And >it's all right if you have to draw a line down the middle of the >room,but > when he wants to crawl under the covers with you because he's scared, >I > hope you let him. > > When you want to see a movie and your little brother/sister wants to >tag > along, I hope you'll let him/her. > > I hope you have to walk uphill to school with your friends and that >you > live in a town where you can do it safely. > > On rainy days when you have to catch a ride, I hope you don't ask >your > driver to drop you two blocks away so you won't be seen riding with > someone as uncool as your Mom. > > If you want a slingshot, I hope your Dad teaches you how to make one > instead of buying one. > > I hope you learn to dig in the dirt and read books. > >When you learn to use computers, I hope you also learn to add and >subtract > in your head. > >I hope you get teased by your friends when you have your first crush on >a >boy\girl, and when you talk back to your mother that you learn what >ivory > soap tastes like. > >May you skin your knee climbing a mountain, burn your hand on a stove >and > stick your tongue on a frozen flagpole. > >I don't care if you try a beer once, but I hope you don't like it. And >if > a friend offers you dope or a joint, I hope you realize he is not >your > friend. > >I sure hope you make time to sit on a porch with your Grandma/Grandpa >and > go fishing with your Uncle. > > May you feel sorrow at a funeral and joy during the holidays. > > I hope your mother punishes you when you throw a baseball through >your > neighbor's window and that she hugs you and kisses you at > Hannukah/Christmas time when you give her a plaster mold of your >hand. > > These things I wish for you - tough times and disappointment, hard >work > and happiness. To me, it's the only way to appreciate life. > > Written with a pen. Sealed with a kiss. I'm here for you. And if I >die > before you do, I'll go to heaven and wait for you. > >Send this to all of your friends. We secure our friends, not by >accepting > favors, but by doing them. Tuesday, November 20, 2001 07:33 AM Wonderful news of your restful night. faith and hope, Sandy Tuesday, November 20, 2001 06:42 AM Dearest Sandy; I slept all night in His peace which for some of us is nothing short of a personal miracle. The extra rest gives me hope that today I will dance. Joy at the dawn of a new day! Love, Carolyn Monday, November 19, 2001 11:21 PM Gunny, Your post has moved me to healing tears. No I know you have not gone looney. I can only think of one thing as a reply to your beautiful post .... God's peace is joy resting. His joy is peace dancing. While you are resting Carolyn in His love...allow your spirit to dance with joy. Love you girl. I thank God that you are in my life. faith and hope, Sandy Monday, November 19, 2001 10:36 PM Dearest Ones; It has indeed been a day of reflection and prayer as this day unfolded. I was in need of a heaping helping of Sandy so I called her this morning and truly was blessed as usual by her insight and prayerful words. Is it any wonder why this porch is so successful. Your ministry is flourishing Sandy. I do know that today would not have been as wonderful without you and the porch. That alone brings me great JOY. (There's that word again. JOY) As I sit here typing tonight I can say that yes, this day had smiles, laughter, tears, sadness but that is what gives us our humanity. We must give praise for all that is good in our lives. Sometimes and some days I know all too well that it is hard to seek and find the good, to be humbled and give thanks. This disease like a thief in the night robs us of our individual talents and it attempts to squeeze like a snake till the last bit of hope is gone. If we bear this in mind and know that these difficulties are but a small piece of the entire plan God has for us the overall perspective is easier to grasp. In the meantime He alone provides us the resiliance to withstand the strongest winds and the wisdom to set our sails accordingly. Today I also had another fall. Embarassing and humiliating besides the pain because the man that was behind me just about walked on and over me to be on his way. So much for dignity. And is that really me I see in the mirror. I asked my spousus how long since my dx and he couldn't tell but this is the same man that can give you stats for football, hockey etc. from 20 years ago. I reminded him how fast the journey of 10 years with sinemet is and that I am half way there. What I am saying is, life is worth living but only if we do so with zest according to our abilities. I know how much our caregivers love and mean to us but when it comes right down to it, we walk this road alone other than with God. No one really knows us better or feels the depth of our hearts love other than the one who created us. Trust in Him and we will never be disappointed. You may be wondering here if Gunny has flipped her top or is it the Zoloft. I am realizing for the first time that if Joy is meant to be it is up to me to find it and bring it home. It's not going to plop like bird droppings in my lap. That's why they call it Faith I guess. This is a long post and is very heartfelt. My love goes to each of you. May your individual journey be ever so smooth as you walk hand in hand with God. Joy be with you always my special friends. Carolyn (Gunny) . Monday, November 19, 2001 03:49 PM Hi Sandy and Parky Porch friends, I have read all your comments from over the weekend, and I have to say what a courageous, inspiring and encouraging group of people you are. I too am one of those people whose PD sent them from a comfortable working income to 2 small pensions. I missed out on my employer's disability benefits because the doctors didn't find out what was wrong with me until one year AFTER I had accepted an early retirement package, and then it was my sister-in-law who actually diagnosed me! Anyway, I just want to let you know, you have all cheered me up tremendously. I am patiently waiting to hear from two publishers about my book (they are backlogged right now). OK everybody else out there - STOP WRITING - it's my turn. lol Even though Canadian Thanksgiving was a few weeks back, my granddaughter Hayley, still loves to make us say what we are thankful for whenever we have supper together, so here goes. I am thankful for Sandy's Parky Porch, loved ones, dear friends, pets, the telephone, the computer, the ability to laugh at myself, licorice candies, creativity, my King James Bible and other good books, and most importantly, the love of God through Jesus our Lord. Without Him, I'd never make it through. God Bless you all. Pauline Monday, November 19, 2001 07:53 AM Good morning again Tenacity, Buttermilk waffles with butter and good old Mrs. Butterworth's maple syrup....yum, yum. faith and hope, Sandy Monday, November 19, 2001 07:07 AM Sandy, Yes, thanks, the meds did help my headache. Contrary to what may have been read between the lines, I am in pretty good spirits today. I do have the utmost faith that God will take care of all of us. You are right, praying for God to send a wind machine probably is not a good idea, although it could be quite amusing. Just think, all of us parkies, who have difficulty balancing to begin with, being blown off our feet. Now that is something I can visualize and giggle at. Time to write a tv script. I guess the best answer is just to keep positive, keep helping each other through the rough times and to keep our faith. I ache for you and Tim and the others that are facing such challanges. I wish that the journey for you did not have to be so rough. I wish that wishes would make it all better. So, on another note... what's for breakfast? Tenacity, But for the Grace of God, go I! Monday, November 19, 2001 04:53 AM Good morning Tenacity, Considering we have not been to bed yet. We have visited in IM chat. Now I see you here. Of course you are here with a voice that I am hearing loud and clear. Your tenacious self is heard!! I do not believe I could handle a wind machine this morning though. Plus that would be taking the control from God and I do not believe I have that strength to step in the way of His will. I know by asking for a wind machine He would be giving us a little extra push. You know as well as I do Tenacity there are not any short cuts. But I hear your wishes and prayers loud and clear. It is my prayer this morning that you will be given the grace to deal with the pain you are experiencing today. Did your pain medicine help any? Here is to hoping and praying you also see that beautiful sunrise this morning. Take care and God bless you. faith and hope, Sandy Monday, November 19, 2001
04:31 AM
Good Morning Porch Family,
As I sit here and catch up on the posts from the past week, my heart sinks
reading about all of the struggles each of you are going through. I know that God
provides and that he will open a window for each door he closes. That is called
faith. Sometimes however, I wish he would turn on a wind machine (one of those
high powered kind that are used to teach people about gravity) and put it between
us and that window so that the journey would be a little quicker.
