A couple of things we've done to make the website more user friendly. (1) When you go to the frontpage of the website, then click on a link within that page, the frontpage remains up. It makes it easier to find your way back to us!! LOL (2) We've done the exact same thing to the Communications Center. You can reduce it and keep it on your status bar, you can close it when you are finished with it or leave as is ... your choice. Oh yes, a third thing, there is a drop down box to the left of the frontpage and the bottom right of the Communications Center. This is a complete list of pages within PLWP Website.>>>>>We also would like to apologize for the trouble we are having in our chatroom. It's out of our realm of control. Please bear with us and Yahoo.>>>Thanks
DOES GOOGLE HAVE CHAT ROOMS?
BREN-- GO TO THE CHAT ROOM NOW-----YOU WILL FIND OUT WHY WE CANOT GET ON. THERE IS A NUMBER TO CONTACT
Apparently Yahoo is having major issues. I've concluded that it's fruitless for any of us to try to work around the problem...Yahoo will get it fixed themselves. Just keep checking and trying to get in from time to time. Thanks...
I have tried everything I can think of and nothing works so I guess I will give up for now. I hope that tomorrow is a better day. I hope we all get to chat again soon.
I dont know what the problem with YAHOO is at this time but I cant get into MESSANGER and when I tried to access my GROUP LIST all my PARKINSONS GROUPS were removed from the list. I have never had this much trouble before and I am going through YAHOO. I cant get into CHAT either.
It is my opinion that the problem being experienced in our Yahoo chatroom is a conflict with AOL. Everyone thusfar, that I know of who has had problems getting into and using the chatroom are on AOL.>>>>> We think we have an back up plan for those who do have a problem. Using Yahoo Messenger, if you have already added the plwp2 chatroom to your favorite chatrooms, just click on it under menu option Tools and then Yahoo Chat. If you have not set it up, then go to the same location, and instead of selecting Favorites, select "Join User in Chat". You can then type in user name kenneth_delabre2001 or btucma2000. That should bring you into the chat. >>>>> Thank you for your patience, Bren
The following message is regarding the Chatroom on plwp2 Group Yahoo. www.groups.yahoo.com/group/plwp2
Today at 230PMEST (130PMCST) I am going to attempt to help you get around the website and PLWP2 Yahoo Group a little better. We have started two ongoing guides for the membership.>>>>> One is PLWP FAQ, (www.plwp.org/faq_sheet.htm) which is your average example of Frequently Asked Questions. Thinking this would be an easy task since we've now had three years of "questions", Nan and I thought we'd have it complete in short order. Well, we were wrong!! LOL Not only does memory allude us occasionally, but everyday it seems we have a new and different question. That's why your input is vital! The other guide is simply "How To" (www.plwp.org/how_to.htm) This guide is definitely going to be under construction for quite a while, but we think it will be worth it. >>>>> Our main topic of discussion will be the PLWP Communication Center (www.plwp.org/communication.htm) and how it can help you. BUT, HOWEVER, EVEN THOUGH...just attending should be beneficial if even in a small way, you're participation is necessary. Before the session, please go to both PLWP FAQ and the PLWP How To and look them over. If you want, you can print them. Keep in mind they're both changing almost daily. See if you have any questions to ask either during (if time allows) or after the session. More importantly, go to the Communication Center, have it up in a different screen than the chatroom, so you can toggle back and forth. (You can toggle between windows by holding down your Alt key while pressing on the Tab key.)>>>>> Here's the way I hope the session goes. In my "pre-disability" life, part of my job was teaching computer programs. So if I sound a little "dictatorial", it's because I'm an old sailor who has been around the ports a couple of times! LOL Ideally everyone will be able to "Hear". I will be the only one using Voice. When I ask for questions, please type them. If you have technical problems, we cannot deal with them during the session. I, Ken or Terry will be glad to help you later. Just post your need either on the Fridge or on the Yahoo Messages. If you have questions or comments on any of the content, please feel free to post them in either of these two locations.>>>> I would like to clarify why it seems you see me more than Nan. Everything I do, she has her say in and vice versa. We're kinda like "joined at the hip". It's just that I'm basically the technical side and she's more the administrative side. In other words, I'm the geek and she's the diplomat! I do most of my talking to machines and she talks to human beings! LOL (She'll love that scenario!) >>>>> We would like to thank Ken and Michael for overseeing our two chat sessions, Monday thru Friday. They are doing a wonderful job! We need more chatroom coverage though. If you can spare even one hour a week, let us know...we'll work with you.>>>>> So for Nan and Bren, see you this afternoon...together we make a difference,>>>>>> Bren
JUST SAW KENS REPORT--THE SAME WAS HAPPENING TO ME.WILL CHECK BACK TONIGHT
WHAT HAPPENED TO YHE AFTERNOON CHAT ROOM??
Just checking to see that this is working. I'll be cleaning out the fridge while i wait. It reminds me of mine...a science experiment growing inside. LOL LOL
URGENT ADVOCACY NEEDS...go to www.plwp.org and following the flashing blue light!
I've got to put my two cents in about the chat sessions...both the morning and the afternoon. Michael, I'm sorry I didn't make the 8AM one, it's hard for me to get there at that time. I promise you that if I'm awake though, I'll be there. I heard that you had several there this morning and some of them were there even earlier than 8AM. Good job guy...keep up the good work. >>>I was able to make the afternoon chat, Ken's first. What a great turn out. Let's see, there was Gary from Canada, Ken from IL, Mark from Switzerland, Renee from Indiana I think, Dan from NC, Sylvia from MD, Diane from AZ and then me from the hills of Tennessee. I hope I didn't miss anyone. And this was the first day. >>>>>Nan and I couldn't be more pleased with all of your efforts. There are people to help, awareness to spread, and a disease to beat...together we make a difference!
I truly enjoyed hosting ths afternoons chat session. All of you mad it so easy. When it comes to discussing Parkinson's topicxs. Ithink we need to have 3 to choose from. I want these chat sessions to be interactive. Once in a while I may step forward and say next session we will be discussing___________. 95% of the time it will be a group decision. Hugs to all. Ken Mr. Hugs
Hey everyone, I am looking forward to startng the afternoon chat sessions today at 2:30 PM Eastern time. We will have some fun and we will have some serious discussions. I will also work with Brenda and Nan to see if we can get some special guests to come.
Brenda and Nan, I started on the clinical study med yesterday, and with how the study group is broken down, I know that I am at least in the group that received at least the 20 mg of the medication and 40 mg of the placebo at minimum.
MICHAEL--SOME THING IS BUSTED. I COULD HEAR YOU BEFORE I GOT ON LINE. AFTER I GOT TO THE CHAT LINE--NOTHING. WILL TRY LATER.
BREN--IF YOU ARE GOING TO STAY UP ALL NIGHT I WILL CHECK THE CHAT LINE EVERY 15 OR 20 MINUTES TO SEE IF YOU ARE THERE. MAYBE WE WILL CATCH A FEW NIGHT OWLS. I HAVE TO WRITE A PRESS RELEASE TONIGHT AND A FEW OTHER THINGS SO I WILL BE AROUND. WE MAY BE ABLE TO USE VOICE.THIS MORNING WE WERE ON VOICE FOR THE FULL HOUR.
Hello everyone, I am curious how many people would be interested in having a Monday through Frday 1:30 PM chat session? I have spoken with Brenda nad am thinking about hosting a chatsession at that time. t will stat out casual, then as we get into knowing each other there will be main topics for discussion. Between yesterday and today I have had pretty good days. I got my first ceramic order shipped off. I am shipping another box to Joan Blessington-Snyder for her store the Jitterbug. With these,I was approved for a clinical study at Northwestern in CHicago, IL. I showed the Dr. one of the cards with a couple pictures of items that I have done. She wanted to see a comleted piece. I brought one of the Mare & Colt that I gave my mother for her Birthday. She was so impressed, especially with the amount of dyskinesia that I have how well the finer details came out. SHe said that they put out a newletter, and that they would type something up have me proof read it and put it in the newsletter. Please let me know what you think about the M - F 1:30 Chat Sessions.
BREN--I HAVE TAKEN THE GENERIC FOR SINEMET FOR 3 OR 4 YEARS, I WAS TAKING 25/250 BUT WITHIN THE PAST 30 DAYS I DROPPED COMTAN AND STARTED 50/200. THREE PER DAY. SO FAR SO GOOD, IN FACT I INSIST ON GENERIC ANY TIME IT IS AVAILABLE. MY DOCTOR APPROVES.I TAKE TEN DRUGS AND ALL BUT TWO ARE GENERIC
Looks like I'm talkin to myself here but I know people are reading...you just ain't got nuthin to say...and that's ok. >>>>>>>Well, it's almost 4AM and I'm finally getting sleepy. But I wanted to share something with you. When refilling my scripts today, the Pharmacy "could not find" Sinemet 25/250 anywhere in Knoxville. Now Knoxville, Tennessee a small version of Atlanta...not a small town by any means. The Pharmacist told my husband that "they just aren't making that much anymore BUT, he had PLENTY of generic Sinemet." Well, I'm not happy BUT I'm gonna give it a try. I know I've heard several people say they have problems with the generic...I would appreciate any of you sharing your experience. I'll let you know how I do on it...I hope there's no change. Well nite all...since it's so late I won't make the 8AM chat...hope you do!
B. Myers>>>I tried to respond to your survey response but the email address you gave us didn't work. Check this out...April 27 >>>http://www.plwp.org/over_the_miles.htm >>> Later, Bren
Where is everyone? Snowed in and under!?! Well, we need you to complete yet another survey! This one has to do with attending the Parkinson's Unity Walk as a group. It's at the top of the front page of the website. Just click HOME (upper right) for a quick switch.>>>>DON'T FORGET, Morning Chat Session, Monday thru Friday at 8AMEST!
The chatroom sessions hosted by Michael Koontz yesterday and today were quite successful. Michael is volunteering to host the 8AM chatroom sessions Monday thru Friday. This is great news. So come on in and wake up with your fellow PLWPs! >>>>We need an afternoon and evening session as well and perhaps even a nightowl session. Any volunteers?
NEW...NEW...NEW...On the front page of the website, in the menu on the left, is a link to PLWP FAQs. Check it out!
i had the pleasure of speaking with the charming donna dorros the other day and would like to remind everyone that it is time to start thinking about nominating someone for this year's dorros award. last year, if you remember, no one was nominated and the award (plus the $5,000 in prize money) went by the wayside. if anyone out there does not know about Sidney Dorros and the legacy he left behind, it might just be a good time to check out the archives and the PDF website to aquaint yourself with this remarkable man as his wife continues to do his good work. if you have an idea for a nomination for someone who has excelled at outstanding commitment and achievement to the parkinson's support group community, this is where to go to find out how to get the ball rolling. good luck one and all. http://www.parkinson.org/dorrosaward-2003.htm
Michael, it's 11AM and I just got up. I'm so sorry I didn't make your chat session. I promise to get to bed earlier tonight so I'll wake up for your Tuesday 8AMsession. Let us know how today's went? Either here or on the Fridge. Remember guys, we're trying to revitalize the chatroom/member communication and it's going to take time, patience and effort. If you want to chat and never find anyone there, then help us out by choosing a time best for you and host a chat yourself. Post it here, on the Fridge and on the Calendar. Help us get the flow of communication going again. Together we can do this. BTW, checkout the new FAQ Database...frequently asked questions about PLWP. Click Database from menu options on the left side of the page. Together we make a difference.
Don't forget everyone, there's a Chat Session this morning (Monday) and another one tomorrow morning at 8AMEST in the PLWP Yahoo Chatroom. We had a good time at the Sunday morning chat...mostly new members!!! Sylvia, hope you had a good time on your cruise. I'm sorry I missed you and Terry but there will be many more. Chosh, I'm glad your sleeping better but I did miss you. When I stopped taking Mirapex, I was a new person too. But folks just remember, everyone reacts differently to drugs. Maureen, I love the joke...it could be a blond joke! LOL >>>Nite y'all!
Hi gang; here's something that might give you a chuckle or two: A distraught patient phoned her doctor's office. "Is it true," the woman wanted to know, "that the medication you prescribed has to be taken for the rest of my life?" "Yes, I'm afraid so," the doctor told her. There was a moment of silence before the woman continued... "I'm wondering, the, just how serious is my condition? This prescription is marked "NO REFILLS!"
Sorry I missed your chat, Brenda. In my mirapex days I would have lived half my day by 7am, but now that the agonist has been eliminated from my life, I am really sleeping in. Off mirapex, my lifestyle is quite different than on it. Has any one else had this experience? If so, email me at chris.hall@sympatico.ca
Bren, tried to be there on time this AM but must have just missed you. Had a brief chat with Dan and Terry Bowers. Very brief before I had to leave for a family emergency. I'm usually up in time for something like the chat. Will try again next time.
It's 7:30AM (Saturday morning) and we're having a nice chat in the chatroom. If you're around, come on in. We'll be there for at least 30 more minutes. Donna Zeimer just left...she's a new member. Kenneth and Dan are still in there with me. SO COME ON IN!!!
Brenda and Nan you for the wordss of encouragement. I have my first order ready to ship. I have an order for a lighthouse from a fellow Parkie. I have a customer from where I work part-time that is interested in a light house. In a month or two, I will have an order for a tiger, a Teddy Bear Bank. Those are two seperate orders. Anoher fellow Parkie is planning in a few months to order a piece village set to set up under his Christmas Tree for part of his decorations. I sent a packge of 5 figurines to Carol Walton at The Parkinsons Alliance that they will be selling in a silent auction on March 23, 2003, along with a fashion show which they are having. If anyone is interested you can lace an order swith me by emailing me at krdelabre@aol.com, krdelabre@hotmil.com or at kenneth_delabre2001@yaho.com. These funds are being used if sold at Joan Blessington-Snyder's Shop, Jitterbug, for PLWP.org functions, or to The Parkinsons Allliance if placed through me. Again, my homepage is as listed below: http://hometown.aol.com/krdelabre/myhomepage/profile.html
BREN--CHECK THE CHAT LINE--IT SAYS VOICE NOT AVAILABLE. ???? AS FOR YOUR POSTING -- PLEASE PLEASE KEEP IT UP--I LOOK FORWARD TO YOUR NOTES AND IN TIME IT WILL DRAW MORE PEOPLE. WILL TRY TO BE THERE TOMORROW MORNING. HAVE A GOOD DAY
Let's give it a try! I'm sure most of you attend church, but at 7AM...well come by and have a cup of coffee with us. I can't absolutely promise to be here, sometimes I sleep really late! LOL But I'll do my darndest. >>>>>> At some point, please take just a minute to familiarize yourself with the Yahoo Group site here at PLWP2. (You're wondering why PLWP "2"...well suffice it to say, I goofed some time ago with the PLWP Group. Nobody but me gets the credit for that goof! LOL) Anyway, besides the chat room, the other main function we are going to use is the Calendar. I've already posted the chat for tomorrow, take a look. You can (and we want you to)add chat sessions of your own, fundraisers you're promoting, special PD get togethers...whatever. Try it, you may like it.
It's the wee hours of the morning and it's lonesome in front of this glaring screen. I read the messages here and see I've totally monopolized the Fridge. Just like when I was a kid...I remember Mom yelling at me to "Get out of the fridgadairy", that's what she called it back then. I tell myself now, that I come to the Fridge to encourage others to come here. Sometimes that's true, but honestly, most of the time....well, I'm just not that unselfish! LOL When my heart is full...or when something good has happened...or maybe just when my feet hurt (lol) there are times I need to share with those who really understand the Parkinson's side of my life. It doesn't mean I'm blue or sad or even lonely...I just need to know YOU ARE THERE! >>>>With all this said, well, I just want to say GOOD MORNING to this part of my world! A very important part of my world!.....
