MEDS: Out of curiosity I would like to do a... - PSP Association

PSP Association

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MEDS

kryste profile image
7 Replies

Out of curiosity I would like to do a check of the meds that your doc is giving for PSP My Aunt Bev Takes Carbidopa-Levodopa 25-250 tab 5 times a day and Pramipexole 3 tab 1 1 mg also 5 times a day and that is it there is nothing wrong with her brain, she has to remind me of things half the time she can no longer walk but still trys to get out of bed , she still wants to eat even though she has the peg tube which I still let her have food try to make it soft though she did eat french toast this morning shes not ready to die still has fight in her told hospice to fuck off and is 100% smart ass and some times sees a simise cat running around which figures is her imaginary cat because I told her once in a while she sees things or people that are not there Has trouble sometimes taking a poop which I use a supositry , has had PSP going on 14 years now. I see posts about the end , and about different meds that they are trying and wonder are the docs even working togather anywhere or are they just still guessing on what to give for PSP. PSP will not kill you but choking and phanomia and some times UTI if they get bad enough, What will kill you or your loved one is HOSPICE, and not feeding them or giving water. I dont know Im just babblying on with my thoughts they are all scrabbled So this might not make any since.

Lots of Hugs to everyone

Aunt Bev and Kryste

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kryste
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7 Replies
easterncedar profile image
easterncedar

Presently, my guy is taking nothing. At the recommendation of his neurologist, he was taking high doses of CoQ10 for a few years. When swallowing became an issue, I dropped it. He was on sinemet and amantadine for a while, but neither helped.

Pentland profile image
Pentland

Hi. i was told flatly at the Parkinson's Clinic shortly after my husband was diagnosed with CBD that there was no suitable medication. He only takes a mild antidepressant. I am interested to know if others have found sny medication suitable.

pzagy profile image
pzagy in reply to Pentland

My mother in law is on a few antidepressants as well as blood pressure ans cholesterol meds. She is also on heavy sleeping pills that do nothing. We have been told that there are no meds for this desease, I was also told that medical marijuana is not right as people with CBD suffer greater withdrawl.

Amilazy profile image
Amilazy

Kryste there is no medication for PSP but Drs use some Parkinson meds to relieve common symptoms C-levodopa is commonly prescribed for help motor function and removing apathy. My wife is still on low dose Madopar (soluble C-Levodopa) we have tried removing it but she become floppy and very apathetic, so still in use. All other meds such as laxatives, eye-drops and saliva suppressor treat PSP symptoms. Ask your dr or pharmacist to see if you can reduce some of the meds but do it slowly say 4 a day see if any affects if not reduce another say a fortnight later until you notice a difference and step back up. But do it with your Dr knowledge and approval. Good luck. Tim

abirke profile image
abirke

Has she been diagnosed with PSP for 14 years. And why are they still giving her Levodopa and Pramipexole....these two items are for Parkinsons....do you see a difference in her/...I do hope so! Our doctor..s treat the symptoms.....and mostly via what I tell them he needs. Since there is no cure it is difficult for the docs to do more than that.....I mean that's my opinion on it....

AVB

shasha profile image
shasha

I TAKE SOLUBLE MODOPAR AND FIND IT INVALUABLE FOR NECK PAIN AND REPATIVE LEG SYDROME ....

jillannf6 profile image
jillannf6

I TAKE AN ANTI DEPRESSANT ANDAN ANTI ANXIETY MEDS F|(( Was on it b 4 being dxd with PSP ) AND JHIGH BP MED TOO WHICH CAME ON A T SAME IME AS I WAS DXD W. P2 ,AMANTADINE AND CO- CARELDPOPA INE IN EAR;Y YRS NEITJHTER DID AMUY GOOD SO I SOTPPE D

O

\JILLTMXXXX

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