It is hard not to be filled with anger for our government when it comes to
caring for those who truly need. Tim, you as usual, made so many valid points.
Our governments continued, non-failing, lack of support of its own people goes
without compare. Do they pick on the infirmed because they think we do not have
the strength to fight back? The paperwork, the indignation and their attitude
that if we get anything, they are doing us a favor, is appalling. Nothing new
with that statement.
To date, I have yet to meet one Parkinson’s person that has set to defraud the
government out of its precious resources. I have also yet to hear one Parkie
stand up and say, “Wow, I think living on food stamps, in government housing,
worrying about whether to pay the utilities or buy my meds is fun.” Or how about
this sentence, “I can’t wait to go to my SS review/appeal because the people there
show so much kindness and concern for my well being.”
It is almost a cardinal sin to think that one sees the SS appeals process
finally getting started as a positive event in our life. Oh thank you, thank you,
thank you dear Uncle Sam for allowing me to got to the point where you can further
degrade me. How I have longed to “prove” to you that what is going on with my
body is real, not mental. How I have longed for the opportunity to have my hands
tied behind my back so that I can beg to be able to stay off the street at night,
to have “just a little food, please” and to take medication that will allow me to
do something that you take for granite, move.
I get so angry because I know how it feels. The problem is, those that we have
to humble ourselves to, don’t. I am thankful to God and his mercy but if I can
submit a prayer to heaven this morning, it would be for a wind machine.
Tenacity,
But for the Grace of God, Go I!
Monday, November 19, 2001 03:44 AM Up and about shuffling around....with a flashlight and burlap bag helping pwnkle chase down gremlins. Go to the neighborhood page to see the chat thread between gremlin hunter and my sassy self. Now I am off to take a bath. Since I cannot sleep, I may aswell be squeaky clean. faith and hope, Sandy Sunday, November 18, 2001 11:04 PM Deb/Matty, It is good to see you. How is the Requip by the way? I have finally gotten myself on a good dosage of Requip. I surely hope you come back and keep visiting with us. I am sorry you have had a tough go of it. Nursing can be tough..not can be; it is tough. I admire you that you are hanging in there. I would be interested in hearing about how you are doing on the Requip. Be blessed and take care Deb. faith and hope, Sandy PS Happy Thanksgiving to you too! Sunday, November 18, 2001
01:59 PM
11/18/01
Hi Sandy & Friends --- It's been a two month stretch since I've posted on the Porch.
Haven't felt much like writing, esp. since Sept.11. Struggling to keep up at work -
large muscles are working better but handwriting, a large part of nursing, is slow &
excrutiating. I 'm working 12 hours/week and need days to rest. Typing on a
computer is draining - at the moment I'm down to one finger. Still, there's no
harm in hoping tomorrow will be better, right? It's a slow go, for sure. Guess I'm
still in denial somewhere.
Although I haven't written for a while, I think of you all often. Your many
kind words, sense of humor, expressions of support, & generous sharing of yourselves
has been greatly appreciated and humbling. Thank you, & have a Happy Thanksgiving.
Peace and Love to All, Deb --- P.S. I'm the Deb (PLWP2 ID - matty) who kept
asking about Requip : )----
Sunday, November 18, 2001
01:58 PM
11/18/01
Hi Sandy & Friends --- It's been a two month stretch since I've posted on the Porch.
Haven't felt much like writing, esp. since Sept.11. Struggling to keep up at work -
large muscles are working better but handwriting, a large part of nursing, is slow &
excrutiating. I 'm working 12 hours/week and need days to rest. Typing on a
computer is draining - at the moment I'm down to one finger. Still, there's no
harm in hoping tomorrow will be better, right? It's a slow go, for sure. Guess I'm
still in denial somewhere.
Although I haven't written for a while, I think of you all often. Your many
kind words, sense of humor, expressions of support, & generous sharing of yourselves
has been greatly appreciated and humbling. Thank you, & have a Happy Thanksgiving.
Peace and Love to All, Deb --- P.S. I'm the Deb (PLWP2 ID - matty) who kept
asking about
Sunday, November 18, 2001
01:56 PM
11/18/01
Hi Sandy & Friends --- It's been a two month stretch since I've posted on the Porch.
Haven't felt much like writing, esp. since Sept.11. Struggling to keep up at work -
large muscles are working better but handwriting, a large part of nursing, is slow &
excrutiating. I 'm working 12 hours/week and need days to rest. Typing on a
computer is draining - at the moment I'm down to one finger. Still, there's no
harm in hoping tomorrow will be better, right? It's a slow go, for sure. Guess I'm
still in denial somewhere.
Although I haven't written for a while, I think of you all often. Your many
kind words, sense of humor, expressions of support, & generous sharing of yourselves
has been greatly appreciated and humbling. Thank you, & have a Happy Thanksgiving.
P.S. A mind refresher: I'm the Deb (PLWP2 ID - matty) who kept asking about
Requip.
