My granddad had been diagnosed with PSP .H... - PSP Association

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My granddad had been diagnosed with PSP .He has been on syndopa since 7 months,but no benefit has been noticed.can it be stopped?

chopra123 profile image
8 Replies

Has anyone been through the same situation? My grand dad complains of severe dizziness and pain in various parts of the body. even his movements have been restricted,although he can walk but very slowly. Can we stop the medicine for a week and see if it benefits him?

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chopra123 profile image
chopra123
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8 Replies

Syndopa (Sinemet) often has no benefits in PSP (Richardson's type). Since withdrawal symptoms are common when stopping this medication too quickly, it should only be withdrawn at a pace and dosage instructed by the doctor who prescribed the drug. A neurologist with experience in movement disorders would be the best person to identify any benefits from a trail of being on or off this medication.

Cheers

T.

jillannf6 profile image
jillannf6 in reply to

Hi I agree with comments above

Lol jiłl

:-)

shasha profile image
shasha

So do I !!

easterncedar profile image
easterncedar

Sinemet didn't help my guy, and there was no problem when he stopped it. He thinks he gets some benefit from Selegiline, although the dizziness is still pretty constant for him. It's one of the worst things about psp - there's really no treatment at all that's sure to help, although some things do work for some individuals, although generally only for a limited period of time. There are lots of discussions about that on this forum - it's a great way to learn about it. Just look through Strelley's posts! Easterncedar

chopra123 profile image
chopra123 in reply toeasterncedar

thanks a lot. glad that people are here to help. Selegiline is the medicine,is it for PSP? Ive heard about Coq10 helping people.

easterncedar profile image
easterncedar in reply tochopra123

My guy has been taking 1800 mgs of Coq10 a day for about 3 years now. At best, I think it may slow the progress of the disease. For my guy it doesn't really relieve the symptoms, but he has not deteriorated as quickly as some. Look around this site, and you will find a few posters who have had success for a time with various things. It's hard to separate a positive result from the natural highs and plateaus of the disease. The Lahey clinic is supposed to be releasing results of its study of Coq10 soon. We see our neurologist there next month and will share what we learn, of course. Best wishes to you, chopra123, and to your family. Easterncedar

chopra123 profile image
chopra123 in reply toeasterncedar

Hey i did try to search on the web regarding what helps and what does not for PSP,but theres but unfortunately there is no proven solution for this disease...I am thinking about trying Coq10,lets see how it goes about. Best wishes to you too and thanks for sharing

ultramodern profile image
ultramodern

Namaste, Chopra.

You just said it.

There ain't no treatment or cure for PSP/CBD.

At least not in the near future. But there are some pharma companies who have their products on clinical

tests. Without any results thus far.

Just stay away from anything that spells DOPAMINE---that's OK for Parkinsons only. And PSP/CBD is not a Parkinsons Disease. Or any other prescribed medication.

Since a couple of years a lot of friends on the forum have and are trying Coq 10...with no harmful results that have been spoken about.... so why not?

best,b

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