Happy Valentines Day to Everyone! Dan, Chosh and Gloria> Thanks for your comments. Bren and I are glad you like the changes. Change is good...it keeps us on our toes...lol Love ya Nan
Like Chosh said, it is great. I am missing the journals. Most of them have not been written in for a long time.
Your new look is great! Happy Valentine's Day to everyone who visits here today.
BREN AND NAN----- V E E E RY NICE--LIKE YOUR NEW CHANGE !!!!
Hello All! Bren and I received an e-mail from the son of a PWP asking for some help. We would appreciate any suggestions any of you may have. We will then forward the information on to him. Here is his request... "My question is... are there any adapted computer accessories that can assist a Parkinson Patient? I'm aware of 'voice command software'. Anything else? He is still very mobile... I'm just considering the frustration factor and the future". Regards, Nan aka TLC
CAROLYN--I LIKE THAT--HAVE SENT COPIES TO ALL MY "OLD" COMPUTOR FRIENDS.
>Can you relate to this? > >Bill Gates or GM > >For all of us who feel only the deepest love and >affection for the way computers have enhanced our lives, >read on. At a recent computer expo (COMDEX), Bill Gates >reportedly compared the computer industry with the auto >industry and stated, "If GM had kept up with technology >like the computer industry has, we would all be driving >$25.00 cars that got 1,000 miles to the gallon". > >In response to Bill's comments, General Motors issued a >press release stating: If GM had developed technology >like Microsoft, we would all be driving cars with the >following characteristics: > >1. For no reason whatsoever, your car would crash twice > a day. > >2. Every time they repainted the lines in the road, you > would have to buy a new car. > >3. Occasionally your car would die on the freeway for no > reason. You would have to pull over to the side of the > road, close all of the windows, shut off the car, > restart it, and reopen the windows before you could > continue. For some reason you would simply accept this. > >4. Occasionally, executing a maneuver such as a left > turn would cause your car to shut down and refuse to > restart, in which case you would have to reinstall the > engine. > >5. Macintosh would make a car that was powered by the > sun, was reliable, five times as fast and twice as easy > to drive - but would run on only five percent of the roads. > >6. The oil, water temperature, and alternator warning > lights would all be replaced by a single "This Car Has > Performed An Illegal Operation" warning light. > >7. The airbag system would ask "Are you sure?" before > deploying. > >8. Occasionally, for no reason whatsoever, your car > would lock you out and refuse to let you in until you > simultaneously lifted the door handle, turned the key > and grabbed hold of the radio antenna. > >9. Every time a new car was introduced car buyers would > have to learn how to drive all over again because none > of the controls would operate in the same manner as the old > car. > >10.You'd have to press the "Start" button to turn the > engine off. > >Please share this with your friends who love - but >sometimes hate - their computer!
TODAY IS THE DEADLINE FOLKS...Nan and I will be putting them on line tomorrow and after they're on line that'll be it. We have several, but we want more...how often do we get to say thanks to our CarePartners in public. Some are sending pictures and some are not...that's your choice. Just say a few words, we'll make them pretty! Come on now...GO FOR IT! Just go to the frontpage of www.plwp.org . You don't even have to scroll down. The word VALENTINE will just fly in if you'll watch and give it time. LOL Just click on it.
I also posted about the scooter on the Parkinson's Forum and received two helpful suggestions. I responded with the following and it applies to all. So instead of rewriting it, here it is ;) Bren>>>>>>> "Thanks so much Bruce and mk! I was hoping for input and you two always come thru. I don't think I'll be needing one soon...but when I do buy one, I, like others, need to have all the "scoop". I didn't think far enough ahead to even think about mud, etc.>>>>>>> On the Star Scooter site, they have a FAQ page. Maybe we could all put our two cents together and create a FAQ sheet for things like the scooter...other things too for that matter. Nan and I could possibly add a page to the PLWP website for FAQs on various equipment needs.>>>>>>> Give us your thoughts here and if anyone is game for taking the project on, write us at plwp2000@yahoo.com "
Dan> Why don't you set up a chat session for later this week...post it here, on the calendar, on the chat room message board, on the MGH PLWP forum as well as the Parkinson's Forum and anywhere else you can think of, a few days in advance. That's how we get a good crowd. This is how we want all our members to help us get the chatroom BUSY!! Chosh started it, now guys GO FOR IT! The chatroom belongs to everyone. >>>>The rules are ... well there's only one actually. Treat others as you would want to be treated. That pretty much covers it all I think.
BREN AND NAN--I GOT A MICROPHONE AND HAVE IT CONNECTED. I AM LOOKING FORWARD TO GIVING IT A TRY. I AM SURE THERE ARE SOME RULES TO FOLLOW TO AVOID STEPING ON EACH OTHERS TOES.
Like me, many of you have long distance walking problems...sometimes that distance is just to the mail box and back. Well, I've been keeping at eye out for a scooter type appliance for when it becomes necessary for me to get something. I think this might be the answer for me anyway. Check it out if you are so inclined. The price quoted on the TV was $1250 but right now it's $999 plus they pay shipping and handling. The URL is: http://www.thestarscooter.com/ > Ken> I'm so proud of your efforts. I just know God will bless them..... Later gators...
Wednesday, February 12, is the deadline for submitting a Valentine for your CarePartner. Don't forget...
Well, I have another friend interested who is going to email my website out to her friends because of the tiger for the Clemson Tigers. I have a former high school class mate that will simply be sending a doonation to me o send into the Parkison Alliance. I also last night passed out several of the buiness cards that I made up for slling the cafts and my wife boss will be handing several of them out. Also to aid in this project, iemailed the manufacturer to se if I could byy directly from them or to see if they would be willing to donate several figurines for the ause.
I hope everyone is having a great weekend. Mine has been fairly peaceful. Today we are getting some snow ( not unusual for Rochester) but thank goodness the wind has died down. Hey Jackie> Thanks for sharing your tip on prenatal vitamins. I am so glad to hear they worked for you. Hi there atobarb! Long time no talk to. Congrats on your new home. Say hello to Jake. Dan you little devil...79 years young eh...wish I had your energy...lol! Congrats to you on your sales Kenneth!! Well I am going to watch a movie...see you all later. Nan
I apologize if this turns out to be a duplicate posting -- I'm having some computer problems. Just wanted to mention that if anyone is having problems with hair loss while using Mirapex or Requip, they may want to try taking prenatal vitamins, zinc and selenium supplements. I had a real hair loss problem with Mirapex, a co-worker who had worked as a nurse in a psychiatric facility, suggested trying these vitamin/supplements. Her doctor had prescribed these when patients had hair loss due to medications. It wasn't a quick fix, but after 2-3 months the hair loss stopped, and its beginning to regrow. Of course, I can't be sure it was the vitamins/supplements, but I'm still on Mirapex and this was the only change I made. Hope this can help someone. Have a nice Sunday.
HI! Just thought I would check in & lat you know that we did not depart from this planet but moved 325 miles to western Pa to have family support! Jake is holding his own & has tolerated the move quite well. I hope that I can check in more frequently, I sure appreciate all of the work everyone puts into this site!! Cheers, Atobarb
Some months back you had a couple of members posting about their hair loss while using Mirapex or Requip. I had the same problem with Mirapex, my hair became very thin and unhealthy (I even purchased a couple of wigs). A co-worker, who had worked as a nurse in a psychiatric hospital, said that when their patients had hair loss from drugs, her doctor prescribed prenatal vitamins (another doctor she worked with said what you really needed from the vitamins was the zinc and selenium). I tried the prenatal vitamins plus zinc and selenium supplements (the old more is better theory). It took 2-3 months, but the hair stopped falling out and is beginning to regrow. I can't promise that it was the vitamins and supplements that did the trick, but if someone is having this problem its worth trying -- and yes they did give a 56 year old woman buying prenatal vitamins some strange looks. Hope this helps someone. Have a good day.
BREN---I WILL FIND OUT ABOUT A MIKE THIS WEEK.YOU ARE SO KIND WORKING WITH THIS OLD [FORGOT THAT WORD YOU USED] . JUST TO SET THE RECORD STRAIGHT I AM NOT 70---I WILL BE 79 THIS SUMMER--I ONLY ACT LIKE 70. LOVE
Brenda & Nan, I just thought I would let you know That I have recieved my first order for two of the ceramic figurines that I have been painting. For anyone interseted in purchasing, my webpage with pictures is available on line at: http://hometown.aol.com/krdelabre/myhomepage/profile.html They are also being sold at Joan Blessington-Snyder's store Jitterbug, in CHillicothe, IL.
Have you ever had a party and no one came! LOL!!! Well actually me neither, but did I get your attention? OH WELL, lol. Seriously, I hosted a chat this morning (almost an impromptu one) and Terry and Dan were there. This was a good thing because Dan (who guys and gals is a proud 70 years old, mind ya!) has been having some problems getting into chat. Well, as luck would have it, one of our resident gurus was there, Terry of course, and thru him and trial and error on my part, I've learned a few things. I'll type them up and put them on here this afternoon, I hope. So keep watchin!
Pauline> Great idea...you know I never thought about the grocery stores. I gave Walmart, ToysRUs and J.C.Penneys gift cards to nieces and nephews for Christmas...they loved it. What an idea to use it for groceries though. Thanks...thanks alot.
CHAT SESSION...Nuh uh...I ain't gonna tell you when. Ya gotta go for the gusto ladies and gents and check the calendar to see when I'm gonna follow Chosh's footsteps and try to get a gang there to chat. Click on calendar and then click on the topic to read the details. God willin and the creek don't rise, I'll be there too!!
NAN AND BREN---I THINK-I THINK==I THINK I GOT IT. I WILL HAVE TO WAIT UNTIL SOMEONE IS ON SO I CAN TRY IT OUT BUT I HAVE NEVER BEEN THIS FAR BEFORE.
Dan, Sorry.....My fault....parkie fingers. The e-mail addy is PLWP2000 not 200....!! Talk to you soon, Nan aka TLC
NAN--MY E-MAIL TO YOU WAS RETURNED WITH A NOTE THAT THERE IS NO ACCOUNT WITH THAT NUMBER. THIS JUST IS NOT MY DAY. DO YOU HAVE ANOTHER NUMBER?
IS ANYONE ON THE CHAT LINE TONIGHT?
Hi everyone, I am writing to pass on a helpful hint. As a 'Parky on a pension' my family and friends often gave me Safeway gift certificates for special occasions. Now Safeway has come out with a 'gift card.' It looks just like a credit card and can hold various denominations up to $100. My friend recently got me one for $50. I find it so easy to use when buying groceries. No fumbling in my purse for cash, cheques, etc. No secret number to punch in with debit card. All I do is hand the cashier my gift card, she swipes it and the grocery purchase is deducted from the balance. It even prints out the balance at the bottom of your receipt. This card has sure saved me a lot of embarrassment (keeping people waiting while I fumble). I wrote to Safeway and thanked them for helping people with disabilities. Have a great weekend everyone. Best wishes from Pauline.
Hi Dan, I want to try to clarify your question regarding the PLWP chat room and PLWP membership on the website. It is a little confusing. If you go to our website www.plwp.org and join as a member this puts you into our membership database. New members then get a welcome package. It also provides us the opportunity to communicate updates on plwp news and events to all of our members via e-mails. Joining on the website however does not give you access to the PLWP yahoo chat room. Yahoo has a separate system that allows people to participate in the chat room activities. The e-mail you recieved was to encourage that you have joined membership on the website and the chat room. If you have any other questions feel free to contact me at PLWP200@yahoo.com I look forward to chatting with you Dan. Welcome to you Gary B and a howdy to you Maureen (be careful we gots lots of snow here in Rochester NY, he he) Warmest Regards, Nan
Condolences We are very sad to announce that Ryan Tripp's father passed away this morning of a heart attach. We know the PLWP family offers him our support and condolences. Together We Make A Difference, Love To all Bren and Nan aka TLC
BREN-- I FORGOT TO ADDRESS MY NOTE TO YOU---SORRY. HOWEVER ANYONE WHO KNOWS THE ANSWER PLEASE REPLY.
I THINK I GOT ON THE CHAT LINE AT LONG LAST.HOWEVER I GOT AN E-MAIL WELCOME TO PLWP CHATLINE AT YAHOO AND WAS INVITED TO JOIN PLWP. I THOUGHT I WAS A MEMBER??????WHAT DO I DO NOW?????-CONFUSED
Maureen> Hey gal, good to see ya! Hope to see you around these parts more often. And don't worry, I'll throw no snowball at you! You scarrrre me! LOL ....Gary B> Welcome to PLWP. Tell us more about yourself. You'll find some wonderfully warm and caring people here. Please vist our PLWP Yahoo Chatroom by clicking the link above. We plan to have general chat sessions as well as some special topic chats. We also plan to have "New Member" Chats so that we can get to know you and other new members. We'll post all scheduled chats here as well as other message boards. Keep an eye out for it.
This is my very first note and first time here in PLWP. I hope everyone is having a good dy, or if not let's hope for a better day tomorrow
It is wonderful to finally learn what is the cause of PD. Now, if we could just legislate it all away, we would be footloose and fancyfree. You people either got to sharpen up your pitching eye or else confine your activities to a safe time and location. Since I have had Parkinsons for twenty-three years, I sure don't want to catch this PD thing; so fair warning - anyone approaching me with a snowball in hand gets blasted. Read and heed lol lol.
Just wanted to say that I really enjoyed talking to everyone in the chat tonight. It was really nice to get together. Lets do it again real soon. Love ya Nan
Hey...today the Fridge as we now know it is 1 Month old! Look at the hits, almost 1200!!! What does that tell us? WE NEED EACH OTHER! Thanks to all the people who share hear and thanks to all those who just come by to read. One thing is for sure, if you need a PLWP, you'll find one here!! Love to all!
Chosh> I've been warned about opportunist like you...making your fortune on the healthy, wealthy and famous. I was told when I joined these ranks that I would be accosted by such an individual but I thought "not". Though normally I would have my people contact your people to settle this matter (too trite to spend my valuable time), this one time I will meet you at 6PM in the PLWP Yahoo Chatroom Wednesday night (tonight) Feb 5, to dual to the death of Parkinson's (or talk about it anyway!) I've always known I could count on you and the others you mentioned to be active in this endeavor. So dear friend, I accept your challenge...come prepared to dual!!!! (LOL LOL LOL)
Vicky> In the event no one from New York sees your message here, may I suggest you contact the airline you are flying in on. When I travel now, I always tell them in advance that I need help and I've never been disappointed. I honestly believe they would assist you in getting a cab safely. Good luck.
I am going to New York City on Valentine's Day, February 14, for a fluoradopa PET Scan. I was diagnosed with Parkinsons Disease 13 years ago. I have seen 5 neurologist, all who confirmed the diagnosis (including one from the Mayo Clinic who treated me for 2 years). Recently when I went to the University of Minnesota for and evaluation for a DBS surgery, I was turned away because the neurologist did not feel I have Parkinson's Disease. He is the only neurologist in the area who can approve patients for DBS surgery. I need the PET scan to show if my diagnosis of PD is correct. I am hoping that there is someone in the New York area who would be willing to meet me at the LaGuardia airport when I arrive at 10:45 Am and help me find a cab to North Shore Memorial Hospital where the test will be done. I cannot take any meds or food before I leave and will be in bad shape when I arrive. We cannot afford two airfares so my husband can't accompany me. I will not have a problem getting back to the airport as I will be back on meds by then. Please e-mail me at vlhperry@yahoo.com if you are able to provide assistance. Thank you
CHOSH---THAT SNOWBALL GOT ME RIGHT IN THE HEAD---DON.T WORRY THERE IS NOTHING THERE TO HURT--
Bren: As a result of your snowball hit to the head, I now find that I have Parkinson's disease, and since Patti was standing directly behind me she's got it too. She threw a snowball at Carol, who threw one at Nan and now we're all down with the darned disease. Send me your lawyer's name and number. Inadvertently, I have sent e-snowballs to sunshine, dan, junglecurry and dee, so they need to be tested for this serious condition also. To find out more about this condition, come to chat tomorrow Feb 5 between 6 and 7pm.