Peace and Love to
Sunday, November 18, 2001 11:45 AM Good Morning Lil' Brother, Please do not worry about being too wordy. Your post is exactly what my heart needed this morning. Yes, we all are blessed by freedom here in USA. Yes, there are things (a lot) about our government that suck outloud. Thank you from my heart Tim for coming here and posting. The reaching out and love and support make our difficulties shrink in size. I cried right a long with you this morning. I love you Tim. This too shall pass. I have faith to believe. There has yet to be a time that God has let me down. He is faithful. My needs are always met. My God, friends, family, and PLWP strengthen me daily. I got a huge blessing out of reading how God and your community has come through for you and the family. The ripple effect is being felt all the way here in NC. Tears are flowing...happy tears!! Ooops a big reminder to add kleenex to the shopping list! Wink and grin! Yes, things in life and living challenge us and try our inner strength. It is in the exercising of the "reaching out" and "caring enough to share" that strengthens our resolve. God bless you, my Lil' Brother Tim. Give Siobhan and the kids my love and know that more than likely as you pray I will be praying right along beside you, sure in different states, but our love shortens the distance. faith and hope, Sandy Sunday, November 18, 2001 06:36 AM My dearest sister. I hurt so much when you have these crossroads that the System creates for you. You know how I feel about the System. My family struggles to get help even on a local level. The town's social service department won't even let us visit the foodbank because Aidan and Sara's Social Security puts us over the financial guidelines for a family of four. God always works in strange ways though. I wanted to share this with my "big sister" and her readers. Most of us struggle especially as winter approaches. We require more clothes, heating costs start to play a role especially up north here where the winters are brutal. The holidays that cost money are all grouped together. Christmas still costs even if you cut back but that is hard to do when my little one's still believe in Santa. Aidan has a major dental operation this coming Friday that we need to shell out the bucks for and Sara needs braces which aren't exactly cheap. We got a phone call from a stranger asking Siobhan to visit her at home because she and the elderly folks in her "community village" have collected groceries for us. She gave us some groceries including a turkey and some vital groceries like the Carnation Instant Breakfast that I drink instead of Ensure. Then My Priest called before his weekly visit and he says a friend of his has given him a check for us. He also had a thanksgiving basket for us but I told him to keep the turkey. He also informs me that the parish has a food bank that is overflowing and we were welcome there anytime. I was crying while he was visiting because I was telling him how we were one day away from foreclosure just last week. He told me that if we ever needed help with the mortgage or with any other bill to just call him. (Who says the Catholic Church is greedy - you just have to have the right parish and Pastor who truly is a disciple of Christ.) When we got the mail that same day we received a check in the mail from a friend of our parish. It turns out this is the same man that Father Steve had a check from. Siobhan went out to buy a new mailbox since some turkey knocked over our's and crushed it and she came in screaming - she won $500 dollars on a scratch off ticket. Sara's braces are now partially paid for! God is good - nice guys don't finish last. The system sucks to put it as nicely as I can. Our government is sending so much money overseas to help those folks out - should they look at there own citizens first and then offer foreign aid. We should all fight this as best we can. Even the insurance company has screwed me and my 60% disability is far from 60% after they take out my social security, the kids social security, and the monies they had given me in the months prior to Social Security kicking in. Yes - what they do is legal but is it morally correct? - I doubt it. Here is a family that could once have a one worker household and we rarely had financial difficulties. Now with Siobhan taking care of me 24/7 we wonder somedays how we get by with those 2 checks we receive once a month. My copays olane for all my meds total $300. We are on the borderline from receiving any kind of aid. Imagine in this country a family can go from upper middle class to whatever class we are in now - the struggling class. It's a shame and to think there are even more people that are far worse off than my family - it brings tears to my eyes. Yes we are the greatest country in the world. We have to stop "rewarding" those who don't want to work when they are physically able or those who don't want to further their education to get a better paying job (the government gives them that opportunity as well). . a country that gives the lazy more money for having more and more children when they have no means of supporting these children, a country who recognizes without hesitation that drug and alcohol addiction are disabilities yet those with neurological disorders all but have to win a talent show to get recognized as disabled. Just to get Social Security we have to go through unnecessary stress, fill out endless forms, be reviewed by doctors who probably don't know their a** from their elbow, undergo psycholgical evaluations and other testing as well as give up their first born child. This is long, my dear but I know you and I have the same inner drive. Society wonders why so many under privelidged youth sell drugs to make money - is it to be rich - I don't think so. To a starry eyed youth what is more lucrative - working at McDonalds getting pimples from the grease and making just above minimun wage or spending a night selling drugs making several hundred dollars for a nights work. Yes this country is great - Great does not imply perfect. We are far from perfect and we need reform. Siobhan and the kids send you love and we hope to meet someday - maybe at the Unity walk you'll get a big hug from Aidan (as well as from the rest of us - Aidan's hugs are therapeutic). Sara is having emotional problems again as her school grades have slipped and she won;t tell us what is bothering her. She still is reading like a student of Evelyn Woods - she has read four Harry Potter books in the past week. Siobhan sends her love too. Love you! Your little "brother" Tim Saturday, November 17, 2001 04:05 PM To the daughter/son w/ the father with PD, I would first suggest getting in touch with your Dad's neurologist and see if he can suggest a nutrition specialist. I have to watch my ingestion of protein but I do not really have any special recipes. I usually wait until the evening meal to eat the majority of my protein. It would really depend on your dad's daily recommended protein allowance. I will continue to do some research and if I find any kind of recipes geared specifically for low protein diets then I will leave the links to the sites. Keep your chin up. You sound like a very devoted daughter/son. We are here if you need someone to listen. God Bless you. faith and hope, Sandy Saturday, November 17, 2001 11:16 AM My father has bee diagosed with PD and is supposed to be on a low protein diet. He is not following it very well. Does anyone have recipes that can be made and frozen? May be if i take him food already prepared he will eat it rather than let it go to waste. Saturday, November 17, 2001 06:03 AM Well, Good morning. by the time this post hits the board it should be about 13575 or around about there.No snow in So. Idaho yet ..sure cant wait for it. Just a little number crunchin for you folks. Red Cross ended up with more than 1/2 a billion dollars in less than 2 months. 9 million plus dollars a day. Just think about it, just think. Sandy, you have a great day ! shakeedave Friday, November 16, 2001 11:47 PM Hi Sandy Goodness, it's so busy here it's hard to get a word in :) not that this is ever a problem for me...right tripper? Sandy, it has been warm here still. The temperature here was about 15 celsius, or in your language about 60 degrees fahrenheit....