Hello I would like to introduce myself.

[MaryMyrtle]

My name is Mary Myrtle and I was diagnosed with CBD in January 2013 but had symptoms well before that. I am new to this forum and would like to share information with you. I have tried a range of medications such as baclofen etc and none of them seemed to have any beneficial effects. I am currently taking amantadine and sinemet but its difficult to know how beneficial these are. I am wondering if anyone has tried ropinirole and also botox? I am thinking that botox might help with my right hand which is sorely affected. My speech is not good and I am awaiting speech therapy. I am wondering if anyone has found any success with this? I am looking forward to hearing from you and getting used to using this forum!

Mary Myrtle

[easterncedar]

Welcome, Mary Myrtle. Sorry you have to deal with this diagnosis, but glad you have found this place. I couldn't cope without the help this community provides. My sweetheart was diagnosed with psp in 2011, so his experience with medication may not have ANYthing to do with yours, but he did try amantadine and sinemet with no appreciable effect at all, and the baclofen made him woozier than he already was. Speech therapy has been VERY helpful and I encourage you to give it a try as soon as you can. Good luck, and stay in touch. Easterncedar

[DoreenC]

My mum has taken ropinerol quite a few years now. The only thing it seems to help with is the restless legs. It does work very well for that but as far as we can see nothing else

[DenB]

Hi Mary,

My husband was also diagnosed in 2013 but has had symptoms since 2010.

He tried Sinemet for a while.It was increased gradually and then decreased and finally stopped taking because I could see no difference and the same for Baclofen.Speech therapy was no help at all, he couldn't use any of the apps that they suggested because of cognitive problems which come with CBD.

I haven't actually heard of ropinirole but after reading about it, I noticed that it said that it was a drug used to treat Parkinson's.It is my understanding that drugs used to help Parkinsons are usually found to be unhelpful in treating CBD but maybe others would beg to differ.My husband has never been offered Botox, not sure if it something that would be considered at any time.

Are you in the UK or US? I am in the UK.

Can I ask how you are doing?

I'm not sure if any of what I have said will be helpful to you but if you want to ask me anything else, please do.

D X

[NannaB]

Welcome Mary Myrtle, it's sad you have had to join this site but you are very welcome. I can't be much help to you with this as Sinemet is the only medication my husband has taken. It appeared to improve his slurred speech at the beginning but not for long so ge came off it. Nothing to do with PSP or CBD but my nephew's daughter has cerebral palsy. Her left side is very weak and her hand was clenched dispite 9 years of physio. Just before Christmas the family came to stay with us and she greeted me with a high five with her left hand completely outstretched. She'd had Botox. It was amazing so I hope it helps you as much as it did her. She was told it would only last about 3 months but will be given more when necessary.

Speech therapy didn't help much because my husband didn't do the exercises enough and I was getting fed up with the sound of my voice nagging him but if you stick at it, I'm sure your results will be better than his.

X

[Katiebow]

Welcome to this forum Mary, I'm sure you will find it very supportive and informative. My husband, Ben, has psp and was on Sinemet with no apparent effect and now Amantadine which I don't think is helping. I'm not sure about the helpfulness of Botox but reports seem to indicate it is very useful, so why not give it a go. Ben is just starting with the speech therapist who luckily has special interest in psp, as NannaB says, because Ben doesn't seem to be able to retain new instruction, not sure how useful it will be but willing to give it a go. Sure we will be hearing from you soon to let us know how things are going. Kate x

[easterncedar in reply to Katiebow]

Right about the memory, but strengthening and training the muscles (SO MANY muscles!) used in speech and swallowing has been a big help for my sweetheart. I am really glad we started with the new speech therapist. She's great.

[ketchupman]

My wife has PSP and has been on and off of Sinemet and Amantadine numerous times. But I keep putting her back on them both, as I can definitely tell a difference over a period of time. When her neurologist told me in December that her system was shutting down and to bring in hospice, I stopped giving her all drugs, with hospice's guidance. For the next 30 days, Kim would not speak, would only stare at me. She would answer by doing a slight squeeze of my hand. Her legs were limp and could no longer ambulate around our home, so we had to use the wheelchair 100% of the time. Mid-January, I decided to put her back on these 2 drugs, and also Artane (Trilhexaphyindyl), another drug she was previously on and supposed to help with stiffness. Within a few weeks Kim was back to her old self. Our family and friends are just amazed. Between these drugs and all the prayers that have been lifted up for Kim, that's that only 2 things that could have made this happen. So while her doctor has always said these drugs probably aren't necessary, I totally disagree. Kim has also had several doses of Botox to the eyes, since PSP patients have major issues with keeping both eye lids open. Unfortunately it sometimes works too good and then she is unable to close them, even at bedtime. But it does eventually wear off. I've had CBD patients in the support group that I lead and I know they have had issues with their hands and not being able to effectively use them. I don't recall if they ever received Botox or not, sorry. My last CBD member passed about a year ago. Now I just have a bunch of men with PSP in my group, besides my wife. Take care!

Ketchupman

[Hidden]

Have you heard of Neupro, also known as Rotigotene? I tried my father with this to good effect. I would be very careful with sinemet, prolonged use leads to spasms and painful contractions which once established cannot be got rid of. Neupro comes in a patch. I can only say this was the best drug we found for relief from it all.