If at first I do not succeed? I will try try again!! See yall at the next chat hopefully. faith and hope, Sandy
Thanks everyone. Last night was fun. Hope we can do it again soon.
Techline for Tuesday, February 4th YaHoo IM - terrybowers_76686 MSN IM - terry@terrybowers.com e-mail - plwp.tech@terrybowers.com
Just wanted to thank everyone for the chat last night. Thanks to Chosh for arranging it and to Patti, Chosh, Sandy, Dee, Ken, Ted, Sylvia, Terry, Sunshine (don't think I missed anyone!) for being there. Also, thanks to Dan who tried to be there! LOL Terry Bowers has offered to help with the technical problems ... I'll double check with him about posting his email address. If he consents, I'll post it here so that you can contact him directly. I won't try to fool you, we're still having a bit of trouble on Yahoo Chat...but I think everyone that was there will tell you it was worth the effort. Later gators....
Brenda takes aim from behind an old oak tree with yellow ribbon tied around it...cocks her arm and hurls snowball at Chosh! Oooops, it hit her head...ahhh well that's a safe place as hard as her head is!!! (Who said that????) lol
sorry I left the chat so suddenly my computer froze up.
today, i set up an appointment for a second opinion, in april, with a movement specialist, in boston. i'm looking forward to it and i'm not! just wish i didn't have to wait so long!!
You're right. It's too quiet here and we need a snowball fight! SPLAT!!! I got you, Brenda.
Dan, don't feel dumb...we've all had to learn how to get around on the internet. If you'll email me at plwp2000@yahoo.com and give me your phone number, I'll try to call you before the chat that has been arranged by Chosh in the PLWP Yahoo Chatroom tonight at 7pm and help you all I can. Hope to see many of you there tonight!! ...Bren
I GUESS I AM TOO D--- DUMB TO UNDERSTAND HOW TO POST TO THE CHAT ROOM. I SIGNED UP WITH YAHOO--I DID NOT USE THE SAME NAME I USE WITH PLWP. I STILL FAIL TO FIND A PLACE TO POST A MESSAGE. THE ONLY CALENDER I FOUND DOES NOT HAVE AN "ADD" TO CLICK. THE OLDER I GET THE DUMBER I GET---
Sal, Thanks for the push! I volunteer every Sunday for four hours at the hospital here and had to leave after 3.25 hrs. today...just too fatigued today. Right now we are experiencing a really major warming. The other day it was 86 degrees! Much too warm for this time of year. Hopefully it will cool down again.
FAVOR NEEDED: Please don't wait until the last minute to send us your valentine for your carepartner...Thanks ....THE URL IS: http://www.plwp.org/valentine_message.htm
christine, i think it's great that you make the effort anyway, to exercise, despite the difficulty you have. you go girl! got to say that i envy the warm weather you have in arizona. right now it's snowing. we expect to get 3 0r 4 more inches of snow followed by a deep freeze. yikes! i'm ready for spring!!!
AS POSTED IN PLWP YAHOO CHATROOM....We have an idea we would like to try. If it works, the chatroom will manage itself with a little help from you. The menu to the left of the screen has a Calendar option. If you know of a time that you will be in the chatroom, either daily, weekly or a one time occurrence, click on Calendar and go to that day. Click add and just type something like "Will be in chatroom from 1PM - 3PM, John Doe" By the same token, if you want to chat and want to know when someone will be there, just click the calendar and check it out. We know how disheartening it is to want to chat and no one be in the room. We've tried several things, maybe this will work. Use your imagination too. If there's a special topic you want to discuss, set it up using the calendar and then post the details on the Message Board here and on the PLWP website and any where else you feel its appropriate. Just be sure to allow enough advance time to get the word out. We would suggest 5 to 7 days. Nan & Bren
ON THE HOME PAGE LISTING "MESSAGE BOARDS" UNDER THIS HEADING IS "MGH PLWP" AND "MGH PARKINSONS". HOW CAN I POST ON EITHER ONE OR BOTH OF THESE?????
Brenda and Nan, Just thought I would tell you that I spoke with Carol Walton from The Parkinson Alliance adn at the Fashion Shows and silent auction that they are having on March 23rd; they will be actioning off some of my ceramics. Plus I hope to ship the following items to Joan for her shop on Monday. a 5 piece village, Teddy Bear Bank, a Piggy Bank, Wolf, Tiger, Lighthouse.
Gosh Sal, the Unity Walk sounds great! I won't be able to attend, though. I am a support group leader for an Essential Tremor Support Group in Phoenix and I am planning a State Conference that will be on April 26th. As far as exercise goes...if I over do it I am so tired I feel like crying. So, I have to catch my self and stop before I get to that point. I just spent two hours walking around an RV Show and I am exhausted. My left leg doesn't want to go any where anymore and my right leg is tired from carrying my left. Can't win! Thanks for responding to my message!
Christine i've found that exercising boosts my spirits. even though I notice that my energy level is not where it used to be, i feel that it is one of my ways of fighting back...not letting the pd get me down. the unity walk is in New York, Saturday, April the 26th.. it's going to be held at Central Park, i believe. i found about it in the Living Well Magazine. according to the magazine, 6,000 people attended last year. There is an e-mail address...www.unitywalk.org...that you can contact. i hope to go!
Sal...where is the Unity Walk?
Sylvia and Bren...It is certainly true that their are many variations to PD. My Neuro thought as soon as he did the exam that it was PD, but he sent me home with Sinemet for a test and I didn't know it was a test. I called him three days later and told him I was surprised the medication worked so quickly! He said congrat's you have PD. So, that cinched it for him on my diagnosis. I am still very much in denial...but my physical therapist and husband are trying to tell me I have all the signs. I just started to exercise. Everyone keeps telling me it is important. Bren, is it balance problems that caused you to fall? Take care...that is so frightening! Last time I fell I sprained my left foot really bad. Sylvia, if you do not have tremor, how did your neuro recognize it? Thanks for the conversation!
Bren, I am so sorry to hear about your fall. Please let us hear the results of your MRI. I had to have an endocscopy and a colonoscopy on Monday because all of a sudden it seems Iam anemic. The prep for the exam was 100X worse than the exam itself, for which they are pretty free with the good drugs. I seem to be fine except for evidence of reflux, which I already knew because I live on Maalox. It seem, however, that my capalaries are very, very close to the walls of the colon and they think I am seeping blood from that. I hsve to go back to that doctor in three weeks and she's going to give me a prescription...just what I need another pill to take. Chrristine, nice to meet you. I was diagnosed about the same as you, but neuro said he was sure I had PD at least five years prior. I am not tremor dominant but problem is on right side. After about a year of working with meds to find the right combination I think I am doing extremely well. I hope most sincerely that your leg weakness can be overcome because exercise is so important in PD, particularly walking. Take care, Chrsitine
Bren, I am so sorry to hear about your fall. Please let us hear the results of your MRI. I had to have an endocscopy and a colonoscopy on Monday because all of a sudden it seems Iam anemic. The prep for the exam was 100X worse than the exam itself, for which they are pretty free with the good drugs. I seem to be fine except for evidence of reflux, which I already knew because I live on Maalox. It seem, however, that my capalaries are very, very close to the walls of the colon and they think I am seeping blood from that. I hsve to go back to that doctor in three weeks and she's going to give me a prescription...just what I need another pill to take. Chrristine, nice to meet you. I was diagnosed about the same as you, but neuro said he was sure I had PD at least five years prior. I am not tremor dominant but problem is on right side. After about a year of working with meds to find the right combination I think I am doing extremely well. I hope most sincerely that your leg weakness can be overcome because exercise is so important in PD, particularly walking. Take care, Chrsitine
it was very nice to have someone respond to my note. although i have lotsa support, from family and friends, it does feel good to have contact with folks who are having a similar experience. i am considering going to the Unity Walk, scheduled for April. is anyone else thinking about going?
Thank you for your response to my note. I just returned from physical therapy and they are going to evaluate me for a foot/ankle brace since I am so weak. They said it may help to keep me from falling. It is good to know that weakness is actually a part of this disease. I looked it up in several books and didn't see much about weakness. I am also on Requip 4 mg. Tid. As long as I eat before taking it, I am fine...otherwise, I get a little upset stomach. Thanks again for your response...lots of good energy to you all!
I 'd like to share with you guys about my Neuro visit today. Last Friday I really took a hard fall on the frontporch...concrete. My balance has been steadily getting worse and I have a huge goose egg on my head as a souvenir of this latest development. I told my neuro about it today and that I had a Cat Scan at Emergency and everything was ok. He wasn't satisfied with that, so now I'm scheduled for an MRI next Tuesday. I didn't expect the MRI and am not overly thrilled with having it. But I am anxious to see the results. I don't know what he's expecting to see or hoping not to see, but I'll let you know. Life is never dull!
Hey there Sandy, Patti, JaneMartha, Dan, Fig and Ken. It's good seeing you all and having you post here on the Fridge. Sal, being diagnosed with PD or any other degenerative disease is a kick in the pants for all of us. I was dx'd with PD over 15 years ago and still have times of disbelief. The big thing is to never give up hope and hang on to your faith. Christine, thank you for your compliments of PLWP. We have some wonderful people here and together we will make it thru this thing. My journey with PD started with weakness and tremor in my right arm, hand, leg and foot. It was several years before my symptoms progressed. Lazarus, it's interesting that you elected to have the DBS so early in your PD experience. I'm not familiar with anyone having it that early on. We have a contact at Medtronics who manufactures the unit and they have told us DBS should not be a last ditch effort. I suppose you're living proof of that. To all the newcomers, we say welcome. Glad to have you aboard. Soon, we hope to have an active chatroom that will be manned around the clock as much as possible. Please keep checking here for details.
Hello, This is my first time on this webpage. Very interesting and well formatted. I was diagnosed with PD a little more that a year and a half ago. I have slight tremor left side (non-dominant) and my biggest concern is weakness in left arm, hand, leg and foot. Is this something that other have experienced?
Janemartha55 I am glad you are off of Mirapex. I would like to chat with you as I had many adverse reactions to this medicine and am now on Requip. I too worried about side effects from another agonist. Please feel free to IM me on Yahoo at gunnyswife68 or email gunnyswife68@yahoo.com Lazarous what a wonderful name...some day may we all rise from the depths of this disease. Won't that be a great day! Unfortunately, I must say that depression and denial are a big part of this disease. I don't care how hard we try to remain optimisic, some days the trials and sorrows we are on the receiving end of cause denial and anger. It's normal because we are human and we are continuously going thru the cycle of grief because of diminishing abilities. Grief is normal whether we lose a friend or part of ourselves. Try to remain as positive as possible, "This too shall pass", with a little help from all your friends here at PLWP.
Lazarus...Iam so happy for you! I just got off of mirapex because of sleep attacks and some physcological side affects. Iam so scared the same side affects will happen again now that Iam on artane. So, it's very good to hear of your DBS and no more meds! Thanks for sharing this news...it gives me hope.
I am somewhat new to posting. I posted about a year ago when my right-sided movement-dominated PD was starting to get pretty bad. Was on 1.5 mg sineemt 4 times a day and mirapex. Went to the VA Parkinson's center in Philadelphia and underwent one-sided DBS. I knew on the operating table that the operation was successful. My experience with the VA was positive. I was operated on Thurs and out on Saturday. No more meds and I swing my arm and my walking is more normal. It is like I never had PD. Lazarus
Just a few to say I'm thinking of all of you and let you all know that all is well here in Myrtle Beach ....the Lord has heard our prayers Bless You all !
Just a few to say I'm thinking of all of you and let you all know that all is well here in Myrtle Beach ....the Lord has heard our prayers Bless You all !
For all PLWP Memebers Here is the sight address: http://hometown.aol.com/krdelabre/myhomepage/profile.html These are what I have done so far. Pease check it out.
For all PLWP.org members I am paintina and selling ceramics to help Raise Money for Parkinson's Research. Please check out the following sight which is my HomePage for selling the caramics
hi there! i was just diagnosed with with PD in November,2002. i am in the process of seeking a second opiniona and have been prescribed Sinemet. the hardest part has been just accepting the fact that i have this disease. on one level, i know that there's a real problem, but keep thinking that the next docter will say the tremors are due to my nerves or a result of old injuries. can anyone relate? it's real cold here, in maine. hope it's warmer where you are at!
Hello dear sweet Patty! Move over girlfriend!! Hot chocolate? You have any marshmallows to go with that? Miss you too hun. faith and hope, Sandy
Hey Sandy, fancy meeting you here. I followed your lead and just finished off a big bowl of vanilla ice cream with chocolate syrup and whip cream. Ron went for the cookie dough ice cream. There's plenty left for our friends though. Now let's see, maybe some hot chocolate...yum! Miss you girl.
Howdy, howdy...Pretty nifty place we got here. Hey Bren, I raided the refrigerator and polished off Joan's Irish Cream...and I heated up some nachos...hey and I also called in for some of those killer hotwings from up your way. I left you some. Come on family and friends any one care to add to my late night raid of the family fridge? It helped me get my mind off this mind boggling pain I am experiencing. Well at least I think I cleaned up my mess....till next time...faith and hope...Sandy
Dan, Brenda, Raul, I thank you all for taking the time out to respond to my problem. It has given me much to think about as well as bring my spouse to this site and let him read all your answers to learn what I am feelkng quite normal. As usual, parki friends are the best in the word and always willing to help each others distress. Thanks is a small word but it has lots of appreciation
BREN--I HAD POSTED A NOTE TO SANDY AND THEN READ YOUR POSTING. I DID NOT KNOW WE WERE SO CLOSE TO WHERE YOU LIVE. WE LIVE IN HICKORY, N.C.. I AM TOO LAZY TO RETYPE MY NOTE TO SANDY SO PLEASE READ SANDYS PORCH.I DO NOT TRAVEL ANYMORE BUT IF YOU EVER GET TO HICKORY MY WIFE AND I WOULD LIKE TO MEET YOU. SINCE SANDY LIVES ONLY ABOUT 10 MILES AWAY WE COULD HAVE A PLWP MEETING
Hi everyone, I'm so glad to see people starting to communicate here. First, I'd like to say to Annonymous that we're here for you. Most of us, at one time or another during our journey with PD have experienced some of the same "stuff" as you're describing. And there are some people out in the world who cannot handle being a Carepartner. Personally, I've always said I'd rather be me than my husband. I don't think I would be a could carepartner. Those that absolutely cannot handle it are better off to go ahead and let you know but just make absolutely sure you are understanding them. You know, just as we have to accept changes in our lives, so do they. But there's a huge difference, we don't have a choice, they do! The other thing I might say is to be a little easy on your partner...I know my husband and I have used some pretty strong language a time or two...but we knew we didn't mean it. I hope you don't think I'm being hard or tough on you here...I just want you to have all the opinions based on experience you can have before doing anything drastic. Dan, you're a marvel. Keep posting! Check the number to the right of the posting box. We started the count less than a month ago...that tells you people are reading and just have nothing to say yet. Popple, welcome to you. Warm...yea it ain't an easy chore at the moment. I live near Gatlinburg, Tennessee and this is already the worse winter we've had in a great while with no relief in sight. Love and hope to y'all, Bren
This is my first try at using the fridge. I thought I'd say hello. Hope everyone is keeping warm.