(double it and and 30...works pretty well) The Santa Claus parade in Toronto takes place this weekend. They are supposed to have great weather for the day....This is the 92 year they have had this parade....I guess some of those people must be getting pretty old...:) When I was a kid, my parents would take me and my brother and sisters to the parade. It was quite an event. Thousands of people lining the streets of Toronto, the stores all decorated up with ornaments, hot chocolate and roasted chestnuts...yum.....More often than not it was freeeeezzzziiiinnnngggg cold, but we were always so excited it didn't matter. This is my official kickoff to the season...although it does seem a little early just yet. We are not giving gifts out this year, we have all decided to donate to charities of our choice in each other's names in lieu of gifts. Truly, I have more than I need...I am so lucky with my life, I love my house, I love my street, I love my family and friends, what else do I need? Wow, I am just seeing a domino record being broken...7 and a half million dominoes made into the roman coliseum and then knocked down...it took lots of people 8 weeks to set it up...very cool.....So, take care everybody, God Bless, Jan ps Sandy I think the chocolate is getting cold. I am going to run in and heat it up and grab a handful of marshmallows for us...I'll be back soon. Friday, November 16, 2001 04:35 PM AJ! I had a feeling it was you....no sweetheart you did not go overboard. I am like you in a lot of ways. I always want to believe the best in all situations. I will always live with a blessed hope. I have always been taken care of, my needs have been met. I am not as worried today. I also believe that anger can be a good thing too as long as it is used constructively. Today has been a different day. I thank you from my heart for stopping by and lending me your thoughts and support. There have been many days that I passed time thinking of the "meeting of the minds" and time shared with you and Greg. How is he by the way? Take care dear one. Hi ya Pauline. It is good to see you. You take care and be careful on the "dizzy" days. That granddaughter surely sounds like she loves her grandma bunches. Do you have any idea where the dizziness is coming from? It is good to hear you are being wise and "staying put" until the dizziness eases up. Thank you dear heart for the love and support and continued prayers. How is that book coming along? take care and God Bless you all! faith and hope, Sandy Friday, November 16, 2001 03:44 PM Sorry, Sandy, I didn't mean to be anonymous. I just am so used to the computer signing me in automatically. I hope I didn't go overboard, but I grew up believing the world could be a better place than it is and it is hard to unlearn that! yours truly, aj Friday, November 16, 2001 03:35 PM Hi Sandy and Parky Porch friends, Sorry I haven't posted for a while. My son-in-law had a couple of days off work, so I wasn't needed to child-sit Hayley, and then last Monday was Remembrance Day. Anyway, she's baaaack!!! Sandy, I'm so angry to hear about your drastic reduction in food stamp money. I wish I could just pop over with a home-cooked meal for you. How does beef stew and dumplings sound, with a nice loaf of fresh french bread to wipe up the gravy with? I have had a few bouts with dizzyness, but other than that I'm doing OK. I'm sort of getting used to having sore aching muscles. I'm at my best when I'm just pottering around my place or Michaela's place. I was mad last Saturday morning, as I went to a craft show and spent the whole time sitting down - I couldn't wander around and look at stuff because of balance problems. The term "dizzy broad" takes on a whole new picture where I'm concerned. Michaela cut and styled my hair yesterday, so at least my hair is still standing! lol I will keep you all in my prayers. Has anyone heard anything about Diane? I was wondering how she was doing. God bless you all. Keep fighting. Big hugs from Pauline. Thursday, November 15, 2001 11:52 PM Hello Caz and the "unsigned", Thanks so much for your kind words of support. Caz, the way that you help me the most is keeping busy....taking care of that grandchild and then coming here and telling us about it. If you knew the joy that reading about you staying busy living life with pd brings me it would give your heart a giggle. So keep up the good work!! I hope yours and Carolyn's tummies settle down. It is too late in life to be having all this morning sickness. Unsigned, the post writing sounds familiar. Thank you for the support. Take care ...tomorrow is another day. It is supposed to be a beautiful one at that. FIGHT, FIGHT, FIGHT! faith and hope, Sandy Thursday, November 15, 2001 11:27 PM Sandy, We haven't talked in oh so long, but a little bird told me to read your recent porch posts...and first I want to say that I share the anger and the fear with Nan and Brenda and others when we confront our impotence in the face of the System. That the county would take away food stamps because you receive drug assistance is absurd at its worst. Aren't food stamps supposed to help you free up money for other needed things like drugs and aren't tdrug programs so that you don't have to decide between eating and meds? But, no, they rob from Peter to pay Paul and you get left holding an empty bag in either one hand or the other. I am angry for the years you and so many others stayed in abusive relationships because of insurance benefits. (I stayed in a debilitating job for the same reason.) It isn't enough that the disease rob us of our abilities, it destroys our sense of self-protection and worth--or can. You are one of the most remarkably resilient and sanguine of those whom PD has tried to bring down...You have strengths that this disease will never be able to touch. Neither PD nor the government, with it's give-and-take, too-bad-for-the-poor-and-sick, but we-have-a-war-to-fight attitude. Talk about trying to eradicate evil! Isn't there something about trying to remove a speck from your brother's eye when you have a mote in your own somewhere in the Bible? I wonder if George Bush knows how you and millions of other citizens like you--and me--rely on the kindness of strangers and our own good fortune. We certainly can't rely on the government. I can't believe that they would not fund your housing and so you would have to move. That is so inhuman. Don't these guys have hearts? Is tossing you and others out of your homes going to buy one more bomb to drop on Afghanistan? I don't think so. Keep your chin up. Even though I am not here often, I think of you. Thank you for reminding me of why I want to fight the good fight for all of us here at PLWP. Thursday, November 15, 2001 11:17 PM Hi Carolyn. I'm on sinemet 25/100 3 x's a day. Mirapex at night for restless legs, B12, prempro, detrol, effexor, potassium( when I can get those horse pills down) This morning when I got up I had 2 tums right away and waited to eat later. I still had the urpy feeling but didn't get sick. Now after eating supper a few horus ago I have indigestion. We had round steak, baked potatoes and corn. nothing too spicy there. Sandy, sweetie, I wish there was something I could do to help you. You give so much of your heart and soul to so many of us. Please know you are in my heart and prayers. God Bless. Caz Thursday, November 15, 2001 08:33 PM Hello my porch family; I have been very under the weather this week. Nausea, chills, dizzy, you name it Ive had it this week. I dont know if this is attributed to the Zoloft titration, stomach problems, flu or the return of mother nature with a vengeance. I'm beginning to feel anemic today and believe thats why I have been so exhausted. So thats where I've been hiding this week, the bathroom and bedroom. Definitely not the kitchen. Caz email with the meds you are on. Morning sickness and horrific acidity are with me more hours than I care to say. We need to compare some notes here. Just make sure if that acidity finds its way all the way up, you rinse with water immediately and brush your teeth well or much harm will come to those pearly white. I just learned this a few months ago. My dearest Sandy, no wonder I have felt you so close by, all those brain thoughts flying between us, I just felt something wasnt right. Your at the top of my prayer list girl and may the love you have from all of us here sustain you through this trial. I cannot figure for the life of me why we have to claw and scratch for what is rightfully ours as Americans. Can you hear the creak of the rocker. My beloved grandmother who passed away when I was 6 could not speak a lick of English but I remember those arms that held grandchildren as she rocked in her kitchen and the floor softly said click clack, click clack. By the way I have a wicker rocker on my front porch and its amazing the calming effect it had on me a few days ago when I was feeling stressed. My daughter visited the other day and after we put her baby down for a nap she sat in my den rocker and rocked away as we discussed recent life events and how each of us is managing. She has Lupus, Systemic and like PD some days are lived at the mercy of the disease and with a young child those days can be quite difficult. I noticed how fast and hard she was rocking but said nothing. Then all of a sudden she said, this is good, the rocking, I feel so much better. Maybe all the doctors should replace their chairs with