I am new to posting here...I have been reading all your posts learning and waiting in the wings until I could find something genuine to contribute and maybe help.
My husband Roy was diagnosed June 2013 with CBD after 2-3 years of extensive testing and re-testing!
From the beginning of his diagnosis one of the meds he was put on was Sinemet to see if it would help with the increasing stiffness in his limbs.it became difficult to know after a while if they had any or no effect ,especially as everything about his condition seemed to be deteriorating! After seeing a new Consultant at the end of last year, it was decided that we would decrease the Sinemet gradually over 6 weeks .(he was taking 3tablets 3 x per day). Unfortunately, Roy's mobility and stiffness have been worse since not taking Sinemet ,or so it seems! ( he has to rely on a wheelchair and it is so hard to move his limbs)and so now, I have been told to start again with the Sinemet bringing it back to 3tabs3xper day!
Sorry if this sounds a bit long-winded but I will let you know if there is any more improvement. All this is so tiring isn't it? But I suppose 'IMPROVEMENT' is all we can hope for( other than a cure!)
Hope this helps and perhaps I will join in a bit more now, letting you all know a bit more about us.xx
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DenB
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Hi DenB, where have you been? It's such a help to be able to "talk" to people, who ACTUALLY know what you are going through! Still, at least you have been reading our blogs, but we need you! All of us has something to contribute, every little detail will help someone.
Thanks for your reply. I suppose that's my biggest worry, what would happen, if the Sinemet is working, would he still get benefit from it a second time around? Please, please let me know if your husband does show signs of it working again. S's movement is still quite good, better than its been for years, but the improvement has come from his exercises, not the tablets. Although, we have just gone out and bought a walker that converts to a wheelchair, he is struggling to walk with a stick, but I still feel he is able to keep walking for a bit longer. Hopefully, this will help prolong his mobility!
Please, please keep posting, love to know where you are? I get so much out of this site, just knowing everyone is out there, to help me if I need it, just relieves that awful feeling, "I am on my own, nobody knows and nobody cares!!!!"
I am just waiting for a friend to arrive for a visit.......we do love visits from friends and family makes the day a different day....anyway while We are waiting I thought I'd just tell you that we live in Higham, which is near Rochester in Kent. We are still relatively youngish 58yrs both.
Only found this site last year sometime after searching for information about CBD and to hear how other people cope and manage this awful disease which has changed our lives, like all of yours in the community, until it seems just surreal to me........I look back just 4or 5 years ago and think about the walks we would take and the talks we would have....those days were really golden and I never even knew it! My husband doesn't know as much about CBD as I do and I can't tell him the awfulness of it because he is depressed enough most of the time already! He won't know that these are the good days because it is only going to get worse but hey, I try to make sure we make the most of what we can do now!
For what it is worth: Sinemet really just made my husband worse. Our last neurologist had us discontinue most of Bob's meds. His medication was expensive (no insurance that we can use away from the USA (bless them), and the side-effects were complicating things. He was on two dementia meds that were useless. So now he only takes meds for his seizures and sleep.
I as usual am going to keep a really good eye on my husband to see if there is any improvement at all. I know the doctors all say that these conditions effect people differently well it may seem that the medication may do the same.
Can you say what side effects your husband had from taking Sinemet? I can't say hat I have noticed any side effects in particular but maybe because he has always taken them until recently when we stopped, I just thought that it was the normal degeneration of the disease, with him.
Hi Denb, my husband was on sinemet when it his illness was thought to be Parkinson's, it did not help him at all, he was changed to Stalevo just months before he was further diagnosed with PSP. He was told to continue with them although the Consultant said he couldn't guarantee and success. Although his stance is rather rigid, his limbs are not too bad. It's hard to know whether it's just how he would be anyway or whether they are helping. The only way would be to stop them but we couldn't risk any bad effects so we will carry on while things are reasonably ok. X
Your thoughts are exactly the same as mine, about this.it is so difficult to know if the Sinemet is doing any good or would Roy be the same without it? Well, he is back on the Sinemet and I am trying to monitor any effect good or bad but as I increase the dose back to what it was originally.....I'm not sure I'll be convinced either way ,the way things are going! I seem to think that the Consultant will ask me and I will say, "I'm not sure if there is any difference" obviously I am hoping otherwise!
It's also so difficult to monitor because for us each day is different, good days and bad days, maybe between us all we will get some results, I just feel that in the 4 years my hubby has been ill, 6 visit to the consultant, 15 mins each time, however can they know or advise....we probably know best most times x
Hi DenB, My husband was put on Sinemet immediately when he was diagnosed in March. The first dosage 3 X a day didn't help much but when I took him to another neurologist, she upped it to 4 times a day along with the dosage increased as well. This made a huge difference in him being able to move. Yes a cure would be so nice wouldn't it! Hope my email straightens out so that I can keep up with what is going on with everyone.
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Trying Sinemet 
PSP and HD B1 Thiamine