This is my first try at using the fridge. I thought I'd say hello. Hope everyone is keeping warm.
Dear Anonymous, dont ever give up. I know what you are going thru ive been thru those times. My marriage broke up because of this condtion, I am all alone now but I refuse to give in to PD. Yes I have my periods of sadness but I refuse to let it keep me down. Talk to others with this condition and get their opinions and input. I know firsthand how tough it is, but never give up and your dignity will follow, you are worth it.
DEAR ANONYMOUS--THIS IS ONE MANS IDEA OF WHAT COULD BE HAPPENING. IS IT POSSIBLE THAT HE IS AFRAID OF THE UNKOWN? SOME PEOPLE THINK THEY WILL "CATCH" A DISEASE IF THEY COME INTO CONTACT WITH IT.WHEN MY WIFE HAD CANCER I WANTED TO HOLD HER TIGHT AND ABSORB THE CANCER FROM HER DEAR BODY. AT THE SAME TIME I RAN INTO MEN WHO DID NOT WANT HOLD, KISS OR GOD FORGIVE HAVE SEXUAL RELATIONS WITH THEIR WIFE. IF HE IS FRIGHTENED YOU HAVE A CHANCE TO HELP HIM. IF NOT, YOU MAY LOSE A SPOUSE BUT CERTAINLY NOT YOUR DIGNITY OR ANYTHING ELSE. AT THIS TIME YOU ARE DUE HIS LOVING CARE AND COMFORT AND SHOULD NOT BE EXPECTED TO WET NURSE HIM. HOLD YOUR HEAD HIGH.
The effects of this disease are finally digging into my spirit. I always felt in control but the harder I try to be uplifted and uplifting the lower I seem to plunge. My spouse acts like a concerned brother instead of husband and the crevice seems to be growing. Counseling has not helped. So now what. What else is there left to lose. Spouse, dignity,............somebody got any ideas.
Bren, thank you so much- glad to be here!!!
Good morning---anyone up?
BREN--I LIKE THE CHANGES YOU HAVE MADE SO FAR BUT WHERE IS EVERYONE??? I SHOULD HAVE SAID "GOOD MORNING" THIS MORNING. I WAS READING ONE MORNING PAPER WHEN YOU POSTED AT 5.05AM. IT COMES ABOUT 4 ;00AM. MY SECOND MORNING PAPER ARRIVED AT 5 ;15 AM. I GUESS MY POINT IS, THERE IS SOMEONE OUT THERE----NEXT TIME I WILL SAY GOOD MORNING.
Hi Raul and welcome to PLWP. I hope you find a home here with us...there are so many good, warm and wonderful people here that will let you know in a heartbeat that you're not alone. I know what you mean about feeling alone and needing someone who knows how you feel. I think all of us have felt that way at one point in our life or another. As a matter of fact, in the middle of the night when our families can sleep and we cannot, that feeling raises its head sometimes. But we know we can always feel the support here at PLWP and get rid of the feeling. It's almost 5AM and I've been up awhile. Just reading your post and typing this response...well, I'm not alone either. Thanks for posting.
Hi, my name is Raul, im 46 yrs old. I live in California(born in Cuba). Have been dx with PD 8 yrs ago. This last year has been very difficult on me. At times feel very alone, dont know where to turn for assistance(help). Just need someone who understands what im going through - thank you plwp. lacost26@yahoo.co.uk
Anybody hear from JaneMartha? I seem to have lost touch with a good friend.
TO ALL PLWPS: Our goal for communication tools for the PLWP membership is to have ONE on-site Message Board and ONE Chatroom. This is the Message Board and is accessible on the frontpage, left column. It is also accessible from the drop down Menu under the "Message Boards" tab. You will notice, the popup window is to be discontinued the end of January. The chatroom is another matter. We want to locate the "perfect" utility for our needs. A portion of the survey request on the front page of the site is dedicated to members "druthers" for a chatroom. Please take time to complete the survey. PLWP has reached a threshold...one of dealing with more members. This is a good thing! We need your input and if interested, your sweat! Together we make a difference!
IN MY NOTE ON DRUG COSTS THE $1000.00 IS PER MONTH.
HEALTH INSURANCE COS. ARE RAISING THEIR RATES 20 TO 30% FOR 2003. I HAVE BEEN CHECKING AROUND FOR BETTER PRICES AND I WAS REMINDED OF AN OLD AL JOLSON SAYING "YOU AIN,T HEARD NUTTIN YET". IF YOU ARE UNDER 50 YOU MAY NOT KNOW AL JOLSON. SOME MAJOR DRUG MFG. HAVE BOUGHT GENERIC COS. AND ARE PLANNING SOME LARGE RAISES. GENERIC DEALERS IN CANADA HAVE BEEN ADVISED TO ADJUST PRICES OR THEY MAY HAVE TROUBLE WITH SUPPLY. I STILL PLAN TO GET QUOTES FROM CANADA. THE PRICES I HAVE SO FAR ARE FAR BETTER THAN USA BUT CANNOT FIND EVERYTHING I USE. I HAVE CHECKED MAIL ORDER IN USA . MY DRUG BILL NOW IS A LITTLE OVER $1000.00 {BEFORE INS]AND I COULD SAVE A TOTAL OF $19.00. HAS ANYONE BEEN CHECKING PRICES AND SO DO YOU HAVE ANY SUGGESTIONS?
Hello Everyone! I am Stacey, a level one nursing student at Bryan School of Nursing in Lincoln, Nebraska. I have been assigned an Empathy project that is due on Feb. 17. For this empathy project I was assigned Parkinson's Disease. I have to write two papers for the project. One is a letter to a loved one describing my life as if I have been diagnosed with Parkinson's disease. The other paper is a letter to a nurse describing the care that I would want to have if I was a patient that has PD. In order for me to get a basic understanding of what it is like to live with Parkinson's Disease, I am assigned to interview someone living with PD. I was hoping that someone would be willing to do an interview with me via email. The interview would consist of questions about the symptoms that you have experienced, lifestyle changes that you have experienced since being diagnosed, any treatment that you are undergoing, and some of your methods of dealing with your disease. I do not expect anyone to answer any questions that they do not feel comfortable doing so. This would be a wonderful contribution by helping a future nurse have an understanding of what life is like living with Parkinson's. Thank You Very Much for your time and assistance. You can contact me via email if you are willing to do this interview. My email address is stacey_roit@hotmail.com Thanks Again
Hello Everyone! I am Stacey, a level one nursing student at Bryan School of Nursing in Lincoln, Nebraska. I have been assigned an Empathy project that is due on Feb. 17. For this empathy project I was assigned Parkinson's Disease. I have to write two papers for the project. One is a letter to a loved one describing my life as if I have been diagnosed with Parkinson's disease. The other paper is a letter to a nurse describing the care that I would want to have if I was a patient that has PD. In order for me to get a basic understanding of what it is like to live with Parkinson's Disease, I am assigned to interview someone living with PD. I was hoping that someone would be willing to do an interview with me via email. The interview would consist of questions about the symptoms that you have experienced, lifestyle changes that you have experienced since being diagnosed, any treatment that you are undergoing, and some of your methods of dealing with your disease. I do not expect anyone to answer any questions that they do not feel comfortable doing so. This would be a wonderful contribution by helping a future nurse have an understanding of what life is like living with Parkinson's. Thank You Very Much for your time and assistance.
YESTERDAY I SENT 90+ E-MAILS TO STATE SENATORS SUPPORTING STEM CELL RESEARCH. THIS IS VERY IMPORTANT TO ANYONE WITH PD. IT IS NOT TO LATE FOR YOU TO EXPRESS YOUR FEELINGS TO YOUR SENATOR. PLEASE DO SO. WE DO NOT WANT HUMAN CLONING BUT THE STEM CELL RESEARCH IS A MUST. IT IS TOO LATE TO HELP ME BUT SO MANY OF YOU CAN BE HELPED.
Hey there Dan, Patti and Maureen. First, Dan, when I think of you and your age along with Pd and see your enthusiasm for others...well fella, you light a fire under my feet. Don't ever stop! And I definitely agree with you about Sandy. The girl's like a magnet, drawing people to her. Patti, I knew you'd be one of the first to really get in here ... heck, you've been here all along! Hey everyone, be sure to look at miss patti on the frontpage. And HI MAUREEN...it's so good to see you. I think you've found the secret to living with this stuff. Seems the more I look at someone else and how I can help them and don't look at myself...well, the better I feel. Gal, I've missed ya! Hope you stay around more. Nite all...it's late. I've been playing pinocle on Yahoo and lost all track of time. Later
Hi gang: This looks like a good idea. I have just found out there is a second person in our small community of about 450 with PD. She is an older lady of 87 years and is also trying to cope with essential tremor. Having lived with PD for 23 years now, I thought perhaps I could be of some assistance and encouragement, and so, the other day, I visited for an hour or so. I found it even made me feel a little better just being in the company of another parkie.
Great job Dan. You have every right to feel good about this. You're doing your Parkinson Community a great service. Congrats!
WOULD LIKE TO BRAG A LITTLE BIT ON WHAT HAS HAPPENED IN HICKORY, N.C.. WE HAVE A SMALL GROUP OF PARKYS WHO MEET THE SECOND SUNDAY OF EACH MONTH. ATTENDANCE HAS NOT BEEN BIG BUT DEC 4TH WE GOT A FULL PAGE WRITEUP IN THE LOCAL PAPER AND HAD SANDY NORRIS FOR A SPEAKER. ON DEC. 8TH WE HAD ABOUT 30 PEOPLE SHOW UP. WORD GOT AROUND AND TODAY, JAN, 12. WE HAD OVER 30 PEOPLE ATTEND. WE ARE GOING TO MOVE INTO A LARGER ROOM FOR OUR FEB. 9TH MEETING. WE HOPE IT CONTINUES TO GROW.
I want to clarify a statement I have made about chat rooms. We will always have our designated chat rooms The Porch, The CarePartners, and The Seniors...all of which are accessible by the drop down menu "Chatrooms" on the front page. These are mainstays of PLWP. Hope I didn't confuse anyone.
Hi Dan, It's 4:20AM and I know exactly what you mean. Would you like to help us? We really want to provide what is needed, but first we need a concensus of what that is. There are a couple of ways you could help. (1) On the front page of PLWP toward the bottom. There's a survey regarding what is wanted/needed in the way of a chat room. Complete the survey and encourage others to. (2) In all honesty, we would like to get rid of the pop up window but we didn't want to discard it if people were using it. If we could get a consensus of whether people want it or not...we would take it from there. (3) We would like this message board to be THE PLWP message board. By no means is this in competition with the MGH Forum, it is just a means of communication for PLWPs. The way we see it, the MGH Forum (including the one for PLWP) is more public than this board whereas this one is more private. As you can see from the hit counter next to the posting box, there are several people coming in here. Perhaps we need to do a survey as to what people are looking for when they come here. We are in the process of researching for the best chatroom to fit all our needs. We will find one and when we do, that will be the only chatroom that PLWP will manage itself. More than anything, we want the feeling of home back here at PLWP and we realize "communication" is the key. Any advice, suggestions, questions or just plain comments are wanted and needed about anything and everything to improve PLWP. We realize the need to progress and we want that too. Please let us hear from all of you, either here or if you want, email us a plwp2000@yahoo.com. Together we make a difference.
FOR SOETIME NOW I HAVE WONDERED WHERE TO POST A MESSAGE. I WISH WE HAD A "PREFERRED" SPOT. I DON'T CARE IF IT "POP UP" "MESSAGE CENTER" ETC. THERE SEEMS TO BE A NUMBER OF US UP IN THE WEE HOURS. A CHAT LINE WOULD NICE. I SIGN OFF APPROX.1:30 TO 2:OO AM AND AM UP WAITING FOR THE PAPER BOY AT 4:30 AM.
Just wanted to make sure you all know about Peg's new grandbaby (TnPeg). Here's the stats: Hollyn Renee Dixon A miracle from Heaven!!! Parents: John & Renee Dixon Grandparents: Darrell & Peggy Willocks January 8, 2003 (Elvis' birthday!!!) 7 lb 5 oz 19" long
This is a tremendous website. I have spent an hour or more just going from one thing to another. I hope to make some friends here. It is good to know there are other young people who have parkinsons and understand how I feel.
Ann, check out the drop down menu "Get Involved" and click on "Awards"...more to come about individual winners.
Lordy!! I just finished watching the Giants and the 49ers in the playoffs. WHAT A GAME!! I'm exhausted, feel like I played the game and I really didn't care particularly who won that one. I feel for the true blue fans! That was a real treat! Bye
Thanks for asking about the award and the award winner. We're in the process of writing that up and should have it on line soon. Some of our fundraiser's info can be found at http://www.plwp.org/sponsors.htm (drop down menu item "Get Involved", "PLWP Contributors"). One of the members also had a silent auction, our fundraising team held a 50/50 Raffle, one member has had a fundraiser for another organization and we have received a portion of the donations, etc. We need more involvement in fundraising and as time goes by that seems to be happening. PLWP is not about money but it enables us to fund the Benevolence program, the Cord Blood Donation program and other such endeavors. Thanks for asking Ann. Have a great day!
It would be nice to know what the John Lester Award represents and the criteria for receiving and also something about the person who won. Also could you tell us about fundraisig events that you have had.
It's 5:15AM and I can't sleep. It seems so quiet here at PLWP...almost too quiet. I've been scratching my head to see what we need and I think I've figured it out. I think we need each other. We need to be able to share stuff...like a new grandchild, a new baby, an old friendship or even a runny nose! We can go to the MGH PLWP or Parkinson's Forum for medical stuff or we can do that here too. But what do you say about letting this be like a real "Message Board" between family members. Think of it as leaving a message for a family member stuck on the frig. Let's give it a shot...talk it up...tell your friends! We've not lost that "lovin feelin"...we just needed a place to call home in cyber space! Love ya...later, Bren
An excerpt from an email from NIH to PLWP: "I'm sure your organization has heard of the recent finding of a 3rd causal gene for PD. It is called DJ-1 (Park7). This finding has a great impact on how we as scientists think about the etiology of PD, and it is vitally important to share this info with the PD community, especially the young onset PD community, who are well-educated and extremely interested in research. I've written article for the public (attached), which explains this finding and how science will now proceed. I'd be delighted if you included the attached article as a press release on your website." We were only too happy to comply. Just go to www.plwp.org.
Dear Folks: I wrote on the other line but no new names there. I have had PD for a while and rigidity. AM interested in exercise. Had a bummer CHristmas .the cat is sick, I have falling off at the end of the drug period, I have a detached retina that happened Christmas day. Help, send something inspirational. CHeers Di
Hey Gang....can someone e-mail me with the new address for the chat room????? I believe this is the old Dumpstergang group...Was never able to get into new room when changed fron Dumpstergang room..if not no biggie would like to have options on chat rooms....Haave a great day!!!!!!!!!!!!!vjledoux@yahoo.com
i am currently researching pd and pregnancy. if anyone with pd had a child after diagnosis, please respond to the following questions: *age at dxd *age at conception *where you continuing pd meds during pregnancy(list meds and dosage) *was your pregnancy normal *were your pd symptoms better or worse during pegnancy *how old is your child now *does your child suffer from neurologic problems(adhd, tourettes, language or learning delays, autism, cognitive processing problems, etc) *has pd compromised your ability to care for your child thank you for your responses!! e-mail to: kathyscorner44@yahoo.com
We have provided you a means to wish your friends at PLWP a Thanksgiving greeting on the front page of the website. Please feel free to use it.