rockers! When I go down to Alabama its amazing the number of restaurants with porches and rockers. Southern hospitality and also I believe their grandparents knew the therapeutic benefits of those rockers. Keep the faith Sandy, I know God is carrying you now at this point in your life. Know that the porch family is a family because of you and each of us is here to support, love, cherish or just hold you or your words in our hearts . Joy, lets look for it even though at times it seems so elusive but when we find it ahh what peace God gives to those that trust in his word. My love to all of you, Carolyn Gunny Thursday, November 15, 2001 05:16 PM God Bless You Nan. Yours and Bren's support and the Porch is so appreciated. I love you both too! And have you had those two doc appointments for SS yet? Please keep me informed. I am praying for you too! faith and hope, Sandy Thursday, November 15, 2001 04:42 PM Sandy, What you posted today is very appropriate. You are a dear person and beloved friend to many of us here. And it is so important for us to communicate to each other in our times of need. That is what our PLWP community is all about. You offer your love and support here on the Parkie Porch to everyone everyday. You are an inspiration to so many of us, so let us be here for you. Dealing with Parkinson's is so difficult financially and emotionally. Brenda and I get angry when we see some of the horrific situations people are put into trying to afford their meds or just trying to keep a roof over their heads. I don't understand it. Sandy, PLWP has initiated teams related to Bevolence, Research, Resourcing etc to help fellow PLWP's with quality of life issues just like this. Please know that we love you and we will be there to help you get through this. Much Love, Nan Thursday, November 15, 2001 03:35 PM I always hesitate to post of difficult times, difficult issues. I struggle with what is appropriate or what may have an effect on the PD community's frame of mind because I do not want to harm or overly complain, or be a "fuss" budget. Please bear with me; my heart is heavy today and frankly I am mad as well. It all involves the constant changes and adjustments anticipated in a parky's life. Because I have qualified for help with medications the Medicaid department of the county had to let the Food stamp department know of this qualification. I got a letter in the mail today stating that beginning Dec. 01 my food stamp assistance will drop to $10 a month. I get help with 6 prescriptions a month. Because of other recent health issues I needed 8 prescriptions. I can not sit here and tell you that I am not thankful and blessed. I AM truly thankful. It is only a miracle of God that I manage from month to month. My needs are met. But, yes I am human. The day to day, month to month, wondering of what will need to be juggled has gotten to me today. The fact that I stayed in an abusive marriage for years for the insurance coverage enrages me. I am thankful I am safe and on my own....but I was thinking today in a way this constant worry and wonder of how the "County" will help from month to month is a form of abuse. I also received a letter yesterday stating that because of the economy the apartments that I rent from may not offer the HUD housing (Federal Assistance) next year because the Federal government may not have that money in the budget. The program may not be renewed. This of course means I will not be able to independently live. I am blessed with another whole year of living on my own. I will be able to live with my parents if needed next year. (another blessing) But all of these "what- ifs"....have just gotten under this country-girl's skin today. God said in His word that we will have trials and tribulations and the blessed hope that I have is that He will not leave me nor forsake me. I thank you PLWP for this Porch and the ability to come and lay my fears, hurts and burdens down. Love, acceptance and comfort and the presence of God is truly here. faith and hope, Sandy Wednesday, November 14, 2001 11:55 PM Caz, Before I forget ....please make sure to post after you talk to your doc about queasy stomach in the morning. I will be keeping you in my thoughts and prayers. Rest easy....love ya and hugs..sandy Wednesday, November 14, 2001 11:50 PM Well Caz!!! Gee you sure have been busy and that is wonderful to hear. It always does my heart good to hear that pwps are being busy with their hands and keeping their brains busy and baby sitting at the same time!! Isn't that multi-tasking? Wink and a grin. Thank you for dropping in and catching us up and also welcoming the new "Rockers" and chatters. You take care honey...God Bless and rest well. faith and hope, Sandy Wednesday, November 14, 2001 10:39 PM Here I am Sandy!1 Been watching grandson quite a bit as his mom is dating a very nice young man. She feels guilty leaving Brendon but I said at least you know he is in good hands. The 3 of them do things together on week ends. She is so happy and innnnnnnn love. Oh to be young again. NOT!!!! I'm doing great except for being sick in the morning and NO I am not pregnant. At first I thought it was coffee, so I gave that up but still got sick. Then I thought well I won't eat or drink anything right away in the morning. I'm still getting sick. It's a very urpy acid feeling so tomorrow I call the dr and see what she can tell me. I'm still busy sewing and crocheting. I need to get a few things mailed out to jes for er little PLWP corner, the Jitterbug. I'm also selling things to family and friends. I've found I really like appliqueing on sweatshirts and denim shirts. I've dne a few with angels and snowmen. And with the machine embroidery I've done some towels and fleece sets for kids. they say you can also put this embroidery on soap so am anxious to try that. So much sewing, so little time. LOL Nice to see a few new people posting here. Welcome!!Tis is one of the best places to really ROCK. God Bless Caz Wednesday, November 14, 2001 09:38 PM God Bless your dedication and heart Sunshine. Of course I understand your crazy schedule and having to accomodate faculty/staff...so on and so forth. Thanks so much for bringing by your beautiful ray of golden sunshine. Take care dear and God Bless you and all. faith and hope, Sandy Wednesday, November 14, 2001 09:32 PM HEY ......I have never been here before.........This is neat. You know LOL I have got to get out more. Nice to read the notes from friends I have not chatted with in, well a very long time. To see what a wonderful place this is .......and to feel the comfort of this special place.....I am glad to have stummbled in here. THANKS SANDY SUNSHINE........love and I do mean love the new site and Virtuality is first class........thanks to you Carol......... Wednesday, November 14, 2001 09:16 PM oooooooooopps Sunshine........type much lol no not me...... Wednesday, November 14, 2001 09:15 PM sorry to have cut you off like that Sandy but <I was in the crew room at the hotel in Santiago and another f¨/a wanted to use the computer in my hurry to accomodate her I cashed the computer........lol back on line now........sure wanted to finish my chat with <JM and you........see you around ....soon Susnahine Wednesday, November 14, 2001 08:11 PM Hello Rose and Tenacity, Thanks so much Tenacity for giving us the heads up on the details with the Doctors. Lets hope you do not have to wait for a year to see anyone about your surgery. Please forgive me for taking so long today to get back to your post. I have had some more health difficulties that needed to be taken care of today. I am back on the mend with additional prescrips of pennicilin and pain medicine. Hello Rose. We welcome you. You come and sit and rock with us for as long as your heart desires to. I will be looking forward to getting to know you. I will keep my eye out for ya in the chat okay? okay where is everyone else? Sylv, Diane, Kia, Caz, Carolyn, Sue, Shakeydave, Pauline....anyone I miss? step up to the plate and post away.... If you will be so kind to excuse my short post tonight. I am not feeling too good. Definitely on the mend though.....I love you all ...remember, keep up the fight...we are in this together. I am going to watch my hockey. Yes, it is hockey season. faith and hope, Sandy Wednesday, November 14, 2001 07:25 PM Hello Sandy, This is the first time posting. I have been wanting to met you. Your porch seems very peaceful. I have had PD for seven years. It is on my right side. I can get around but very slowly. I enjoy reading your posts,and I wish Tenacity the very best.Hope it goes well for her. I have tried to chat several times. I hope to chat with all of you. There is something about that rocking chair, I would love to be in it on the porch chating with you all. Hugs to you Rose Wednesday, November 14, 2001 06:59 AM Sandy, there's the rub.... there are only 3 doctors in the country that have specialized in this disorder. My neuro said that it could take up to a year and a half to get an appointment with one of these guys. He has given me a little hope though.... he said that he is personal friends with the doc from Hendersonville, N.C. and with hope, might be able to get me seen in the next few months... Well, remember my name is not Tenacity for nothing... I have a plan. Since I am a certified mental health counselor I am able to access a lot of medical sites that are unavalable to the general public. I'm going to track the new doc's hiney down, and write him a "professional" letter...tee hee... via email... on my University letterhead.... the old university has not taken away my email rights yet... hummm... that is plan number 1.... So everyone, What is for breakfast this morning? What is going on today? New jokes anyone? Geezeee, I am in a good mood! Tenacity But for the Grace of God, Go I! Tuesday, November 13, 2001 10:33 PM Tenacity, You are welcome for the support. You did not post your date with the consult with the surgeon. I am hoping for the best for you and Robert! 80 percent recovery....this is great....please let us know the details of surgery. Tenacity does win! Go girl! How is Robert? faith and hope, Sandy Tuesday, November 13, 2001 07:39 PM What a journey this has been and what a path that has been laid out before me! Thank ya'll for being such an inspiration for me and for holding me up when I was falling down. I love you guy's and gal's! I am 39 years old. Dx with PD in July 99. Started using a cane for walking Dec. 28, 1999. Refused to accept dx so I established primary neurological care at Baylor medical school in Houston, Tx. in Feb. 2000. Dx with Multiple Systems Atrophy in Sept. 2000 at Baylor. Coined the term “observant denial” to describe how I felt about this disease and whole heartedly refused the Dx and went to the University of Michigan Medical Center for a second, second opinion only to be told that I had a mental problem and not MSA by a movement disorder demigod there and told that I should go off my meds and see a psychiatrist for deep rooted mental problems later that month… Sept 2000. Joined PLWP in December 2000 and started looking for answers to what was going on with my non-corporative body. Almost died from going off of meds and seeing a psychiatrist in January of 2001. (Figures, huh). Started using a walker on my birthday January 26, 2001. Got back on my feet and using a cane again in May 2001. Got married in June 2001. Was asked to participate in a research study at the NINDS in Bethesda, MD. In July 2001. After they received my medical records, they call and recanted their offer because of my MSA in August 2001. Turned down for a DBS in August 2001 and received a heartfelt letter of regret from the chief of neurological surgery at the University of San Francisco Medical Center in August 2001. It stated that there was no surgical treatment for the type of neurological disorder that I had. Retired on disability and moved to Charlotte, N.C. in October 2001. Came to terms and finally accepted the dx of MSA in October of 2001 and started hangin out here at Sandy's Porch that same month. Found a new neurologist to manage my care Nov.1… For the first time, more than a MRI was done. I was put through a battery of blood tests…. Only the sedimentation rate was not normal. Had a MRI of the cervical spine and brain, had a cerebral blood flow study conducted and today I had a mammogram in the morning and a nerve conduction test in the afternoon. TENACITY WINS!!! The neuro found a Type 1 Chiari malformation and the cerebellum elongated and descending upon the brain stem. All of the other doctors missed this. ALL symptoms mimic PD. Today, I was referred to a specialist for surgery. The doctor still maintains the dx of MSA but states that this could be due to the pressure from the elongation of the cerebellum. What this means in English is that after surgery, I will know how much damage was done from not being dx sooner (I am 5 years into this from onset of symptoms). The statistics show an 8% chance for total recovery, 60% chance for marked improvement, 12% chance of moderate improvement and a 20% chance for staying the same or the surgery really messing things up. What this means is that I have an 80% chance of regaining my quality of life. The journey is not over but what this whole experience has shown me is that 1. God truly answers prayers 2. There is Always hope 3. You are not crazy for having weird symptoms 4. Don’t give up the fight. 5. Keep educating yourself 6. Doctor shopping is not a bad thing. LOL! Thank each and everyone of you for your continued support! Tenacity But for the Grace of God, Go I!!! Tuesday, November 13, 2001
06:20 PM
Good evening everyone,
Stayed out in the bright sun today, that alone lifts the spirits. Went shopping
and had lunch with favorite little guy (grandson Jake of course) and daughter
Kelley at where else but his favorite Taco Bell.
Deb remember these words
Yesterday is dried concrete
Today it is mixed, formed and being cured
Tomorrow is fresh cement
Do not worry about the yesterdays. In years to come may you recall these few
sentences of wisdom departed to you by an old Italian family. (Who owned a bakery
not a cement company) lol.
Glad to hear things are looking up for you.
Sandy, I know you are with me always as I sit here at my pc surrounded by your
parkie encourager, the Angel card and plaque, your spirit is definitely in the room
I spend so much time in. What a blessing you are for all of us that God has
directed our hands to this web site.
Since starting the Zoloft the appetite is down, maybe that will be a good thing.
My luck I'll add another 10 lbs. Oh well, Santas fill in at the mall.
Take care my friends.
Joy be with you every moment of the day and night! Mine (joy) was just on a
temporary hiatus, found it again (today). Guess thats what titrating does some
times but I know this family understands and that in itself is comfort enough for
me. LOVE YOU ALL
Gunny
Tuesday, November 13, 2001 08:20 AM Good Morning Deb, No apology necessary. We are in no position to judge. Sometimes it helps just to have someone listen. Deborah, I know you have a lot on your mind today, both you and Robert. It is my prayer that you be strengthened to get through today, and have the peace that you are meant to have. Please let us know how things go. faith and hope, Sandy Tuesday, November 13, 2001 07:43 AM Hi Folks, Felt the need for an apology here to everyone on the parkie porch for airing my personal fight with my mother for all to see. At the time, I thought it was a good idea. Now, I just feel humiliated that I ever did such a thing. Sometimes, the waking up from the fog is not so pleasent. Once again, I ask you to please put my lack of, (well, you fill in the blank), common sense, behind us. Enough crying over spilt milk... now it's the time to put one foot in front of the other and do good for more than myself. Thanks Sandy, Carolyn, Carol, Shakeedave, and the rest of you for holding the torch while mine was in la la land. I do appreciate each of you. Deborah aka Tenacity Tuesday, November 13, 2001 06:50 AM Carolyn, No I do not think you have rocked off of your "rocker". If anything the Zoloft may be releasing some of the depression thus allowing you to think about more than the pd. I will ask you to draw strength from your faith Carolyn. I hear and pick up on the frustration that you are experiencing from your family not realizing you are mature and you do have a brain that is capable of thinking and making decisions. Hang in there sweetie. You know where I am if you need me. I finally got some good sleep. I am thinking about going back to bed and getting some more. Tenacity, hang in there. We will be waiting for word from you or Robert as to how things unfold today. We will be keeping you in our thoughts and prayers. We ALL are in this fight together. One foot in front of the other. Shuffling off to bed....maybe a few more winks and sweet dreams are in store. faith and hope, Sandy Tuesday, November 13, 2001 05:15 AM When does the night come? I saw it get dark outside but my body refused to participate in slumber. Poor Robert, he finally got up at 1:45 and has hung in there with my middle of the night meanderings. Carolyn, hang in there! We are all in this together. To answer your question, I really don’t know why our caregivers stick with us. But if the shoe was reversed, I would stick in there with them so I guess that is the best answer that I can come up with at this time. Today is d-day. Mammogram at 9:45, nerve-conduction test and neuro visit at 3:00 PM. I got the results back from the blood work and the c-spine and brain mri. Yep, I do have a type 1 Chairi malformation but guess what? It is 1mm to short for operation and is not the total “cause” of my