Anyone having problems with their taking sinement
Sinement: Anyone having problems with their... - PSP Association
Sinement
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kittykat58
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21 Replies
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Dear KittyKat58
When my husband was first diagnosed in 2010 he was prescribed Sinemet, he took for about three months but it had no obvious effect, good or bad, on his PSP so the consultant took him off it. He took no more medication for the next 6 years and then he was prescribed an anti-depressant which the neurolgist thought may also help with his aggressive. Then he was prescribed an anti-psyoctic because the psychogeriatrician thought he had frontal-lobal dementia. Throughout the time my husband had PSP none of these drugs helped, in fact sometimes they made his condition worse, if that can be possible.
So what I think I am saying is, in my opinion there is no medication for PSP, but if you think Sinemet is helping you, then you should continue to take it.
Kind regards
Dorothy T
My husband never had problems taking it. When he was first diagnosed in 2010 it seemed to improve his speech but as he doesn't speak any more and Sinemet didn't seem to have any other benefits, the neurologist told me to stop giving it to him. There can be long term side effects. The only medication he takes to help with symptoms of PSP is Glycopyrronium Bromide drops under the tongue to help reduce saliva.
Nanna B
My husband has been taking Sinemet along with the neupro patch for seven years . 8 kept saying it didn't seem to be helping and they told m he was doing fine . They don't come home with you do they .
I told thm this .
He has slowly gone down hill and has been housebound for three years . We have continued with the med s afraid of any consequences of stopping them .
We recently stopped using the patch . He became less obsessive straight away and I felt less stiff ..mHe was also hallucinating . and poor speech .
Thre days agao I also stopped the Sinemet . he is still less stiff and easier to wash and dress . In some ways better but having great difficulty in keeping his eyes open and being interested I anything ..
I have been trying the atropine drops for the drooling not sure about them though really . He seems to be so sensitive to a lot of medication . mare the bromide drops working for you .
It's such cruel illness for both the person who has it and the one who cares long with the rest of the family if you are lucky enough to have one . I daresay some are not so fortunate .
It's amazing . WHERE DO WE FIND THE STRENGTH FROM .
The patches behind the ears gave my husband terrible hallucinations. After a while he developed a rash and blisters behind the ears so I stopped him using them and the hallucinations stopped immediately. The Glycopyrronium Bromide does help but he hates it and grimaces when I squirt it under his tongue so if he is alone with me for the day I only tend to give it in the morning. He has it 3 times a day if we go out. I always ask him if he wants it and take notice of the thumbs up or down. I tried it to see how bad it is and apart from it being slightly salty, think it is OK.
Personally I find my strength from my faith in God but others who think differently from me find it as well so I suppose we all find it in different ways. I'm just grateful we do find it, wherever it comes from aren't you?
Take care.
Nanna B
Yes I certainly am glad . Only recently started to use the atropine drops and I am not sure about them . they do seem to help but I find it a bit difficult to get just one drop . They are eye drops really but also used for the drool .
My husband is house has been for over two years , not very good at all but since stopping the meds he seems to be a bit looser, for example he can raise his arms and wiggle his fingers he doesn't seem to be quite as Dystonic . Don't know if it's wishful thinking on my part though sometime . If you know what I mean . But he seem more sleepy . I am only giving It in the morning at the moment if the drool is bad .
these meds are a minefield aren't they . In the first place we trust the consultants but after a while we realise that therapy are inclined to treat everyone the same and we are not .
We also stopped the latches because his skin blistered . he had a problem anyway with the skin .
I kept telling the consultant that O didn't think the meds made things any easier for him and they just increased the dose and gave the Patches .
I had trouble making sure C didn't get too much Atropine when he used it. How do you get drops under the tongue of someone whose head is down and who won't open his mouth? In one week On the TV I saw 2 murder mysteries ( I think one was Poirot) where the victim had first been drugged with Atropine, rendering them unable to escape the murderer. I'm sure 1 drop wouldn't put anyone to sleep but I did wonder after that. The medication now is administered using a syringe so I can direct it under the tongue. He still drools loads though so not sure if it's worth doing. The hospice have increased the dose so I expect I'll carry on for now.
Nanna B
hi nanna b did you try the dark grape juice for mucas and saliva mate
its cheap and the taste is quite good im sure Collin would like it peter jones queensland Australia psp sufferer
No Peter, I forgot about grape juice. I'll give him some and let you know if it makes a difference. I hope you are ok and staying upright. Send over some of your sun will you please. It's been raining for days here. Thanks for the grape juice reminder.
Take care.
