Parkinson's Disease Tulip


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Old 01-12-2013, 09:52 AM #11
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Originally Posted by AnnT2 View Post
I wonder how many people put off taking Sinemet because they are told it will eventually cause dyskinesia. My movement disorder specialist disagrees and approves of Sinemet. I am an example of someone who has taken Sinemet for a long time (16 years) with little if any dyskinesia. I have a mild head bob when I am talking in earnest, but that was there the first six months after diagnosis and before taking Sinemet.

I feel for Michael, but I do not think the dyskinesia is from his meds.

Ann
thanks but i just have an opinion, i might be wrong but posted my opinion based on what i remember, darn pd!
there is a lot of papers on this subject.
being someone who can't tolerate even very low doses of agonists - make me very drowsy - i think about trying the new extended release agonists because the downside of sinemet for me is having to very carefully time my protein intake which definately complicates one's social life, times when it just doesn't work and the annoying "living dead" getting up in the morning and wearing off. i'm reluctant to add other meds, i guess i'd rather live with the "devil i know" than the one i don't and my neuro doesn't think i'd do a lot better on anything else - but have to admit he follows my lead and i'm not bugging him about it.
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Old 01-12-2013, 07:50 PM #12
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Was the name of Mr. Fox's released for sale in March of 2009. He admits to knowing he had the disease 10 years before going public. He was living in denial and popping Sinemet to hide his synptoms. He admits to not following his doctors advice for scheduled meds. Who could blame him? It is a tough diagnosis to receive. Super Film Star or secretary, the disease interrupts our plans to be successful. We need to redefine success. He redefined success as setting up a foundation to speed up research to find a cure. A much more difficult model of success to achieve. But I don't believe he realized he would become q role model for PD.

I am not his doctor. I can only wish him the best of luck. I o believe his dyskenisias are caused by his drugs. Rush Limbo was a Bozo for suggesting otherwise. He is also a popular entainer, but Mike's interrupted life helped put him in a position to hhelp, in a personal way, many disabled peoples lives.

Dianna
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Old 01-13-2013, 06:16 AM #13
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Default Different Strokes for Different Folks

"I wonder how many people put off taking Sinemet because they are told it will eventually cause dyskinesia. My movement disorder specialist disagrees and approves of Sinemet. I am an example of someone who has taken Sinemet for a long time (16 years) with little if any dyskinesia. I have a mild head bob when I am talking in earnest, but that was there the first six months after diagnosis and before taking Sinemet."
Ann, because you have more tolerence for the drug, do not assume all should react as your body does. Consider yourself lucky. I was one of the patients who heard that Senimet had side affects and for my first 12 years taking the drug, went to an educational symposium and heard the director of the Mayo clinic teach that Sinemet had no side effects. My neurologist had sponsored the event so convinced me he should increase of Sinenet. A month later I was in a coma in the intensive care unit, my body having dyskenesias so badly my Kidneys were shutting down due to the amount of protein my muscles were throwing out as a waste product. I was in a coma for 3 days while they weaned me off my drugs. They tried 3 times to wean me of the drug induced coma before they succeded. It happened again a few months later.

I have a genetic form of PD as I have two mutations of my Parkin gene which, according to research, makes me ultrasensitive to Sinemet.

Dianna

Last edited by vlhperry; 01-13-2013 at 06:19 AM. Reason: add quotes and Italics
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