problem. The dx of MSA stands… unless the doc can pull a rabbit out of a hat today. Got a call last night at bedtime, (another reason not to sleep), my 93 year old grandmother is in the hospital in her final days and I can’t be there. The feeling is horrible though I did appease some of my guilt by having a young fellow that found me via the internet (he is 22) agree to print out a picture of my house and go by the hospital and visit her today. I have been chatting with Ryan for a couple of months now and feel comfortable with him going to the hospital in my stead. My grandmother has wanted to see what my home looks like. Funny the things that you think you will regret not having done when time is running out. Oh well. Sleep depravation and sheer pessimism… seems to be catching these days. I’ll get over myself soon. I promise. Hope today is beautiful. Tenacity Tuesday, November 13, 2001 03:41 AM Dearest ones, Looking at the rocker above this box makes me think maybe I'm off my rocker at this time of night for being up. But so be it, fruitcake by any othr name is still a fruitcake right. And I am the original recipe. Bella my friend its been a long time since we chatted. May angels uplift you at this time of need. Does the world seem like its spinning out of control these days with all the bad things happening everywhere and that we are just observers in a sureal play called Life. Devastation, madness and hatred seem to permeate the air we breathe. Even the next steps in my life seem so uncertain these days. Maybe its the Xoloft talking but these are my rambling thoughts for now. How and why do our caregivers stay. Why can't children and friends understand when you have to say no. Why do people feel they have to give you advice when you know your own body and are an adult with a brain that is still functional. Why do some people feel they need to speak for me when my voice is still very good. Will I ever be able to wear those high heels again and ride a bicycle with Diane. By now you probably think the Zoloft has left me quite inbalanced but truly I am thinking quite clearly. Tune in tomorrow for more middle of the night ramblings. Grin. I hope Joy is in your heart tonight, I'm still searching Carolyn Tuesday, November 13, 2001 12:12 AM Good to see you Jan. Lets stretch out and lounge in our rocking chair gliders and either have coffee or hot chocolate and chat. Is it getting cold up the north of the border? Any sign of snow? It is after 12 here I am going to call it a night. I hope you sleep and rest well with sweet dreams. faith and hope, Sandy Monday, November 12, 2001 06:45 PM Oh my goodness, another terrifying day in New York. I am so glad this site is here, it is refreshing to stretch out in the chair and see that the rest of the world is relatively sane and safe. Bella, you sound like you know what you are doing. I am sure you can give those medics a run for their money. How are things going down under? I met a girl from Sydney a few weeks ago, she was visiting friends in New York and drove up to Toronto to attend a Halloween party with other friends. Nice person....as are most of you Ozzies :)....The night has fallen, the stars are bright, the air is cold and brisk, winter is defintely lurking around the corner...think I'll go and pour myself another coffee. I'll be back. take care all, to be continued aka Jan Monday, November 12, 2001 09:20 AM Bella....my Queen, Hello Love! You may come here and vent anytime you wish. Honey, you and yours have had your share of things to deal with. I believe it is called life. More appropriately it could be called a merry-go-round from hades sometimes. I am glad the Encourager booklet arrived and is doing its job. I figured that customs would get their paw prints on it but I am also glad it arrived in one piece. You two take care of one another and know that you both are thought of and prayed for sweetie. Keep up all the hard work. We are in this fight together, for the duration!! God bless the both of you!! faith and hope, Sandy Monday, November 12, 2001 08:36 AM Monday, November 12, 2001 08:25 AM Hello Dear One..tis I the woman with "attitude" from downunder. One hour ago, I administered a pain killing injection to my beloved, who is in a fair amount of pain (read agony), after having a rotating cuff repair of his long painful shoulder, which necessitated (amongst other things) a couple of days in ICU, after the meds went all haywire. He has been home now one week. However, since then, he has fallen on the self same shoulder twice, and has firstly torn the inside sutures, and more recently done further damage (to be scanned and X=rayed in 38 hrs), and he is in constant pain. Meanwhile, having administered the morph (I know, but I have done it under medical instructions when necessary for the last 18 years of nursing him, through being shot by a shot gun in the gut at point blank range (no it was'nt me, a faulty /broken gun discharged on a cruise ship in the greek Islands), an acute peritonitis, two anaestomosises, at least twenty kinked bowel/gut obstruction incidents, pancreatis, cholesystectomy (empyema), a knee replacement, a bi lateral pallidotomy..and the list goes on!) For much of this time, the PD dx'ed within weeks of the shotting incident has taken second stage, to the other medical complications he has to contend with. Suffice to say, as a veterinarians wife, I give a mean injection when necessary, and necessary it is this night in Oz. ANYWAY: We were lying on the bed, waiting for it to kick in (it still has'nt lol), and youngest son arrives home with the mail! A packet from none other than Sandy..our Sandy, St. Sandy..that's you lady!! (Australian customs had opened and inspected said item, and it obviously passed muster, hope they read some of the quotations too!) The timing could not have been more perfect! I was humbled by the work you obviously put into it, and we read together some of those wonderful "bon mots"!! You are inspirational! Thank you! I shall treasure it always! (and I thought I was pecient!!) Thank you for letting me vent. Thank you for your thoughtful gift. Thank you for being YOU! Love and hope, from a fellow PLWP Bella Sunday, November 11, 2001 09:40 PM Howdy Sue!! Good to see you. I am so glad you are feeling better. My experience with Mirapex was not a good one. It is good to hear that Mirapex is so beneficial to you. I believe all of us are fortunate to have the benefits of the different availability of drugs so when one combination does not work there is a hope of a different one to try. I hope you will feel like posting and letting us know how you are doing. We have missed you. I hope you have a good night's rest. faith and hope, Sandy Sunday, November 11, 2001 08:54 PM Hi, Porch people! How's the weather? I am finally back on Mirapex, and I will fight anyone who tries to take it away from me again. What a wild journey I have had with doctors these last few weeks. I guess I just needed to learn (AGAIN) to listen to my instincts and trust them. My daughter is getting ready to go to California to march in the Hollywood Christmas Parade. It is very scary to let her go 2000 miles away from me in this day and time, but she has looked forward to this for a year, and I am not going to let some foolish people force us to live like scared rabbits. I have several good friends and relatives in the LA area, so if something bad should happen, I know they will get to her for me. But remember her in your prayers, anyway! Sandy, how are you? I have not been able to get to the porch for a while, and I missed you. I think your benediction is a great way to get going in the morning, so I try to look in the mornings when I am getting ready. Hope this finds you happy! Love Sue Sunday, November 11, 2001 07:00 PM Don't worry Carolyn about the chat. Yes friends do understand. I just got back from my parents'. I had Sunday supper with them. It was so delicious. There is nothin' like Mama's cookin'. I hope everyone has had a nice and blessed day. faith and hope, Sandy Sunday, November 11, 2001 01:43 PM TO EVERYONE; I FEEL SOOOOOOOO GUILTY. Yesterday I babysat my dear grandson with my husband and we were having so much fun with him that time just flew. All of a sudden my husband said, its 8:25. I missed the chat I called. Embarassed, foot in mouth, oh well....friends understand ....I hope... Laura I just started on Zoloft too. I pray there is a drug out there for you too that will help. Our bodies are so different in response to these meds. Codeine wires me up like an atomic bomb but puts my kids to sleep. Go figure. My energizer batteries must be in backwards. Caz keep in touch girl. I've been sewing a lot too. Diane I spotted you online for a few minutes, I hope that is a good sign. Sylvia where ya been girlfriend, I miss our chats and your wisdom David thanks for the inspiration Tenacity may your dreams