Nanna B
hi nanna b its worth a try anything is within reason\\\can you tell me if it was colins birthday on the 23 rd of this month mate or was I dreaming it I have the 23 rd written down or I should say I have the 23 rd marked in on my computer if it was ive missed it mate sorry about that just in case i have slipped up anyway heres a birthday song for you colin HAPPY BIRTHDAY TO YOU\\HAPPY BIRTHDAY TO YOU \\ HAPPY BIRTHDAY DEAR COLIN HAPPY BIRTHDAY TO YOU
NOW IF I HAVE MISSED IT YOU CAN HAVE TWO BIRTHDAYS MATE AND IF ITS NOT YET YOU CAN HAVE AS MANY AS YOU LIKE RIGHT NOW NANNA B WOULD YOU MIND IF I USED SOME OF YOUR SPACE
NOW I SAW SOMETHING HERE WITH MY NAME ON IT]]] IT WAS FROM A LADY FROM MACKAY UP NORTH QUEENSLAND OR GENT
NOW I HAVE NOT BEEN ABLE TO FIND IT SINCE AND I DID NOT READ IT ALL IT WAS GETTING LATE A WAY PAST MY BEDTIME AND I THOUGHT I WILL EM YOU TOMORROW WHICH I WOULD HAVE DONE IF I HAD FOUND IT MY FRIEND SO ITS PURELY UNINTENTIONAL THAT I HAVE MISSED YOU PLEASE TRY AGAIN AND WE WILL HAVE ANOTHER GO AT IT THANKS MATE PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER
THANKS FOR=THAT NANNA B SEE YOU MATYEY REGARDS TO COLIN TELL HIM TO HANG IN THERE MATE THERES BETTER TIMES AHEAD
PETER JONES QUEENSLAND
Yes Peter Jones, Colin was 67 on 23rd. I don't remember mentioning it. I sang your message to him and he laughed. We had a good day with our youngest son and daughter in law. His thumb went up when I asked him if he had enjoyed the day. I hope you find the lady/man from Mackay. I've been looking back to see if I can find anything but with no success. I hope they read this page and get in touch.
Hope your day is good.
take care Peter Jones Queensland Australia.
Nanna B Kent UK
THANKS FOR YOUR REPLY NANNA BUT I THOUGHT WITH PSP WERE SUPPOSED TO FORGET THINGS MATEY ACTUALLY YOU DID MENTION IT AT JILLS PARTY AFTER YOU DRANK THE WATER MATE OR WAS IT WINE CANNOT BE TO SURE I KNOW MY WATER HAS JUST HAD FLOURIDE PUT IN IT YUK BUT THE BEER IS BETTER ON A HOT DAY MATE\\\ REGARDS TO COLIN TELL HIM\\ HOPE HE IS BEHAVING HIMSELF THAT SHOULD GET THE THUMBS UP NANNA OR DOWN SEE YER PETER JONES QUEENSLAND AUSTRALIA PSP GUESS WHAT I FELL OVER IN THE ROAD RIGHT OUTSIDE THE DRS SURGERY NEVER HAD THE STRENGTH TO GET UP PROPERLY AND FELL OVER AGAIN A BIG 4 WHEEL DRIVE WAS COMING DOWN THE ROAD BUT SHE SAW ME FALL AND STOPPED HER CAR AND CAME AND PICKED ME UP OR HELPED ME UP AND THEN DISAPEARED INTO A HOUSE
WHERE SHE CAME OUT WITH A NURSE WHO GAVE ME THE ONCE OVER THEN A BLOKE CAME OVER AND THEY PROMPTLY MARCHED ME INTO THE DRS SURGERY WHERE I HAD AN APPOINTMENT ANYWAY BUT I DO NOT THINK ANYONE UNDERSTOOD ME WHEN I TOLD THEM I WAS GOING IN THERE ANYWAY PETER JONES QUEENSLAND MATE BUT I WAS
ONLY SHOOK UP NO BIG DRAMA SEE YER
They probably thought you didn't put enough water with it. If you must fall you chose the right place. Glad you weren't too damaged and also very pleased the driver of the 4 wheel drive was far enough away from you to stop in time. We don't want a squashed Peter Jones do we? Hope the appointment went OK and you are now safely back home. Colin is at the hospice today so I've been playing my uke with a group of women. More laughing than playing and the husband of the household went into the garden in the pouring rain to do gardening.....think it tells you what we sounded like. On the way home I was wondering what to put with my salad, then I walked past the fish and chip shop. Going to sit down with my cod and chips now.
Bye for now.
Nanna B
could not take it - made me vomit so had to take another tablet for that marytea13
We tried it with my wife but it didn't do anything (work). There are some long range effects of using this drug that many aren't aware of. Check with your neurologist or Google "Sinement long range effects" or "Carbadopa long range effects". Only you can make the decision if it's working or not which will lead you to the right decision to continue it. I've heard of it making some people dizzy but don't have first hand experience with that. Jimbo
My husband takes it like clockwork. If his dose is given late, he really knows it, it helps him with the stiffness and pain that comes with ridgitity. He has been taking sinemet since he was originally misdiagnosed as having Parkinson's disease back in 2010. Since then the dosage and frequency has been altered a number of times to fit his needs and comfort.
joan
Sinemet was tried on my husband for a month and it made no difference and so was discontinued.
The neurologist said he didn't think it was going to work but it was worth giving a go.
Peter3.
Can someone explain what sinemet is please? Don't think this have been prescribed to my father?
in reply to Ld60
Google it, you will then get all the info, and google for side effects of long term use. A
I was given Sinemet because my neurologist thought it would help my walking - it did nothing but it made me vomit - so stopped it which u have to do gradually as u have gradually built up to your dose. Marytea13