Hello There.. Just wanted someone to talk to about PD. My friend was diagnosed with PD. If someone is out there for me to talk with I would appreciate it.. Tom O'Donnell if you see this please e-mail me at d_bezugley@hotmail.com but if anybody else would like to e-mail me to.. Would like to understand PD a little more.. Thanks again Darcy
Chosh you have been in my thoughts. Why not try a different agonist. Remember the song Red Roses for a Blue Lady, or Everythings coming up roses. Today I send you a yellow rose of friendship in my prayers via long distance here in Sweden. Email please if you want to chat, didnt know I would have pc access. Love ya.
First let me introduce myself my name is Tom O'Donnell and I have had PD now for over 14yrs. I was diagnosed at 26 yrs,old. I am now 40, needless to say I have a surplus amount of PD stories to tell. I have had a Pallidotomy and a Thallimodomy in 1993 and 1994. I am currently retired from the New York State dept. of corrections. My new job is VP of the Parkinson's Wellness Group of Western New York Inc.(PWG). My partner and President of the PWG is Rick Lipka, a recent DBS patient. Rick is 42 and has had PD for the better part of 7 yrs. Together we have quite a collection of stories and testimonials of our surgeries and the paths in which PD has led down. Our stories are at times inspirational, emotional, sometimes humorous, but they are always interesting. We realized our message is an important one and there is a need for others to hear it first hand. As of Oct. 15, 2002 we are making ourselves available for speaking engagements for PD groups across America for only the cost of our flight and our stay and a donation of your choice to the National Parkinson's Foundation. This can be as small as $100 dollars. If you are interested, please call the PWG at (716)684-0650. Sincerely, Tom O'Donnell
Chosh, last year I was taking Mirapex, Sinemet and Eldyprel and i went off the Mirapex for a month. Boy was that a mistake for me. When I was first diagnosed with PD, my neuro put me on all three meds almost the same rime. So for the past 5 years, I kave not known what one did over the other. When I went off the Mirapex, I experienced a real decline in functioning, much slower movement and boy did i become depressed. The neuro put me on another PD med Comtan which did nothing for me. The very day I went back on the Mirapex, I saw tremendous improvement in my ability to move around. The down side to Mirapex is that I don't have gorgeous legs (not that I ever did)....my ankles look like stumps. But I had to way the pros and cons. Hope this sheds some light on your question. Hope you can read this......don't have glasses on. take care.
Come one come all to this special Memorial Golf T. in N. KY. on Oct. 12th. God Bless and hope to see you there. See information on PLWP Homepage!!
Has any experienced a SUDDEN progression of symptoms?
Chosh, I'm sure you have other things on your mind right now, and this is propably not the time to discuss your questionabout going off agonists and still taking Sinemet, but when you are ready to focus on this I can talk to you about it.
Chosh, I'm sure you have other things on your mind right now, and this is propably not the time to discuss your questionabout going off agonists and still taking Sinemet, but when you are ready to focus on this I can talk to you about it.
Curiosity question. Has anyone here who is on Sinemet and an agonist ever tried to do without the agonist? What happened?
Coca-Cola Presents MUHAMMAD ALI IN PERSON FOR THE GREATEST GOOD - in Toronto, Canada Oct.20th TORONTO ARGONAUTS WILL HONOUR THE 'ATHLETE OF THE CENTURY' WITH A STAR-STUDDED TRIBUTE AND NATIONAL FUNDRAISER IN SUPPORT OF PARKINSON'S RESEARCH Parkinson Society Canada and Parkinson's Research at The University of Toronto are beneficiaries TORONTO (September 4, 2002) - Garth H. Drabinsky is proud to announce that the transcendent athlete, activist, humanitarian and icon Muhammad Ali will be honoured at the Toronto Argonauts home game versus the Ottawa Renegades at SkyDome on Sunday, October 20, 2002. In association with Coca-Cola Ltd., Ali, the three-time world champion boxer, will be in attendance for this remarkable event and national initiative entitled MUHAMMAD ALI - IN PERSON FOR THE GREATEST GOOD. The game will feature Canadian and international sports luminaries, politicians and celebrity guests participating in a national fundraiser for Parkinson's research with proceeds supporting Parkinson Society Canada and Parkinson's Research at The University of Toronto. "On May 14 of this year, I pledged, on behalf of the Toronto Argonauts, at least one unique pre-game and half-time event focussing on a high profile charitable fundraising opportunity that would resonate throughout the community and beyond," said Mr. Drabinsky. "I believe that this particular event fulfills that promise - and at the same time will galvanize Canadians to support a vital charitable cause - the fight against Parkinson's." "Through the special global partnership Coca?Cola has with Muhammad Ali, we were able to bring him to Toronto for this once-in-a-lifetime event," said Mr. Ed Shartar, President and CEO, Coca Cola Ltd. "We are very proud that this special appearance by Muhammad Ali will assist the Toronto Argonauts in raising funds for Parkinson's research and bring critical awareness about this debilitating illness." Beginning at 9 p.m. on Friday, October 18, with TSN's Friday night CFL broadcast, CBC's Saturday afternoon CFL game, TSN's Saturday night boxing coverage and continuing on TSN all day on Sunday, October 20, programming will include segments of documentary footage on Muhammad Ali and flowing tributes from friends and admirers - from athletes, celebrities, politicians and the public at large. It will also highlight Parkinson's research and assist in educating the public about this progressive neurological disorder that affects nearly 100,000 Canadians. On October 20, the main event will take place at SkyDome beginning several hours before the 4 p.m. kick-off. Ticket holders will be invited to an exclusive screening of documentary footage on the life of Muhammad Ali. A stirring pre-game program and half-time tribute will include performances by celebrated musical artists, appearances from attending sports luminaries, celebrities, politicians, and Canada's corporate leaders. The half-time event will conclude with a very special presentation to be made at center field to Muhammad Ali. At all times, throughout the weekend, phone and online pledges will be encouraged. An area in the lower stadium stands at mid-field will be reserved for all the special guests to man the phones and answer pledge calls from across the nation. Roots will produce a line of limited edition merchandise, subject to approval by Muhammad Ali, commemorating this unique Canadian tribute. All those making a minimum pledge will receive a selection throughout the weekend from the commemorative merchandise. "Mr. Ali's willingness to come to Canada and build awareness of and support for Parkinson's personifies the courage that Canadians living with Parkinson's demonstrate daily," said Ms. Meredith Saunderson, National Chair, Parkinson Society Canada. "We are very grateful to be a key beneficiary of this initiative." "As Canada's leading research university, the University of Toronto is proud to be in the ring with Muhammad Ali and Parkinson Society Canada in finding a cure for this disease," said Dr. Robert Birgeneau, President, University of Toronto. "Our internationally known Centre for Research in Neurodegenerative Diseases has already made several fundamental discoveries that are helping us understand the biochemical processes involved in Parkinson's disease. Mr. Ali's decision to promote awareness and education in Canada is particularly gratifying." Ticket prices for this game will include a $10 surcharge which will be part of overall contributions to Parkinson's research. Each ticket holder will receive a limited edition commemorative poster upon exiting the stadium on game day. Tickets are available by calling Ticketmaster at (416) 872-5000 or at www.ticketmaster.ca or at SkyDome box office located at Gate 7. Coca-Cola Ltd.(CCL) is an indirect wholly owned subsidiary of The Coca-Cola Company, the world's largest beverage company and the leading producer and marketer of soft drinks. CCL is responsible for developing new brands and enhancing existing brands specifically for Canadian consumers, which includes advertising, marketing and packaging innovation. Current Coca-Cola beverages include: Coca-Cola Classic, Vanilla Coke, Diet Coke, Diet Coke with Lemon, Caffeine-Free Diet Coke, Cherry Coke, KMX, Sprite, diet Sprite, Mello Yello, Fresca, Barq's root beer, Barq's diet root beer, Barq's cream soda, Nestea iced teas, Mad River juice beverages, POWERADE sports drinks, DASANI bottled water, and Planet Java Caramocha and Javadelik iced-coffee beverages. This is the same weekend as our 3rd Annual Parkiepalooza Dinner/Dance/Auction Fundraiser on Sat. Oct 19th. in Markham, just north of Toronto. More information can be found on the PLWP Website Homepage. It will be a great weekend to be in Toronto!! I hope to see you there! :) Ryan
One more thing, do a search on Yale estrogen women Parkinson I did one search with those three key words and lo and behold...more info than I imagined.
One more thing, do a search on Yale estrogen women Parkinson I did one search with those three key words and lo and behold...more info than I imagined.
Brigitte, I've been taking 2.75 mg Premarin for 15 years. About a year ago, I tried titrating down and stopping it. I was sick, my pd was worse than ever, my emotions ran rampid etc. Needless to say I now take my regular dosage. A Yale study last year proved that more than 30 days with very low estrogen can give one PD. Maybe we can chat about this sometime. I believe that's where my pd came from. My email is btucma@aol.com Together we make a difference, Bren
Brigitte please send me your email address. Deb Setzer sent me a document on this subject that I just gave to my doctor yesterday. gunnyswife68@yahoo.com
Hi, my name is Brigitte. I wondered if any of the ladies with P.D. had ever taken hormone replacements for a number of years and then stopped. If so, did you feel really sick? Please describe how you felt. I have just stopped taking estrogen and progesterone and I feel terrible. I'm beginning to get worried. Has this happened to anyone?
There's a "9-11-01 In Remembrance" thread on the PLWP Forum on MGH BrainTalk if you would like to post. The direct url is http://neuro-mancer.mgh.harvard.edu/ubb/Forum207/HTML/001191.html
To all of us who have PD - words of encouragement written by St. Francis de Sales: "Do not lose your inward peace for anything whatsoever, even if your whole world seems upset. Commend all to God and then lie still and be at rest in God's bosom. Whatever happens, abide steadfast in a determination to cling simply to God trusting in God's eternal love for you."
To all of us who have PD - words of encouragement written by St. Francis de Sales: "Do not lose your inward peace for anything whatsoever, even if your whole world seems upset. Commend all to God and then lie still and be at rest in God's bosom. Whatever happens, abide steadfast in a determination to cling simply to God trusting in God's eternal love for you."
I fight this disease Tis the devil called PD I prayed to my God Who I thought was not listening to me Then I found a group called PWP Now I realize good friends have been given to me Acceptance of the things we cannot change is the most important thing. It is thru acceptance that we parkies can only move. Meds take care of the physical move, but the acceptance of PD is what lets us move on.
Amy please email me. My address is below in a previous post to Scott
hi my name is amy and i am a 44 year old parkie trying to keep a positive attitude but it is hard! am wondering if anyone has any advice for me? the dr's think i have had the beginning symtoms for 8-10 years (rigidity in older pictures all on the left side).
