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In 1957 I lived in Scotland for awhile. I was a child but my memory is very clear on this. My mother took me to visit her cousin in the "Poor House" They didn't mince words. She had "shaking Palsy" and when she wanted to walk forwards she had to walk backwards. Everyone said she had a traumatic experience in Australia, but there were many people in the institution with this. I think it has been called many names - people were hidden away but the disease has been there for as long as man. I have taken numerous medications for anxiety and now realize how addictive and unsafe they were. At the time of prescription I trusted the doctor implicitly but now I fill my medications with the awareness that the cost may be more than financial but I am making a choice. I applaud your courage to go the road without meds. My husband feels the same way but he could not function without them. Thanks for your honesty. ----- Original Message ----- From: "Rayilyn Brown" <[log in to unmask]> To: <[log in to unmask]> Sent: Monday, November 19, 2001 10:51 PM Subject: Re: Ervin/PD History > Ervin, I'm going into my 6th yr of PD. I was on Sinemet for a year and was > "ON" for 30 minutes. It didn't bother me, but didn't help much and finally > made the dystonia in my left foot so bad I couldn't walk. When the Sinemet > was increased it didn't help and I just got nauseous. Looking back, the > first couple of yrs weren't too bad. ..I even made it to Egypt in Jan of > 1999. It seems that when I took the Sinemet was when the stiffness and pain > got bad, but that may just be the progression of the disease. > > I want to comment on 1000 yrs of history. Where are the case records? The > side of my family I think this came from we don't know much about and, well, > my great-grandmother died when she was 28 yrs old in childbirth. Her son, my > grandfather had PD. Also, PD used to be an "old person's disease" people > got shaky and stiff, etc. People didn't live long enough to get this > disease, if I had died from arterio-venous fistulas (2 ops) when I was 28 > and 30, I would never have had ovarian cancer at 43, surviving that enabled > me to develop PD at age 60. > > I hope no one gets mad me because I chose to not take meds, but just keep me > in mind for comparison. I"ll be 66 soon. I think it also makes a difference > whether it's young or old onset PD. Am I correct in assuming PD seems to hit > younger people harder, but they can take the meds better, or is this too > sweeping a generalization? > > I sure would be on PD meds if they worked, you bet! Just did my mile on > treadmill and water exercises. I have no "life", but this is what I feel I > must do. The cancer experience made me less receptive to following Dr.'s > orders. PLus I can't seem to take much of any kind of med. Don't know what > I'll do when I can't move, just die, I guess, but it will be on the treadmill > or in the water. > > Pls don't anybody interpret my remarks as telling anybody what to do. I just > think we deserve better meds. [log in to unmask] > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn > ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn