No medication

[Iansgadan]

Has anybody else been advised to come. Off their mediication. Like I. Have Iwas advised to. Come off my Parkinsons medication because it was doing me. No good whatsoever. Well I did do that about 9. Months ago and I don't feel any different I was diagnosed with Psp in 2013 but I wasn't given any medication for it except the one that is the Parkinson I do fall a lot but that's all that's. Different

[NannaB]

My husband stopped taking medication other than for unrelated conditions. He did have atropine drops under his tongue to reduce excess saliva but all other medication he tried, had adverse side affects i.e hallucinations, night terrors, tiredness and apathy. He felt more himself without the medication which wasn’t doing any good and did not help with any of the symptoms of PSP. He was fortunate that he was rarely in pain and if on rare occasions he indicated he had a headache, I had liquid paracetamol I could give him.

Very best wishes

Nanna B

[Kevin_1]

Hi Iansgada

I'm so sorry to hear you are having to deal with PSP.

This article might be of use to you.

movementdisorders.ufhealth....

Most people I am aware of only take medication for symptom control.

I think some take Carbidopa/Lepadopa / Simemet to help with some of these. However if you didn't feel any different then maybe it was not working for you. I will leave it to others who are on that to make a more informed comment.

Essentially there is no known treatment which even slows progression.

Having said that there is a very exciting drug trial in the U.S. which looks to be promising.

Physio (including hyro physio), exercise and massage are all very helpful for preserving movement.

Best to you

Kevin

P.S. the information in the article on CQ10 is out of date. There were some promising early trials, but when they completed stage two trials it was found not to be of benefit.

Adding - I hope your well snow proofed up there in lovely Ecosse!

[tkmama in reply to Kevin_1]

Hi Kevin,

I will be starting a Phase 2 drug trial in April in the U.S. I am hopeful it will help me as well as others.

TK

[Kevin_1 in reply to tkmama]

Fantastic

Do come back and let us all know how it goes.

Wishing you both the very best on this.

Kevin

[Nanny857]

W was advised to stop taking Amantadine and to start Sinemet a couple of months afterwards. He hasn't started the Sinemet yet.

[Hidden]

Sorry you are having to deal with PSP

My husband was taken off his Parkinson meds as soon as he was diagnosed with psp,they were not working,no different except on the pocket book.he was also finally diagnosed in 2013 as well.

Stay up right😊

Dee

[Rhonda838 in reply to Hidden]

Hi

[Hidden in reply to Hidden]

My husband doesn't take anything,dr has even taken him off high blood pressure meds.

[raincitygirl in reply to Hidden]

Hi Dee, I just saw this: do you know why Dr stopped the BP med??

Anne

[Hidden in reply to raincitygirl]

PSP seems to run a lower blood pressure and when he was in the hospital he was running at a normal to low BP.

[raincitygirl in reply to Hidden]

Well, thank goodness for small mercies, I guess

[Hidden in reply to raincitygirl]

I also belive that the medical system has written him off,and I also would rather have him go from a quicker death then PSP.

[raincitygirl in reply to Hidden]

There's some bitter reality there... And I totally understand what you mean: I've looked at hubby's BP meds and wondered: "Really? You're protecting him from THIS?..yet you can do nothing about CBD..?".. Sigh...

[Evertonian]

My wife's consultant said to keep taking Sinemet if they are working after being told she had PSP. If she ever misses a dose she feels awful.

[aliciamq in reply to Evertonian]

My husband still takes sinemet and amantadine - I understand they work together - As long as he feels improvement with them, we'll keep taking them ~

[Hidden]

The worry with taking the Parkinson's medication is that it can and in my experience of it with my father , cause dystopia. Dystopia is a movement disorder show as cramps and rigidity. It is very painful and unfortunately once established cannot be reversed when stopping the medication. It does tend to occur after taking the tablets for a long period. The distress and misery it caused my dad was immense. I would be reluctant to start taking them. They were not a cure any way, that's for sure.

Best wishes.

[aliciamq in reply to Hidden]

Isn't rigidity part of PSP? Jack drinks water before bed for cramps - that has helped tremendously - unfortunately he needs to get up and pee risking a fall. One thing or another🙁

[raincitygirl in reply to aliciamq]

That is damn true! You can't win...

[Hidden]

Sorry Iansgan, I meant dystonia not dystopia. Dystopia is an eye condition. Look up dystonia and causes on the net.

[tkmama]

Iansgaden,

The Parkinson's drugs did not work for me either, so I stopped taking them as well. All I take now is vitamins and Osteo-biflex over the counter medicines. I also have fallen a lot.