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Real members of MyParkinsonsTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Decreasing Medication?

A MyParkinsonsTeam Member asked a question đź’­

My mother is currently taking parkinson meds. and has for a while now. She does not really have tremors anymore, in the past her hand/arm temored but now not so much. Her walking/balance has definitely gotten worse but she doesn't walk much anymore anyway and when she does someone is always there to assist her. I realize this is a question for her doctor, and she has an appointment next week, but I was just curious to hear from some of your experiences if anyone has decreased or even gone… read more

August 7, 2021
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A MyParkinsonsTeam Member

I'm just now coming out of that faze of parkinson's. It has taken me 12 yrs. Please get into therapy because anxiety is just one of the perks for this damn dragon. Depression is another, sleepless nights, can't regulate your body temperature. There are more, but I don't think you need to worry about those right now. I was diagnosed in 97, but I think I had at least 2 yrs prior to that. The more you get out do things that you enjoy, take a walk because you will need to exercise especially your legs. But don't give into this dragon. When I have tremors I look like Linda Blair from the exorcist, I just don't spit pea soup. My head bobs from side to side up and down. It's quite scary for some people. I'm use to having them, but now I don't care if someone has a staring problem. I do worry about getting a little too shaky. But oh well. I know the medicines I'm on will work I just don't need to freak out.

August 30, 2021 (edited)
A MyParkinsonsTeam Member

I doubt anyone could answer all of the questions we have. None of us are the same in our disease.

August 12, 2021
A MyParkinsonsTeam Member

I'm 79 and was diagnosed about a year ago and have taken myself off the meds a couple of times. Right now I take 1 pill 3 times a day, but don't notice much difference with or without them. Seems like possible side effects of c/l are as bad as the diisease itself. I see a movement disorder spec at USC, and she believes if symptoms aren't getting better, I should increase dose of.c/l. I also see a neurologist who is not a specialist, and.he thinks c/l is overrated. It doesn't slow progression or cure Parkinson's, and he says I should do whatever makes me feel better. I'm still experimenting. Have tremor in right hand sometimes, and if I stand still too long I shake all over. Balance is bad. Clonazepam helps the shaking. Sorry for going on and on. I'm new at this disease and still trying to figure it all out. No clear cut answers.

August 11, 2021
A MyParkinsonsTeam Member

I must say that I have had doubts about my PD diagnosis, especially since it was made more from an observation of my gait and my responses to certain questions, and not to any imaging. I did have an essential tremor in my right hand, but not while at rest, only when I was using it. I am taking 50 mg of Primidone for the tremor and 3 (1/2 tabs of C/L)per day for Parkinson's. Now I seem to suffer from anxiety attacks if I have to leave my house, sometimes just to go to the grocery store which is only a mile from my house, and the few times we venture out to eat, I feel uneasy the whole time until we return home.

August 20, 2021
A MyParkinsonsTeam Member

Diagnosis of PDis based on a combo of history, exam and imaging. The DAT scan is great, but is not totally effective. If the neuros think he has a form of PD, he probably does.

August 13, 2021

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