Does anyone have a good experience with Sinemet?

[Heady]

Everyone talks about all the horrible side effects of Sinemet and how their loved one is much better without it! S has been on it now for over a year and I can only say good things. His movement is a lot better now, than it was before, allowing for PSP taking it's toll. They have just given him some to take at night, to help with moving around in the bed. This has improved, no more just collapsing in bed and staying in the same position, can even roll on to his side now!

I know he hasn't recovered full movement, but is nowhere near as stiff as before! I could feel the downward spiral then, even with loads of exercise and he had a personal trainer to try and help with the stroke damage, which we had presumed was causing all his problems. Now, I feel he is on an even keel and the physio is now starting to help and he is improving!

I write this, as I sometimes feel everyone is extremely negative about the drug, I know it's not helping a lot of people and they are suffering bad side effects. But I am worried that new people might be put off taking a tablet that could be of benefit to them!

Lots of love

Heady

[mcfly]

yes, it helps my stiffness and my breathing. It does not help my balance issues. Of course I am only in my fifties. I can still walk.

[Heady in reply to mcfly]

Glad to hear Mcfly. Don't think there is anything for falling, bar a rubber suit, with full helmet!!!

Lots of love

Heady

[jillannf6 in reply to Heady]

hi heady

i agree a rubber,suit like a michelin men would b great for us pPSP people but how would we wear it ??

only joking

lol Jill

[Heady in reply to jillannf6]

Hi Jill, shame we can't put drawings of how you would like your suit be, on here!!! I think I'll design S's with lots of people hanging off cliff faces or else african animals. Are you a pretty pink ribbon girl?

Come on people, what would your suit look like???????????

Lots of love

Heady

[NannaB]

Hi Heady, I took my husband off Sinemet on recommendation by the neurologist and then read all the posts here about long term side effects. He has deteriorated but don't know if it's normal progression or because he is not on Sinemet. I still have some and have just asked him if he wants to start taking it again to see if he improves and he said, "No", It's a job to know what 's the best thing to do isn't it?

Nanna B

[goldcap in reply to NannaB]

Oh Heady my head is swimming! He is on so much medication at this point that it is hard to figure out which ones are actually doing anything at all! Jgc

[Heady in reply to goldcap]

Know that feeling! S has to take pills seven time a day, various pills, varying from 1 to 6 at a time!!! How he doesn't rattle I don't know, takes me a good half hour to do his pill tray. Hate to think the state I would be in without it. The man/woman who invented it, must have been in our boat!!!

Lots of love

Heady

[cabbagecottage in reply to NannaB]

Isn't it Just , We have been going down the road of reducing and stopping meds . We recently stopped Roprinirole which replace the neupro patch he had been using for 6 years , he isn't shaking anymore and dystonia no where near as bad . now only taking Sinemet110x3 daily . I have always thought they have been any help but afraid to stop them He has been housebound for three years fast to his chAir and hoisted on and off the commode . I have tried to keep a diary but he is so all over the place I have found to impossible .

Progression OR not !!!

[jzygirl]

Have just been told to ween other half off of it because it has made him so stiff and unable to walk. Mind you they was treating him for pd so he was on a hefty dose. (25/100 nine tablets a day)

[cabbagecottage in reply to jzygirl]

is there any improvement

[jzygirl in reply to cabbagecottage]

Oh yes the improvement is very noticeable even the physio remarked on it and that is just after 3 days going from 3tabs 3 times a day to 2tabs 3 times a day. Am hopefull for more as the dose is decreased. Will keep you informed of things. Jx

[cabbagecottage in reply to jzygirl]

Please do keep in touch .

[cabbagecottage in reply to jzygirl]

Had he been taking them for very long .

[jzygirl in reply to cabbagecottage]

He had been on them for 2 years. But he was increased every 4 months last increase was in june by july he was chair bound

[denmob]

Yes the drug worked for my husband. He didn't have side effects.

[anniemay]

I think its a question of individual needs - if Parkinsons is in the mix, then Sinemet will definitely help, but diagnosis is so individual and complicated that its impossible to tell without extensive tests and assuming the sufferer is in the early enough stages and not drugged up enough already to be able to read a response to the tests! My husband's experience 6 -10 years ago, even after to PSP diagnosis, was that they would not accept that levadopa drugs were not needed and in fact made matters much worse so we went through four years of hell that might have been easier if we knew then what we know now. However, we are in a good place at the moment, still mobile with aids for short distances, can eat anything, mostly continent and coherent. Long may it last!

[Heady in reply to anniemay]

Here, here Anniemay! My motto is everyday I keep S out of a wheelchair, is one less that he will have to spend in it. WHATEVER it takes!!!

Lots of love

Heady

[zjillian]

My husband had a bad response to Sine-met. He is 7 years past diagnosis and side-effects of all his medications have so distorted the picture that his PSP doctor started reducing and slowly eliminating meds. He is off Parkinson's meds, Alzheimer meds, and one of his anti seizure meds. The side effects are better now, he is happier, not as frightened and agitated but cognitively he is much worse. I don't know if all of this is just the progression of the disease. But I am glad we have stopped some of his medication.

His terrible falls stopped when we stopped using Valium for agitation.

[cabbagecottage in reply to zjillian]

swings and roundabouts . . it's eight years since my husband started and I didn't realise that the meds had these sued effects oven though you read about them on the instructions . Most instructions say the same thing.

Does anyone have confusion hallucinations , seeing people . mY husband has had a few episode over the eight years mostly after taking a heart tablet . Digoxin or a certain pain killer. He hasn't got any dementia so they tell me

[Auddonz]

Heady, Didn't relazie this post was from a year ago to just now. How are you? My D has been on it since he was diagnosed in late March. The initial dosage didn't do much but when I took him to another neurologist she increased the strength he was taking or each dosage and also increased it to 4 times a day. That made all the difference in the world. He can walk, really doesn't need his walker but I make him use it, get dressed, etc. The only real issue I see is his memory which has has gotten much worse. But since he was diagnosed with mild dementia years ago consistent with age, I don't know if it is the med or the PSP or age related.

Love back,

Audrey (aka auddonz)

Oh btw email issues which is why I haven't been around much since Friday.