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Old 03-17-2008, 09:30 AM
ol'cs ol'cs is offline
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Join Date: Sep 2006
Posts: 629
15 yr Member
ol'cs ol'cs is offline
Member
 
Join Date: Sep 2006
Posts: 629
15 yr Member
Default Ten years........

Nice to see you post Peg, so I'll put in my two cents too.
I am somewhere in my 11th year now Dxed at 39 years of age. Worked for 6 years after Dx, untill my wake/sleep cycles were beyond help by hypnotics and stimulants, and my dystonias and dyskinesia were too much to handle publicly.
I tried every D agonist in the book, including Apomorphine. I tried them each several times, I tried them going up slowly, I tried them going up quickly. I just couldn't handle any one of them, they made me sick, they made me faint, they made me swell up, they made me half-crazy, like a zombie.
I am an "akinetic" PWP. Rarely shaking, but commonly twisting with dyskinesia, and hurting from dystonias.
I was put on Amantadine as sole treatment for the first 3 months, then added sinemet 25'100, 3/day. With Klonopin to stop dyskinesia I was good with this for 3 years, almost like PD wasn't a problem. Then the ON/OFF syndrome hit. That's when I tried Comtan and all the agonists to no avail. The next 3 years of work were hell, so I retired in 2003.
JUst forgot about trying agonists again for the most part, although i can handle a small amount of Mirapex with decent results every now and again. Can NOT go without Amantadine. Went up to 1500mg of L-dopa /day, but was able to drop back to 600-800 mg/day with 200mg Amantadine and have stabilized. I had a period of frequent falls, but that seemed to diminish as I learned the "ART" of festination. I can walk for short distances unaided, a little longer with a cane, but if I don't time things right, I can suddenly have a severe off. This is very disconcerting if it happens when I'm out by myself, but chewing 200mg of sinemet usually brings me around enough in about 15-25 minutes, to finish what i've got to do for the day then hit the chair or the sack. I take pain medication and medication for GERD and Gout. If I MUST keep myself on my two hind legs for any amout of time (wedding or funeral), then I take ritalin, but for as much as it keeps you up, you pay for it later. Would consider my life OK, except for family problems all related to PD. It's personal, but i will say it's frustrating and heartbreaking.
Looking forward to something which will at least ensure that I don't get much worse, soon. cs
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"Thanks for this!" says:
imark3000 (03-18-2008), lou_lou (03-17-2008)