ScottandCE and Racinbear could you send me your email addresses gunnyswife68@yahoo.com
PRESS RELEASE --------- Forwarded message ---------- From: "Kathrynne Holden, MS, RD" <fivestar@NUTRITIONUCANLIVEWITH.COM> To: PARKINSN@LISTSERV.UTORONTO.CA Date: Mon, 26 Aug 2002 19:12:39 -0400 Subject: PDF / NPF merger Message-ID: <3D6AB5E7.5090201@nutritionucanlivewith.com> TWO LEADING PARKINSON DISEASE GROUPS AGREE TO PROCEED WITH MERGER CREATING WORLD'S LARGEST PARKINSON ORGANIZATION New Organization Will Increase The Potential For Finding a Cure and Improving Lives MIAMI -- August 26, 2002 - The Miami-based National Parkinson Foundation (NPF) and the New York City-based Parkinson's Disease Foundation (PDF) have agreed to proceed with the merger of the two foundations. The strategic move by two of the pioneering organizations in Parkinson's research heralds a new and promising era for people with Parkinson's. The new organization, which will be known as The Parkinson Foundation, Inc. (TPF), will combine resources for scientific research, clinical services, education, and patient outreach and support. It will be co-chaired by Nathan Slewett, the chairman of NPF, and Dr. Lewis P. Rowland, PDF's president. Page Morton Black will serve as honorary chairman, and Herbert C. Zemel will be the president. "Through this union, we are creating the largest organization focused on researching the cause and the cure for Parkinson's," said Dr. Rowland. "The beneficiaries of this merger are all people with Parkinson disorders and their families, worldwide. This merger brings together two of the nation's best Parkinson's research and support organizations to form a network of information exchange in leading medical institutions such as the Neurological Institute of Columbia Presbyterian Medical Center in New York, Rush-Presbyterian St. Luke's Medical Center in Chicago, and the University of Miami. We hope to hasten the day when this deeply disabling and destructive condition can be relegated to the history books." "The merger will create the leading comprehensive Parkinson organization in America," said Mr. Slewett. "It ensures that we continue to grow a national network of research, treatment, and support centers. Our ultimate objective is to save more lives by educating more people and reaching out to untapped groups who are in need. We will offer people with Parkinson's and their families the best treatment and educational resources and support available, while actively fighting to eradicate a disease that currently plagues as many as one million Americans and perhaps 15 million people worldwide. Our combined experience and resources will go a long way toward achieving these goals." The organization will have annual contributions in excess of $20 million, which will be used for research grants, patient and caregiver services, education, and public advocacy. Specific programs will include: · Research and training grants to support leading research centers and individual scientists. · Clinical services and educational programs. · Liaison with the National Institutes of Health to encourage and coordinate new research initiatives and fund pilot research projects. · Advocacy for increased public support of programs designed to find the cause and cure of Parkinson's and to assist those who live with Parkinson's. · Services designed to improve the quality of life for people with Parkinson's and their families, including support groups, internet information services, publications and support literature, clinical referrals, and educational symposia. Together, over the past five years, the two organizations have awarded a total of more than $30 million in grants for research in Parkinson's disease and have spent almost $50 million in support for services, education, and advocacy. This merger represents more than a linking of the futures of two organizations; it is a major move toward long-needed unity in the Parkinson's community as a whole. Indeed, the new organization expects to forge strong productive alliances and joint ventures with other Parkinson groups, including the Parkinson's Action Network, the Parkinson's Alliance, the American Parkinson's Disease Association, and the Michael J. Fox Foundation for Parkinson's Research. Pending consummation of the merger, NPF and PDF will be collaborating closely on programs, fundraising, grant procedures, and Board activities. The merger -- which will require, among other things, IRS approval of tax-exempt status for the new organization -- is expected to be consummated early in 2003. The executive staff of the new foundation will be headed by Robin Anthony Elliott, chief executive officer, based in New York City, and by Jose Garcia-Pedrosa, chief operating officer, based in Miami. These positions correspond closely with those that they currently hold in their respective organizations (PDF and NPF). About the Two Organizations The National Parkinson Foundation, a world-class institution, was founded in 1957. NPF sponsors 62 Centers of Excellence throughout the world, most of them affiliated with leading medical schools, universities, and research centers. It has dozens of chapters in the United States and abroad and almost 1,000 support groups throughout the country. NPF's publications, in two languages, are among the leading sources of Parkinson-related information for the public, and the NPF website, www.parkinson.org, includes, in addition to articles and information that is constantly updated, several interactive columns such as Ask the Doctor, Pregunte al Doctor, Ask the Dietician, and others. NPF awards several millions of dollars in research grants and for use in patient services each year. NPF's international headquarters are in Miami, Florida. Parkinson's Disease Foundation, also founded in 1957, was created by William Black, a founder of the Chock Full O' Nuts Corporation, to promote research of the highest caliber at Columbia University and elsewhere. His widow, Mrs. Page Morton Black, PDF's Chairman, continues his legacy by agreeing to serve as honorary chairman of the new organization. Over the years, PDF has provided education and support to a constituency of people with Parkinson disorders that numbers more than 100,000. It has provided specialized training in Parkinson's disease and other movement disorders to young scientists and clinicians from around the U.S. and around the world, most of whom have gone on to create programs in movement diso rders at their own institutions and elsewhere. The organization is based at Columbia Presbyterian Medical Center in New York City, and, since a merger with the Chicago-based United Parkinson Foundation in early 1999, maintains a major presence also at Rush-Presbyterian St. Luke's Medical Center in that city. For more information on the Parkinson's Disease Foundation, visit www.pdf.org. -- Kathrynne Holden, MS, RD "Ask the Parkinson Dietitian" http://www.parkinson.org/ "Eat well, stay well with Parkinson's disease" "Parkinson's disease: Guidelines for Medical Nutrition Therapy" http://www.nutritionucanlivewith.com/
hi i am new on here and i been haveing problems on finding something. I have had 22 open hearts surgerys and I have diabetes. I was just wondering if anyone on here would know were i could look up the meaning of medcines that i take or what they are surppose to do for me. I am a 20 year ols female that lives in texas if you would like to help me or have any ideas for me that might help please conact me at Ssstngrlslvr@aol.com please. Thank you c.summers
SEAN - I READ YOUR MESSAGE AND I COMMEND YOU ON YOUR COURAGE AND STRENGTH. I FELT I WAS IN A DARK TUNNEL WITH NO LIGHT. I WAS CONTEMPLATING SUICIDE, BUT I COULD NOT HOLD THE GUN STEADY. I KEPT ASKING WHY ME, WHAT DID I DO. AND LIKE YOU I FINALLY ASKED THAT QUESTION TO THE LORD ( WHO I HAD NOT SPOKEN WITH IN 30 YEARS) AND HE SHOWED ME THE QUESTION WAS NOT WHY, BUT WHAT GOOD CAN I DO WITH IT. HE GIVES ME THE COURAGE AND STRENGHT TO GET OUT OF BED EVERYDAY, TO DO THE BEST THAT I CAN FOR THAT DAY, TO PURSUE THE ANSWER TO THAT QUESTION. I AM PYSCIALLY WORSE THEN I WAS A YEAR AGO, BUT I AM MENTALLY AND SPIRTUAL STRONGER THEN I HAVE EVER BEEN. I HAVE A LOVE FOR LIFE I NEVER HAD BEFORE AND FREELY TELL PEOPLE IT IS THE LORD THAT HAS GIVEN THIS TO ME. KEEP THE FAITH YOU ARE NOT ALONE
Denial, anger, pity, and fear are just a few of the emotions that ran through me as I sat dazed in that small office on a quiet spring day that will forever be replayed in my mind. As my neurologist informed me along with my parents of my new “gift”, I stared helplessly into each of their eyes as if in some telepathic way comforting them. At the same time I began telling myself this was some kind of medical error that would soon be discovered and I would be sent on my way. Unfortunately for me, my neurologist was one of the best in the nation and her patient count at that time of over 1200 patients, which made the odds of an error about the same as winning the lottery. Could she have been that wrong that many times? I think not but I was reaching for anything. I could feel my body go numb and the twitch in my left hand for that moment was obscured by the sharp pain of fear that radiated across my body. Those two words she spoke that morning will forever leave there stamp on my soul as I now was given a new lifetime partner, Parkinson’s Disease. It was as if at the exact moment my life to that point began playing itself back to me in full detail emphasizing those last few months leading up to the discovery. Suddenly my mind skipped forward to a bright sunny day on a grassy front yard off a beautiful yet comfortable home. In the front yard I found myself playing with the three most important people in my life, Nicole and her two daughters Mikayla and Savannah. These three were my world and their presence in my life was my being. It wasn’t a surprise that they would enter my mind to in some way take away the fear, but instead I became frantic with the thought that I would not be involved in the playing rather sitting helplessly on the porch. It was this vision that created a chain reaction, and for the first time in a long time I could feel the tears begin to slide down my cheek. A man once so brave and fearless, I had now become weak and afraid by the thought of loosing a normal future with them. This for me was the hardest thing to swallow that morning, and will forever be. As the doors to the elevator closed, I could feel the strength of my parents engulf that tiny space and my mothers words of encouragement began to echo through my mind. I was at that moment I stepped out into the sunlight, a “NEW “ man. Unfortunately this new man did not bring with him all the positive attributes one may have given such a gift, but rather a few that would later bring me much pain. I’m not sure when I began to feel helpless and empty, as I was numb for quite some time, but I do know that with these emotions came a feeling I would never wish upon anyone. Loss of control, within your mind and body is one of the most horrific transformations one could ever go through. It is as if suddenly you have given over yourself to be ran in a fashion which all along you realize is not right but are unable to stop. I became depressed, angry, irritable and afraid, while all along still denying I was sick. I began to look around at others jealous of them for being healthy and happy, while I drown helplessly into a sea of depression, all the time telling myself I was too strong to be depressed. “WHY ME?” became a broken record I asked myself over and over, not understanding how a 30 year old male who worked out, ate right, no drugs and didn’t smoke could be given such a life term sentence. Its not fair dammit, I told myself over and over, this isn’t in my plans, but constantly I was reminded it was as my left arm would begin to shake. My loss of control feeling was soon consuming most of my days and I found myself arguing with Nicole for no other reason than simply, “YOU DON’T UNDERSTAND”. This phrase had become a constant annotation every time I began to feel sorry for myself. Inside my head I felt helplessly trapped knowing it wasn’t right to be taking it out on those who loved me simply because they were close and now my loss of this control I will regret the rest of my life. What I know now and didn’t understand then was this, I didn’t have the disease, I wasn’t dealing with it, WE WERE. I was so caught up in self pity that I didn’t realize I wasn’t the only one battling this disease, I had someone right beside me all along just as afflicted as I was. I had a true friend standing there holding onto my hand and my absence of understanding cost me to let go of it. I thought I was so strong that I alone could take the entire burden, in doing so I turned my back and two of the most important people in my life, God and her. I soon found that I consuming into my job and traveling in order to hopefully stay away from those who cared so they would not have to deal with my constantly changing mood swings. I think for some, including Nicole, thought I just didn’t want to be around. It was at that time while spending countless nights in a hotel room I found myself embarked on a journey that has literally cost me everything important in my life. I became addicted to the Internet spending countless hours in chat rooms trying to be someone I wasn’t in order to confirm my identity. With these chat rooms came the porn and smut that can become a type of drug or alcohol, taking away the pain and confusion. In this world I was not a person with a disease but rather a well-fit man with a future who was still desired and wanted. Soon I was spending all night talking, chatting and fantasizing in order to relieve myself from the real world I had come to hate. I constantly reminded myself that Nicole would not stick around much longer knowing she would have to deal with this the rest of her life and soon I would be alone even more. For me it was becoming an excuse for doing something I knew she didn’t approve of, but didn’t care knowing she would be gone anyway. I was setting myself up for failure the whole time and didn’t even realize whom I was hurting in the process. Many nights I left her worried at home not able to reach me because of my addiction. Quickly making excuses for my absence from calling her to tell her I was all right. I was stuck in a constant cycle on the computer all night and unable to move out of bed for most of the day. My work was suffering and I was finding myself passed out along roads from exhaustion of not sleeping. I had let myself become entangled in a fantasy world that I became addicted to more each day. When I did reach home I was usually so tired that much of my time I slept and was unable to do anything constructive with Nicole or the girls. The worst thing of all is that I ruined the trust I had swore never to brake between her and I and had become a man full of lies and void of integrity. I had become consumed by a world I had created in order to escape my own. How could I have been so stupid? I often wonder how and why I allowed this to happen, but I stand before you a man with no excuse other than I was sick. It brings no comfort but does bring some understanding when I was told the other day that the number one reason for most marriage counseling today is due to some type of problem revolving around the Internet. Soon our arguments grew more consistent until finally I did something which I swore never to do, I turned my back on the one person who stood there all along giving me the support that I was to deaf to hear. Sure she reminded me daily she hated the job, but instead of realizing it was because she wanted me safe at home with her and the girls, I took it as a personal attack on my career. I thought she was saying my job wasn’t good enough and in my anger I decided to take a macho approach. “ Nobody tells me what I do for a living” along with “I’m a grown man” were two comments I remember making in response to her questioning my job. Looking back now I know that unfortunately someone does tell me what to do, GOD, and no I wasn’t a grown man but rather a lost one. In turning my back I thought I was making the stand that I was the man of the house and that I would do whatever it took to make a living rather she liked it or not. In being so ignorant I had walked away from her in a time of real need and all alone to face a huge challenge, her pregnancy with my child. How her pain must have felt at that time I will never know. It must have been huge, for I now must face it too and it is the worst I have ever felt. I did straighten out long enough to announce in a hall full of customers, co-workers and associates that I was about to be a father. It was amazing that for the first time in awhile was proud of myself, imagining the kind of father I would be. I do admit I was still frightened that this child would grow up with a father who would be to sick to do the things with them I wanted to do. Unfortunately I will never know, for God decided to take back this baby before birth, for what reason I will never know. I sit here still shocked and confused why, but seek comfort that one day I will be with them in heaven. It is not for me to question all things in life, but I do pray every night that it was for reasons that saved Nicole from complications or pain. I have not lost love for this child, nor will I ever, for this was part of me that will never fade away. I continued on my roller coaster existence trying to still comprehend where my life was taking me, all long staring at a giant hourglass of my life paranoid when the last grain would fall. I now was caught deep in a vicious web of panic and fear, trying to pull away from all those around me who cared. I felt that it was better if they didn’t have to “deal “ with me, and with my disappearance soon they would forget. I began loosing touch with reality and self-pity had become my trusty companion. It was those nights I sat empty and emotionless at home that I found solitude watching the girls play that I remember the most. “ How lucky they are” I would tell myself, they have no worries and do not have to go through this pain. Later I would realize that it was these moments watching them I was pulled back into reality and soon I came to understand “how lucky” I had been to be a part of their life. It was in there eyes that I saw the peacefulness and a glimmer of hope. In their hearts I felt the their love for life that helped me make it to the next day. I soon found myself in another unexplained battle with Nicole, I’m sure brought forth by my ignorance and self doubt, but this time she had turned her back on me and rightfully so. It was during this time in looking back that I should have agreed with those around me to seek help, but I was far to “strong” for that. I don’t need no damn shrink or any pills, I’m far too strong. I’m an Olson dammit and a grown man, not some wacko. I couldn’t have been more wrong in all my life. God had sent his message to me in a giant overnight envelope but I was too stubborn to open it. The message I’m sure was this, nobody in this world is strong enough to face that which brings you to the point of self doubt and loss of control within your own mind. Even with ignoring this, Nicole gave me a second chance showing her commitment to never give up. How humble she was to do this even though I was the one who had the problems. We decided to move to California, a mutual decision we both felt would help to make a “new” start and hopefully lead to a life long commitment. Once moved in I became very weak and my symptoms began to take command of my body no matter how much medication I took. Now I was in a state of not only complete panic but also for the first time in my life I was ready to give up. My days were filled with little activity, some days unable to get off the couch and unable to do the things I wanted to with the girls. They had become in some ways so understanding even though they remained trapped within our home trying to keep themselves occupied. I now know that these precious moments we lost together will never be able to be recovered, and for that I am truly sad. I could have learned so much from them, as they were to me two of the best teachers of how to live life a guy could have. In them I realized how even the smallest things in life could make you laugh. They were my mentors and I will forever hold their teachings deep inside my heart. It was during on night I fell asleep on the couch, that I awoke to find myself standing in their room. The light from Mikaylas TV danced across the room showing the two innocent and restful girls fast asleep in the their beds. As I stood watching them the tears began to flow, soon followed by a feeling I’m still not quite sure to how to explain. It was at that moment that I came to terms with what I had become to them and how unfair it was to put them through it. What had I become? Will they ever forgive me? Knowing I needed to separate myself to get help was my revelation but how I went about it was my destruction. I pushed Nicole to the point she could not deal with me any longer, driving her make a rash decision to go back home. I was able to fool myself into believing that I was happy, now they wouldn’t burden me and they wouldn’t have to put up with me. I now know that I was consumed by pity and so full of self doubt that my only reason for existence was to crawl deep within my own shell so I could be alone to deal with my fate. I had been able to tell myself that this was what Nicole really wanted and no matter if I used words to hurt her or not, it was going to be for her own good. My inner struggle fought me clear up till the morning I called her at the train station, as her and the girls were leaving. So much of me was wanting to head straight there to stop her, but I denied my heart and kept on believing it was setting her free, now she didn’t have to face the pain any longer. Alone I sat for weeks in a half empty house filled by darkness from the closed shades, staring into the blackness of a world I had created, void of meaning or hope. It was for me a world that fed off my pity and anger, consuming every ounce of pride I had left. It was if I had been literally cut open to have everything fall out of me leaving nothing but an empty shell. I had become my own worst enemy; a constant battle raged deep inside me trying to get me to quit. “ See I knew it” I told myself over and over, “I knew she would leave”. Who wouldn’t, I had pushed so hard to upset her to that no person in his or her right mind would have stayed. Alone, a feeling that can only be described as one of the most gut wrenching experiences I have ever had. I hadn’t just lost her and the girls, but I had lost my best friend as well. A friendship of many years in the making, and soon the memories began acting themselves out on the blank wall in the living room. I now was beginning to realize what I had done but the big wake up call was soon to take place. Within my confine I began to slowly take back control of my mind focusing on the acceptance of my disease. I had much time to begin thinking, something I hadn’t done in quite some time. Sure I was always thinking, but not like this. It was different, as if someone was doing it for me, I now know someone was, GOD. I’m not sure when he first tried talking as I’m sure he was getting tired of the busy signal he received, just like those who tried calling me day after day during my internet sessions. Then one late night for no particular reason at all, I slowly closed my laptop leaving my fantasy world for the last time. I now stood before him ready to accept my “gift”, not as a punishment but rather as a reward. I had felt for the first time a calmness come over me as if all those who cared were standing before me to be a part of this acceptance. And placed in the front row were two beautiful girls and one lovely woman, the true reason of my existence. I slowly walked over, grabbed the blinds and opened them up to expose the early morning light, I never wanted to close them. Was this some catastrophic event unexplained by any sense of the imagination? I think not, simply god tapping me on the shoulder telling me in his subtle way, “its time”. Time to let go of the pain that had become so unbearable, almost as crippling as the disease itself. I was ready to accept myself for who I was, a man with a disease, not a death sentence. I was someone who had been chosen in some way to better not only myself, but also those around me. A man destined to love unconditionally, living not for fame or fortune, but rather for the love of a family. I had come to realize that success is not measured in dollars, but rather measured by those we touch and how we touch them. I came to accept that for me my success lies deep within my heart, one that never quits caring or loving. We live in a world constantly filled with suffering and pain, but never void of hope. It is this hope that we must look for inside each of us to grow stronger in order to overcome our fears. My hope was first to go during my denial, not by choice, but rather buried under an enormous pile of pity and fear. Pity for me was easy to see, it was the “why me?” of my every waking moment. Fear became my shadow always there and always growing bigger every time I tried to hide from it. My fears have taken from me just about every thing I held close, including three of the people I loved the most. One thing it will never take control of is the biggest part of me, my heart. It is not until one faces their fear that they can become at peace with themselves and truly love not only themselves but also those around them. Am I completely a new man? I wish I could say that I am, but I do know I am growing every day and still learning to deal with my fears. I have learned to let go of those things that I have done in the past in order to live for those great things I will experience in the future. What has changed is my outlook on life and realizing to take each day for what God gives me as a challenge in order to continue to grow. It is my hope that someone reading, even if its only one person, will come to understand their fears and find the strength and courage to fight them. I also hope that they will realize they aren’t in control before they, like me, pay the ultimate price and loose the very thing that I held so dear, TRUE LOVE. A love so strong that even though in my darkest of times I tried to defend but did all the wrong things to try and save it. I stand before you now a humble man stripped of just about everything I ever wanted, telling my story to those who read it. I tell it not to make excuses for those things that cannot be undone, but to hopefully save someone from the loss and pain I have brought upon myself. My name is Sean Olson, and I have a degenerative disease that although is slowly taking my mind and my body, it will never take my heart. Some may say that the brain is the most important part of the human body, but I disagree. For it is within matters of the heart that true strength lies and the love for another that can conquer any disease. To Nicole, Savanah, Mikayla, God, and those who have been there all along, I regretfully say sorry for what I was, but Thank You for helping me become the “New Man” I have become. I love you all with all I am and all, which I will ever be.
Things are really heating up in central Illinois and I don’t mean just the 90+ degree heat!! Right on the heels of our very successful “Shake, Rattle & Roll” weekend, we have several events that are coming up. On Thursday, august 8th, we plan to present a check for $2,000 to Richard J. Weber, Ph.D, a research scientist at the University of Illinois College of Medicine, Peoria campus for use in his studies dealing with the effect of activated leukocytes on dopamine producing cells in parkinson’s affected subjects. This donation (an increase of 60% from last years’ check), is part of the $15,000 which was raised during the Shake, Rattle & Roll weekend held in May. Another check for $2,000 was sent to PLWP and the remaining $11,000 went to the Parkinson Alliance for research. After the presentation, we will be holding a press conference to announce our plans to hold a fund-raiser for U.S. Representative Lane Evans. For those of you unfamiliar with Congressman Evans-he represents the 17th District of Illinois and is the ranking Democratic member on the Veteran’s Committee. His work for the working people and for the environment is well known. He also happens to have Parkinson’s disease. The fundraiser will be held on Sunday, August 25th, from 1 pm-3 pm at Kelleher’s on Water Street in Peoria. Pat Sullivan, the owner of the upscale Irish Pub & Restaurant will provide appetizers and a great setting for our event. We are excited to announce our guest speakers for this day; they are: Anne Udall-the daughter of Congressman Morris K. Udall and quite active in Parkinson’s projects and Don Schneider-the radio personality from Clinton, Iowa who spoke so eloquently before the Senate subcommittee with Lonnie Ali and Michael J. Fox. Also hosting and helping with the introductions will be Mr. Michael Bryant-the CEO of Methodist Medical Center. We have had an overwhelming response thus far, showing lots of interest. I would also like to share with you that I have been selected as one of this year’s 25 Women In Leadership for central Illinois. I am very proud and feel quite humble to be in the company of such wonderful, accomplished women. If you are in the area or plan to visit for this fundraiser, please let me know so that we can get together for some fun, sharing and maybe a sip of Irish Cream!! Thank for listening, your central Illinois on the go reporters, Joan Blessington Snyder and Holly Angus
Nan, I imagine your tournament is over...it is getting on towards 8 pm your time. But I hope you are still celebrating a great success. Now you can take some time off maybe? C'mon in, the water is fine.
50,000 HITS ON PLWP.ORG...WOW what a trip it has been too. What started out with 23 members of a small website is now registering over 50K...and let us not forget we had 30K plus when Carol (pwnkle) re-did and brought the website into the 21st century...so we're actually a little over 80K. Ata gal, Carol!!!
PROOF...WRITING YOUR GOV OFFICIALS IS NOT AN ACT IN FUTILITY For those of us skeptics regarding the value of writing to our government officials, the proof is in the pudding. A few months ago I wrote a letter to every congressman and senator on the hill. I was livid about the thought of taxing pharmaceutical drugs and wrote quite a lengthy email. Today, I received a call from a representative of the Democratic Party asking for more detail. I was asked to give specific examples. Instead I gave them the phone numbers of a couple of our members. Apparently there is a debate on the high cost of medications next week. I am still astonished, amazed, impressed....etc. etc. etc. to have received a phone call based on a particular email. So, keep those cards and letters goin to the hill...apparently they are being read. Together we make a difference, Bren
I would like to wish a very special lady and good friend (maybe not now ) a happy birthday for tomorrow July 10th!! Congratulations to this KY lady who has given her all to fighting parkinson's disease and being such a stong supporter, advocate and fundraiser for PLWP and the Parkinson's cause, in general. Have a great day on this "Special Birthday", dear friend and I look forward to helping you coordinate and host that 3rd Annual Ky Golf Outing this October!! Best wishes, dear friend. ((hugs)) :) Ryan
Two things: A special email was sent to all PLWP members regarding the RCE (a routine email from us to the membership). If you did not receive it that indicates either your email has reached it's maximum or we have the wrong email address for you. PLEASE PLEASE PLEASE write us at plwp2000@yahoo.com and give us your name and email address. Secondly, the deadline date for reservations to the PLWP Beach Gala has been extended to July 15. Please go to link to the gala on the front page of the PLWP (www.plwp.org) and send in your reservation. In addition please email Jane Martha at janemartha55@yahoo.com that you are doing so. If this deposit has caught you at a bad time, talk to Jane Martha...PLWP will make the deposit for you and you can repay it when you can.
Here's a new site that's a bit different. Peg (tnpeg) and I developed it and it's purpose is to provide a place to be creative and communicate ideas. Take a look at it when you have time and please give us some feedback there. http://www.pwnkle.com/pnp
Best Wishes and Happy Celebrations to all our southern neighbors and friends on this 4th of July!! Happy Independence Day!! Sincerely :) Ryan
From the Advocacy Team - Understanding the science of SCNT or therapeutic cloning, and its relation to stem cell research generally, is important for all people, and for people with Parkinson's in particular. We have just added "A Guide for The Rest of Us" that attempts to explain in clear and easily understandable language the nature and use of scnt procedures in stem cell research. We hope that members find it helpful.
Let the good times begin... Important Info - PLWP Beach Gala 2002 accessible on front page of website. Just click on the seashell!! We did a mass mailing of this information today. If you are a member and you did not receive this email, chances are we have an incorrect mailing address for you. If this be the case please email us at plwp2000@yahoo.com so that you don't miss important communication. Together we make a difference, Bren, Nan and The Events Team
They're looking for pwps with dyskenesia to participate in a new drug study there. Here's the info about it. http://pwnkle.com/nih.htm
We're always complained about prescription meds (and rightly so!) Aj found this URL ... let's join the fight! http://www.fairdrugprices.org/fact1.htm
Hello all ! I'm new to this forum. I heard about this site from the M J Fox Foundation and would like to make myself known. I recently graduated with a BSC in Management from Santa Clara University. Glad to say I landed a job before graduation ! I am 22 yrs old now and I would very much like to meet someone who is close to my age with PD; I feel this would be a rewarding experience. hugser@aol.com
I just want to thank those of you who responded to my questions regarding Michael J. Fox. It was great to hear your opinions, and I really appreciate your willingness to discuss the issues with me. Best of luck to all of you!
Nan, I was diagnosed one year ago too. Would very much like to hear your story. Email me pkell@swbell.net
Hi I was diagnosed with PD one year ago Have had remarkable improvement in the past year would like to share my story with others Nan
Our Tuesday "afternoon" chat was great today. We shared experiences and ideas on how we could contribute to the cause. There's a Tuesday "night" chat as well at 9:00PM EST. Come one, come all to http://groups.yahoo.com/group/plwp2/ Now, I will warn you that we haven't been able to find a voice chat that will accommodate more than 10 people effectively. But it's still great fun and very informative to be in attendance. Just be prepared to type if need be. Together we make a difference. Bren
There are places I'll remember… All my life though some have changed Some forever not for better…Some have gone and some remain All these places have their moments ….With lovers and friends I still can recall Some are dead and some are living….In my life I've loved them all But of all these friends and lovers…There is no one compares with you And these memories lose their meaning…When I think of love as something new Though I know I'll never lose affection…For people and things that went before I know I'll often stop and think about them…In my life I love you more John Lennon & Paul McCartney I think that this song just about says it all…although I will never forget the friends and experiences that have brought me to this point in my life…it’s the bonds that I have forged with my “parkie” friends that mean the most to me now. I think that is because when I’m surrounded by others who carry on the same battle that I do, I can really relax and know that my situation is far from unique and how good it feels to be one of the family of PWP’S. On Saturday, May 25 and Sunday May 26, we held our first “Shake, Rattle & Roll for Parkinson’s Disease.” We includes my friend and partner in crime, Holly Angus, proprietor Pat Sullivan of “Le Vieux Carre” in downtown Peoria plus the countless others who helped with their time, treasure and talent to help pull of our most successful PD event. Saturday began with a symposium presented by the online support group, PLWP.org This was our second year presenting this round-table discussion involving Ph.D medical researchers, neurosurgeons, neurologists, and people who live with pd. Named “PATIENTS AS PROVIDERS,” this program was held at the University of Illinois College of Medicine in Peoria, Il. This year’s program included presentations by Dr. Richard Weber, Ph.D (Associate Professor of Immunopharmacology and Microbiology) who spoke on “Parkinson’s: The Present and the Future” and Dr. Richard Lister, M.D. (Associate Dean for Strategic Planning and Development) whose speech was entitled: “Our Vision: A Center of Excellence.” We also heard from Carol Walton, Executive Director of the Parkinson Alliance about how close we are coming to finding better treatments and eventually a way to cure PD. The audience participation in the question and answer/discussion part of the program was wonderful and intelligent questions were asked of all three of our participating doctors: Dr. Rick Weber, Dr. Patrick Tracey (neurosurgeon), and Dr. Jai Kumar (neurologist). All agreed that this excellent program was a success. Then, our group went out to St. Edward School Gym to enjoy a time of camaraderie and friendship as we attended our “parkie picnic.” We celebrated the upcoming marriage of Tom Kelly and Tami McNamera and the birthdays of Laura Dean (Harley), Ann Campbell (AJ) and Dr. Rick.. On Sunday morning, bright and early, we were all downtown Peoria at Le Vieux Carre, a wonderful, 100 year old building that has been restored by Pat Sullivan to resemble the French Quarter buildings in New Orleans. This lovely building was covered in back and red balloons and set up with a variety of tables: food, registration, welcome, raffle and prizes and did I mention food?? The food was all donated. We were treated to a wonderful and sumptuous spread including some of the best pastries and breads, fresh fruit and pasta. The weather was perfect-breezy and just warm enough and the crowd was wonderful: considerate and happy and truly committed to the cause. We had over 200 walkers and cleared (we hope this is in the ballpark) $15,000. Amidst balloons and jazz music, everyone listened for their number to be called out to win a myriad of prizes ranging from $250 sunglasses donated from Maui Jim (Toad-you’re too sexy for words in those shades!!) to an overnight stay at the downtown Holiday Inn City Centre with dinner for 2 at Jim’s Downtown Steakhouse and a horse-drawn carriage ride to books by Michael J. Fox, A.J. Campbell and Carol Hurcon from the PD listserve and handmade Raggedy Anne & Andy dolls made by PLWP member Jane Ross. It was all over much too soon. My especial thanks go out to Carol Walton of the Parkinson Alliance & the Tuchman Foundation for their kind support and help-always; to Nan & Brenda of PLWP, and to all those who made the trip here. Thanks also to my family, friends and sponsors-you made it work!!!!
To Toad A dark storm landed upon my brow filling my eyes with tormented rain I felt myself begin to drown while being pulled under by hardships pain The face that fell into my vision brought my mind to consciousness Words flowing to my aching spirit soothed my thoughts with their caress The vengeance of my body’s quake left no slack to be denied You extended to me gentleness to subdue my anxious state of mind Your gaze stayed sure upon my eyes to pull me away from mounting grief When finally, the subsiding wind allowed my battered soul relief The light grew as the darkness vanished I began to heal in friendships bath Languidly, your stories wrapped round me allowing my fragility to laugh. A stranger meets an unknown friend and God begins to build a road A blessing came upon my path the day I met a man called Toad.
Well, I can see the pwnkle finally got a pic of me on this site. She has been asking for a pic of me for well over a year. Love ya Carol!!!
shakeedave,I'm not sure what you're referring to but I'm curious. There's a feedback form page and a suggestion box on this site you can use to let us know what's on your mind. If it's about the website or Virtuality you can email me at cmcleod@one.net . I really would like to know what the problem is. If it's web or Virtuality related I'm open to suggestions and your input is welcomed. I know I make mistakes, and I've dropped more than a few postings from pages, including the journals which was pretty irritating to the journalers. I try to improve both (web & V) all the time and my performance as web-admin could be better, but I'm working on it. So please contact me if it's one of those two areas that you're referring to, and if it's something else, describe the problem and use feedback form or suggestion box. I'll make sure it gets to the right person and you'll get a response.
BRIAN I HAVE BEEN TO THE MAYO CLINIC IN JAX, FL HIGHLY RECOMMEND IT. YOU CAN CHECK IT OUT ON THE WEB. WWW.MAYOCLINIC. GOOD LUCK
WHAT IS BILLYBIB???A BROKEN KEYBOARD OR A BROKEN FUNNY BONE???
BRIAN D AFTER EIGHT NEUR. I WOULD CONSIDER A CLINC SUCH AS CLEVELAND, MAYO, DUKE,MASS. GENL. ETC. GET ON THE WEB AND CHECK THEM OUT. I CHECKED CLEVELAND AND THEY SEEM TO HAVE MOST NEUR. PROBLEMS COVERED. GOOD LUCK
I am 43years old and have just seen my 8th neurologist.This one says I DO have parkinsons!4 said I did,4 said I didnt.WHO do I believe???
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YOU KNOW I AM GONNA LET IT BE KNOWN !!!!!!!!! YOU URGE PWP'S TO GET INVOLVED, RIGHT ? WELL INSTEAD OF POSTING A NEGATIVE MESSAGE TO THIS FORUM, I WILL PLAY POLITICS .............OR AS MY MOTHER HAS SAID ...........>IF YOOU AINT GOT NOTHIN NICE TO SAY THEN DONT SAY ANYTHING.SO I AM NOT SAYIN ANYTHING..... I HOPE YOU WILL NOT THROW ANOTHER GOOD THING AWAY !!!!!!! SHAKEEDAVE
The next issue of 'V' will have a focus on sleep. You (yeah,you) are invited to send us any stories, anecdotes, prose, essays or whatever you have that pertains to sleep and dreaming. The next issue will be available around mid-June. We're going to publish every 45 days instead of each month from now on. Don't be shy, if you have something to say, send it!
