Changed to madopar: My sister Rose is in... - PSP Association

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Changed to madopar

nannygoon profile image
8 Replies

My sister Rose is in final stage PSP and is now at risk of choking and is on a pureed diet and the nursing staff have had to remove her false teeth. Also have changed from sinemet tablet to madopar liquid and Rose remarkably has been communicating again! Able to answer us and even answered a question on a quiz show on the t.v.! Nursing home is amazed as are we, could it be the change in medication? Anyone experienced this?

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nannygoon
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8 Replies
easterncedar profile image
easterncedar

Dear Nannygoon, I'm guessing that no one else has experienced anything like this, since this question hasn't generated a response. Psp is a tricky disease, as well all know, but such a turnaround is remarkable. So your sister is taking food again? Can she tell you anything about how she's feeling? Our appointment with the neurologist got put off because of the snow in Boston last month. When get do get to talk to Dr. Apetauerova I will be sure to ask her about your sister's response to madopar liquid, but it won't be soon. We got more snow overnight and there is another storm in the forecast. Spring is nowhere near here! love, Easterncedar

nannygoon profile image
nannygoon in reply to easterncedar

She can't tell us how she is feeling if she's hungry.tired, or anything really, but can answer yes or no, and she has said a few things, but we can't make out as she has no teeth in now! she can't have normal food anymore all has to be purreed and her Tea and drinks thickened with a thickner. Good luck to you and hope the snow doesn't last long. we have had a nice spring day today here in Scotland although it is still cold but pleasant.

zuzanka2 profile image
zuzanka2

Wow! Thats great! I wanted to do actually other way around as madopar , we think , doesn't help anymore... Change for sinemet. We have madopar tablets, how do you get liquid? Is it better? Thanks a lot and good luck ;)

nannygoon profile image
nannygoon in reply to zuzanka2

Rose had sinemet in tablet form and used to crunch it and when her swallow got worse half of it would just come back out her mouth. As far as I am aware sinemet can't be got in liquid but the nursing home got madopar which is similar to sinemet and so far doing her good and she is getting it all as it is liquid. Good luck.

jzygirl profile image
jzygirl

I think you will find any change in medication will have a wow factor for a short time but normally not long lived enjoy while it lasts.

I think we should change the medication every six months to confuse the brain into working. Janexx

nannygoon profile image
nannygoon

Great idea! Would try anything to have my sister back! Thank you take care!!

onthemead profile image
onthemead

J takes a dispersable Madopar first thing for a quick belt as it were. Then Sinemet the rest of the day. I'd always assumed Madopar was simply a fast acting Sinemet.

nannygoon profile image
nannygoon

Thanks, not sure about if it is fast acting sinemet but it is making a difference to her communication soi am happy with tha and hope the effect lasts!!

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