come true Paul I miss you girl, you're so special Shakeydave, I'm praying for all the best for you and you are a class act New members, please post so we get to know you. And everyone else, have a blessed Sunday. Joy envelope you in your angel's arms. Love to all! Carolyn Sunday, November 11, 2001 01:41 PM Prayers are going up Laura. Please let us know how you are doing. faith and hope, Sandy Sunday, November 11, 2001 12:08 PM Need prayers this morning. The neuro has decided to try me on zoloft and I am having extreme problems with it. My pd drugs are not working well and I am going to quit the zoloft. But, need the Lords hand on me as my body and brain work through this... thanks.. Laura Sunday, November 11, 2001 09:49 AM Today is Veteran's Day....as a daughter, granddaughter of Veterans, please remember those who have fought and are fighting by remembering them in prayer today. Quietly reflecting today with thanksgiving in the very essence of my being for my freedom. Thank you God, and every service man, and woman that has been and is now such an important part of that freedom. God bless America. faith and hope, Sandy Sunday, November 11, 2001 07:05 AM Good morning all, this is my first…She made me do it! When she said I had sticky corn muffins…WELL. I made the mix and poured in the tins….she was to help and oil the pan. Now you know why they stuck!!!! And yes, Little TENACITY is full of her self this morning... She even has me going to church….the roof will fall in, but she said she has the power…we’ll see…… We only have one more day and a wake up to see the Doctor and get those results. We need your prayers’s..so bring them on…. Just wanted to clean up all she wrote…By the way, Lobster is much better on the grill than in boiling water….hahaha.. Some idiot at the store told me to bring the water to a rolling boil and drop them in. When they turn red, they are ready….they lied. Take care and go have a wonderful day…. TENACITY’S ROBERT Sunday, November 11, 2001 06:46 AM Good Morning Porch Family, I feel alive with energy this morning. I pray that it will last at least through church services. Robert and I are in our usual places, me at the computer nestled between two large bay windows and him on the laptop on the kitchen table just a few feet away. He plays on the laptop until his morning paper arrives and curses the fact that the computer never seems to work for anyone but me… tee hee… I must share a funny with you. Last night Robert decided to cook a fancy lobster dinner… Oh boy…. he burned the new potatoes, undercooked the lobster, put a glass bowl on a burner only to have it blow up, trashed the kitchen and had the corn muffins stick to the pan. Needless to say, I truly love my new husband. I am so grateful to have all of you. Have a blessed day, Tenacity Sunday, November 11, 2001 02:25 AM Pwnkle keep an eye open for that shooting star and keep the wish close to your heart until the wish comes true. Many nights like tonight, my memories take me back to the Meeting of the Minds and all the great memories we made. Miss you dear friend. faith and hope, Sandy Sunday, November 11, 2001 01:32 AM Good night porch folks, Sandy I hope you're sleeping! I'll just sit here on the railing for awhile and look at the stars. (p) Saturday, November 10, 2001 11:15 PM Good to see you Caz!! It really does my heart good that you choose to keep your hands and brain busy. Sewing keeps your hands busy and crocheting too. Also, counting our stitches and steps in sewing and crocheting exercises our brain. I hope you rest well too Caz. Love you girl and God Bless you honey. faith and hope, Sandy Saturday, November 10, 2001 10:42 PM OK OK This is lurker Caz lol I've been glued to my sewing chair and occasionally when glue dries and cracks I get up and move to computer chair to read the posts here or I sit in recliner and do a bit of crocheting. Today I had breakfast with 2 of my sisters and then the 3 of us ended up at same craft store. I have so many things I want to make. Hope everyone has a good nights sleep. God Bless Caz Saturday, November 10, 2001 10:19 PM Carolyn, Dear sweet Carolyn. I must apologize for missing the Porch chat. Many of you know that I have been battling insomnia lately. Well, you guessed it....I was sleeping through the chat. I do apologize though. Carolyn, you are really putting forth a great effort in hopes of getting people together for fellowship. I will make it up to you somehow. I hope you are well dear one. I am off to take night time meds. I pray we will all sleep peacefully tonight. God bless you all and our country. Keep praying for the leadership of the country and our troops. I love you all... faith and hope, Sandy PS I see you Jan aka carlcool. Thank you so much for the kind thoughts. How have you been by the way? Bruce, are you doing any better? Luvstosew? Kia, Caz, Sylvia,and all of you lurkers... Pwnkle the Porch is fine honey.....it is beautiful. The links to the chat are fabulous. Saturday, November 10, 2001 06:33 PM Sandy, try it now and let me know if you still have to scroll over to read it (p) |
Saturday, November 10, 2001
06:06 PM
Hi Sandy, what size is your computer screen? I want to know because I intend to
reformat so the porch will fill any size screen 100% , this info will help (p)
Saturday, November 10, 2001
03:01 PM
Hello Everyone;
How about a date in the chat room of Sandy's Parkie Porch tonight, 8:00 p.m. est.
Be there in your most comfy outfit, drink, and favorite munchie. Links are on home
page of PLWP and the porch post area. See you all later.
Love,
Carolyn (gunny)
Saturday, November 10, 2001
02:52 PM
Dear Friends;
I wanted to share an email that was sent to me the other day. I found it to be a
real reflection stimulator.
An article in National Geographic several years ago provided a penetrating
picture of God's wings.
After a forest fire in Yellowstone National Park, forest rangers began their
trek up a mountain to assess the inferno's damage. One ranger found a bird
literally petrified in ashes, perched statuesquely on the ground at the base of a
tree.
Somewhat sickened by the eerie sight, he knocked over the bird with a stick.
When he gently struck it, three tiny chicks scurried from under their dead mother's
wings. The loving mother, keenly aware of impending disaster, had carried her
offspring to the base of the tree and had gathered them under her wings,
instinctively knowing that the toxic smoke would rise. She could have flown to
safety but had refused to abandon her babies. Then the blaze had arrived and the
heat had scorched her small body, the mother had remained steadfast.
Because she had been willing to die, those under the cover of her wings would
live.
"He will cover you with his feathers, and under his wings you will find
refuge." (Psalm 91:4)
Doesnt this just give you a warm and loving sense of security on a cold and dreary
day.
Joy to you today!
Carolyn G
Saturday, November 10, 2001
02:40 PM
Sandy, Congratulations on this site doing such a great job. You have obviously hit a
nerve with us plwp'ers....I enjoy reading the posts and keeping in touch with
everybody through their letters and stories....I know that Thanksgiving is arriving
soon and so I wish to offer my best wishes to all our American friends...There is
much to be thankful for in these awful times. Bless all of you and your families,
good health, good cheer and good fortune to all of you. Thanks for the chair Sandy,
I suspect I will be back again soon....take care, Jan aka carlcool aka to be
continued...
Saturday, November 10, 2001
02:20 PM
Well hello there Bruce!
No this is not Sandy of the DBS. But I post to MGH. I live in North Carolina. I
love the south. The southern winters are not as difficult on the pd.
I am really picking up on your frustration you are experiencing with your lack of
quality care. My heart goes out to you and I am frustrated with you. I only wish
that I had some answers or suggestions for you. I believe when our fellow pders
are suffering and the solutions to the difficulties are lacking that is when my
heart breaks the most and I get aggravated and yes mad as the dickens. I have no
experience with DBS. I do know that your current neurologist should be given the
same treatment. You deserve better Bruce. My meds are going off. I shall return.
Anyone reading...any suggestions are welcome!
faith and hope,
Sandy
Saturday, November 10, 2001
12:57 PM
Hi Sandy, I have never posted here before, so I don't know what I am doing. I
didn't realize you were so young. I wanted you to now I appreciated your call. I am
in the angry stage regarding my neurologist. He is going to get a lecture the next
time I seem. Their was no reason for him to switch one of my drugs, because they
are in the same class of drugs.
I had started to think the PD was progressing faster and I could have an accident
driving to town.
So I might be looking for a neu