MORE DETAILS IN ATHLETS USE MEDCINES STEROIDS AND ANY OTHER .HOW IS IT WORKSAND USE.PLESE SEND MY MAIL LIJONJOY@REDIFFMAIL.COM
on the 25th & 26th of may (memorial day weekend), we will be hosting our 5th in a series of pd events to raise money for research & awareness. this year, we are beginning our weekend with a symposium called: Patients As Providers presented by PLWP.org (People Living With Parkinson's). This is our 2nd in this series and was quite well received last year. This program brings together scientific researchers on the cutting edge of PD innovations, neurologists, plus activists from national PD groups in addition to a large number of pwp's. after presentations by Dr. Rick Weber Ph.D-Associate Professor of Immunopharmacology & Microbiology for the University of Illinois College of Medicine:"Parkinson's: The Present and The Future" and Dean Richard Lister,MD (brain surgeon)-Associate Dean for Strategic Planning & Development for the University of Illinois College of Medicine: "Our Vision: A Center of Excellence" we will have a round table discussion in a question and answer format. please feel comfortable addressing any and all concerns having to do with PD. this discussion will also include Dr. Jai Kumar, MD, FACP. the meeting will be held at the U of I Peoria Campus in the main Lecture Hall and is offered free to the public. It will start at 9:30 am. in the afternoon, we will be hosting a "parkie-picnic" to celebrate the upcoming marriage of two of our own and celebrating birthdays. this will be a time to renew old friendships and to make new ones. maps will be provided at the symposium. on sunday, we will hold our newest event: "Shake, Rattle & Roll for Parkinson's Disease." This will be a gentle one or two mile stroll or roll along the beautiful Peoria, IL Riverfront, starting and ending at "Le Vieux Carrre" which is just across the street from the downtown Post Office. It begins at 10:00 am with registration and coffee or water; at 10:30 we will present speakers: US Representative & PWP Lane Evans, State Representative David Leitch, Carol Walton-the Executive Director of the Parkinson Alliance, Brenda Tucker & Nancy Abraham-co-founders of PLWP. org and Greg Wasson-from the Parkinson's Action Network (PAN). after the speaker, the walk will begin and when finished, participants will be treated to a delightful buffet of juice, frappiciono, fresh fruit, homebaked baked goods and pizza and pasta while enjoying the sounds of 3 of Peoria's jazz legends: John Miller, David Parkinson, & Steve Degenford. There will be terrific prizes in two age categories for the bringing in the most money in contributions above the initial $20 entry fee which will include a free t-shirt and button. Prizes include: a $249 pair of sunglasses provided bu Maui Jim. an overnight stay at the Holiday Inn City Centre with dinner for 2 at Peoria's finest-Jim's Downtown Steakhouse followed by a Carriage Ride from Carriage Classics and for the 15 & under crowd-a swim party offered by AmericInn, among other great prizes. there will be raffle items and door prizes, information tables, and lots of good fun. this walk is being put on with the by the Parkinson Alliance anyone who is interested in joining us is welcome to contact me at <snyder201@mchsi.com> thank you
Carol McLeod (pwnkle) has been at it again. We have had a face lift that makes us more user friendly than ever. Did you know you can set you Internet Explorer to automatically open to PLWP and use it as a navigator? Just right click on the Internet Explorer icon and choose Properties from the menu. At the space where you can change your home page, simply cut and paste this link: www.plwp.org Anyway, come and check it out. Together we make a difference, Bren and Nan (Great work Carol!)
I HAVE NEVER UNDERSTOOD IF I SHOULD BE USING THIS MESSAGE OR THE PLWP.PLEASE LET ME KNOW. I HOPE ALL OF YOU SAW ON TV TODAY, SEN. ARLEN SPECTOR OF PA. AND SEN MARY LANDRIEU OF LA. AND ON ANOTHER NET. SEN ORRIN HATCH OF UTAH. SENS. SPECTOR AND HATCH CAME DOWN STRONGLY FOR OUR SIDE. SEN LANDRIEU IS NOT FOR THE BILL BUT I HAD A FEELING SHE MIGHT BE SWAYED. I SENT E-MAILS THANKING SPECTOR AND HATCH.I ALSO SENT AN E-MAIL TO LANDRIEU WITH SOME OF MY THOUGHTS AND ASK HER TO RECONSIDER. HAVE BEEN I TOUCH WITH OTHER SEN. AND SOME MEMBERS OF THE HOUSE AS THEY WILL GET TO GO OVER WHATEVER THE SENATE PASSES. ALSO HAVE WRITTEN TO SOME CANDIDATES FFOR OFFICE. I HOPE MANY OF YOU WILL FOLLOW SUIT.
I HAVE NEVER UNDERSTOOD IF I SHOULD BE USING THIS MESSAGE OR THE PLWP.PLEASE LET ME KNOW. I HOPE ALL OF YOU SAW ON TV TODAY, SEN. ARLEN SPECTOR OF PA. AND SEN MARY LANDRIEU OF LA. AND ON ANOTHER NET. SEN ORRIN HATCH OF UTAH. SENS. SPECTOR AND HATCH CAME DOWN STRONGLY FOR OUR SIDE. SEN LANDRIEU IS NOT FOR THE BILL BUT I HAD A FEELING SHE MIGHT BE SWAYED. I SENT E-MAILS THANKING SPECTOR AND HATCH.I ALSO SENT AN E-MAIL TO LANDRIEU WITH SOME OF MY THOUGHTS AND ASK HER TO RECONSIDER. HAVE BEEN I TOUCH WITH OTHER SEN. AND SOME MEMBERS OF THE HOUSE AS THEY WILL GET TO GO OVER WHATEVER THE SENATE PASSES. ALSO HAVE WRITTEN TO SOME CANDIDATES FFOR OFFICE. I HOPE MANY OF YOU WILL FOLLOW SUIT.
I am just not up to this this am. But.....if you haven't done your part, please do it, and if you have, recruit some friends. I sent lettrs to the editors to a number of newspapers. Here is the info. http://news.lycos.com/news/story.asp?section=LycosPolitics&storyId=52208 Thanks, you all know how important this is to us.
this information is available for all to use. Please use it to help the cause and get the senate to approve S1758. We all know how important to us. http://news.lycos.com/news/story.asp?section=LycosPolitics&storyId=52208
Pattnky, couldn't get to your email either, so will attempt it here. http://news.lycos.com/news/story.asp?section=LycosPolitics&storyId=52208 Love it when things happen. dee
I will be in the chat room today at 3:00p.m. eastern time today for anyone that would like to chat. Patti
hi russ, my pd started in my left side only..my arm just laid against my side. i was dx at 26, now i'm 41...got any rigity in that right elbow...i hope you don't have pd,but if you do were here for you! with or without pd......my e-mail/kmjacpohl@earthlink.net
Hi folks. My diagnosis was April 10th. My right arm and leg is just slightly tense, no tremors but I have to concentrate to relax them. No other symptoms. Well, fatigue and neck aches. Has anyone else started out this way or do I possibly have something else? I don't want PD. I am a VERY healthy 46 yr old.
yes, I thought the forum going down was very timely...LOL! I don't get mad in MGH, but I do get frustrated and disappointed. It's time for me to move on
notfair! Just as I got up to get a cup of coffee to come back and reread my MGH post before sending it-just like I am "supposed" to--I come back and BXZAAM! The forum is down...so I just want to say thanks Jaye and Paula and Chasmo for straightening things out and I will post my reply if I can when the Forum comes up again. Ever notice how it goes down for repairs when things are really hot and heavy? LOL John! Are you there? You are an amazingly gentle administrator and I admire you.
I need the official mailing address to PLWP. Thanks!
hello
hello everyone
Hello everyone...
Seems like my computer has a mind of its own on when to post. So, SYLINMI, please email me and I can explain the system on SSI. My husband also has pain in his legs, toe curls, etc. dnewton@acninc.net
SYLINMI
Parkinson's Surveys are looking good, if you have not yet participated please do at www.youngparkinsons.com.
Jackie - Welcome to PLWP. It's wonderful that you were able to find the help you needed. That's what this organization is all about, providing support in what ever manner we can. I hope you will continue to visit and we get to know you. Patti
I've been visiting this site for a few months, but until I had internet access at home I didn't feel confortable posting. Now that I do have a home system, I wanted to espress some overdue thanks. For someone recently diagnosed, the information and compassion found here are invaluable. From your posts I knew I needed a neurologist that was a MDS -- despite my primary doctor's assertion that all neurologists were movement disorder specialists. I was able to find a MDS, was diagnosed, and have been taking Mirapex for approx. two months. It has worked very well in reducing tremors and dystonia. I don't want to go on too long, or list individual names for fear of missing someone, but through your postings and journals I feel I've gotten to know many of you. Thank you for sharing your knowledge and experiences.
Hello sylinmi, Yes many of us experience pain as part of Parkisnon's Disease, but not all doctors believe that, unless they have it themselves.
This is my first visit to this site. I'd like to know about members experience with applying for disability from social security. How difficult is it? Although I have been diagnosed since 1997, there is still some confusion about my right leg, due to arthritis in my hip as well as rigidity and distonia,i.e.muscle cramps and spasms which are painful, and cramping or curling of the toes of my right foot. Does anyone else have pain? Thanks for your response.
This is my first visit to this site. I'd like to know about members experience with applying for disability from social security. How difficult is it? Although I have been diagnosed since 1997, there is still some confusion about my right leg, due to arthritis in my hip as well as rigidity and distonia,i.e.muscle cramps and spasms which are painful, and cramping or curling of the toes of my right foot. Does anyone else have pain? Thanks for your response.
Anyone that is interested in helping out on the re-roofing job in Ohio, this is to let you know the dates have been changed to May 11th and 12th, due to Mother Nature. Please contact pwnkle at cmcleod@one.net for information or to volunteer.
Volunteers needed in the mid-western-Ohio area for a re-roofing project. The house belongs to a parkie plwp member and we're going to try to put a new roof on it in one weekend but we need more fit guys/gals who can get up there and bang those shingles on. There will be food and drinks for the volunteers and the cheering squad, anyone who needs to stay overnight can do so. Bring your telescope if you have one, if you play an instrument, bring it along! The dates are; April 27 - 27 More details when you contact me if you can make it for one or both days. This will be a good chance to meet some good folks, have fun and work your buns off. Pwnkle ….. cmcleod@one.net
Nan and Bren sorry i missed you at the Unity Walk, but there were so many people, it was great to see all that support. i did not make it the full 2 miles but i did not do to badly. could not have asked for a more beautiful day. it was an uplifting experience.
There are some new links on the front page of this website that you might find interesting. I hope you all take a peek, they're at the bottom of the page.
WOULD LIKE TO START A SUPPORT GROUP IN HICKORY, N.C.BUT AM HAVING TROUBLE CONTACTING PEOPLE. HAVE IN MIND A GROUP TO JUST TALK, MAYBE BREAK BREAD TOGETHER, AND SHARE FEELINGS ABOUT PD..IF YOU ARE INTERESED POST A NOTE AND I WILL POST MY E-MAIL OR PHONE NUMBER. I DONT KNOW WHAT I AM DOING OR HOW TO GO ABOUT IT SO WILL WELCOME ANY SUGGESTIONS. WHERE ELSE SHOULD I SEND THIS NOTE?? JUST GOT M.J.FOXES BOOK AND IT IS VERY GOOD.
Candy, It would be great to meet you. I can't believe it's next weekend. It's always a wonderful time seeing friends in the Parkinson's Community. Be sure to bring your Geritol folks! LOL I'm doubling my dosage!! LOL See you there Candy et al! Bren
I did not see my message appear so I am writing again. (Sorry if two like messages show up.) Our Lakeway Area Parkinson' Support Group is having our first Annual Walk For Awareness and For a Cure today, Saturday, April 6, at the campus of Walters State Community College in Morristown, Tennessee (East Tennessee). We have been blessed with a beautiful day and many good friends of the community. We are praying for a successful and fun day!
Our Lakeway Area Parkinson Support Group is having our First Annual Walk For Awareness and For a Cure today at Walters State Community College in Morristown, Tennessee (East Tennessee). God has blessed us with a beautiful day and many friends to our Group. We are praying for a successful day.
In case anyone's interested, Web MD Health has some really informative articles on pd under "disease and conditions." In particular, they discuss neurotrophic proteins and genetic engineering as potential promising treatments
One of the most outstanding movies this year is "A Beautiful Mind". Russell Crowe gives an outstanding protrayal of Dr. John Nash. Nash received the Nobel Prize for mathematics in 1994. He is still recognized as one of the world's greatest mathematicians, but what the movie brings out is how he becomes victorious over his mental problems. Nash has paranoid schizophrenia. He became delusional, confused, frightened, and extremely paranoid. He began seeing things that were not really there. One of the most powerful scenes in the movie is when John Nash sits on the edge of his bed realizing the difficulty he has in sorting out what is real and what is delusion. His loving wife, Alicia, comes to him. She kneels in front of her husband, takes his hand and places it on her face. She says, "John, this is reality." She then places his hand on her heart and says, "This is reality." He looks at Alicia and says, "All my life I have sought reality. I looked for it in mathematics, in physics, in metaphysics, even in the delusional. But you taught me the most important lesson in life....that the greatest reality is love." Go forth today and realize that love is the most important gift to give and to receive. In our living with and adjusting to Parkinson's disease realize that love is one thing that can work to bring relief and healing and can bring joy into our's and other's lives. A lesson from "A Beautiful Mind" is to share a beautiful love. I need this, and so do you! David
Candy, We will be flying in for the Unity Walk on the 11th and staying until the evening of the 14th. We are staying at the Bellevedere Hotel. If you want to contact us so we can connect, the number is 212 245 7000. Looking forward to seeing you, Nan
For those coming to the Unity Walk in NYC...the PLWP dinner will be at www.churrascariaplataforma.com at 6:30, located next door to the Belvedere Hotel. The cost is $38.95...all you can eat...includes salad bar, a variety of meats, and a few side dishes. The cost does not include tax, gratituty or dessert! Please email me at janemartha55@yahoo.com if you want to join us by April 8. If you are included and you aren't able to make it, please notify me by April 10 to avoid a $10 no-show fee...thanks. Hope to see you there!
For those coming to the Unity Walk...you can go to www.churrascariaplataforma.com to check out where the PLWP dinner will be on April 13 at 6:30. It's located right next door to the Belvedere Hotel. The cost is $38.95...all you can eat...includes salad bar, several choices of meats, a few side dishes. Cost does not include tax, gratuity or dessert! Please email me at janemartha55@yahoo.com if you're coming...but if you are included and can't make it please let me know by April 10..to avoid a $10 no-show fee...Thanks! Hope to see you there!
Dear Friends; Below is a message to you, from my Neurologist, who has seen me at my worst, in early 1998. Dr. Van Petten has watched my health improve, once every 3 months, for almost 4 years. I did ask her if she would be willing to summarize what she had seen of my PD, in that time. My checkups have been changed to every six months now, & I am on the minimum doses of sinemet, mirapex, & artane, & have NO tremor!! That is worth 25,000 miles!! Your friend in "Parkyville" Jim Wetherell ps: Get well with me. Please, exercize everyday! ____________________________________________________________________________________ March 20, 2002 Jim "Never give up!" Wetherell is one of my most inspiring patients! Jim was diagnosed with Parkinson's disease in 1995. Has it slowed him down? On the contrary, Jim decided he was going to stay as active as possible, and has actually become a major athlete. Previously fond of cycling, he bought a recumbent 3 wheeled "tricycle" thus avoiding potential balance problems of a 2-wheeler, and has become a competitive cyclist. He has ridden over 25,000 miles, and participated in many rallies and competitions. Best of all, he works tirelessly to encourage others with Parkinson's - with his own example, the organizations he is involved with, and his web site. Jim faithfully takes his medication, but he also does all that he can on his own to maintain strength and mobility. In reality I cannot see any progression; in fact he seems more vigorous every time I see him. Keep going Jim, you are a delight and an inspiration! Carol Van Petten, M.D. __________________________________________ Read more about Jim at www.Inevergiveup.org