I wanted to share some good news with you all. For well over a year now my mum has not been able to speak to us and we have explored so many avenues trying to communicate with her. Its been horrible and I think we all felt that we had lost her.
However, she can now speak to us in phrases and even sentences that we can understand! It is completely wonderful for me, I really do feel like I have my mum back. Sometimes we have to ask her to repeat things but the improvement is remarkable!
It could be as a result of a change in medication. She has been taken off a strong sedating medication called trazadone and put on amitriptaline. She is also on the Brighton trial of Davunetide but I am too cautious to say it could be as a result of that as we don't even know whether she is on the placebo or the medication.
Whatever, I am loving it. It makes everything else easier to bear, just being able to have a chat with my mum again.
Cathy
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CateT
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That is fantastic news. I can imagine that it is wonderful to have those chats again with your mum and it does make other things a little easier to cope with. Take care of yourself and my love to you and your mum
How wonderful for you all. It is so encouraging to hear of improvements for people who suffer from PSP, however small. I am so pleased for you and hope your mum continues to maintain this progress. You must be jumping for joy to see such a slight improvement. How lovely.......enjoy every minute!
Hi Cathy...such good news is rare with PSP. I'm so pleased for you. Israel posted a while ago that his speech & walking had improved since he was on the Davunetide trial. Frank started on the trial at Salford Royal 2wks ago so will let you know if any improvement. His speech isn't good & his limbs, especially arms, are so stiff I sometimes struggle to move them. He still has a powerful grip which doesn't help me either!!!!!
Just sent an email to you and then see this news here!! Thats so wonderful! I am really thrilled to hear that, please send your mum a big hug from us all here who are sharing in yours and her happiness of being able to communicate more. So we both had good news today!
That is super news as it is great to hear any good news relating to the condition. My mum is at an advanced stage of the disease and her speech is all but gone except we notice when she has an adrenaline rush - a new visitor, a fright or maybe if she is particularly agitated. When she can speak on those occasions I am reminded there is a voice there and do keep thinking some drug may be a cause or provide a solution. I read you comment with interest and will show it to our doctors to see if it may be useful in her case.
These pieces of information swapping are invaluable, so thanks again.
I'm trying everything to get my dad to communicate with me again - I really miss him and I can't remember the last time I heard his lovely laughing voice! I'm so glad you found this bit of happiness - I wish they'd find something that would work for everyone... Dad unfortunately had zero positive result from the noscira trial, and is too far advanced for davuntide... hope good results come soon from that. all the best, thinking of you. fran x
Brilliant to hear such good news. I'm tempted to see if dad can get hold of some amytriptiline! is that an anti-depressant?
Fran, my dad also took part in the trial and had no joy. Has your dad opted to continue taking the real thing? Which site was he at? My dad was in Liverpool. Has he found out if he had placebo or not yet?
Dad was at Newcastle - he finished the trial in May after a year. We had such high hopes, obviously (I was actually living in Spain at the time, and remember thinking to myself that I would petition the Spanish gov to release the drug early so that Dad wouldnt have to suffer a relapse!!) but Dad really didnt show any difference. I really do suspect he was on the placebo but we don't know...how can we find out? I didn't know that they could continue to take the real drug - no one told us. Has your dad - what has the outcome been?
Dad has been on amytriptiline - it's helped him with sleep a bit I think. No effect on speech etc though. It's so hard trying to find things that help, isn't it?! let me know how things are.
Hi Fran, the neurologist at your dads trial centre should be able to find out for you. They can only reveal when the last person finishes the 1 year trial plus 3 month wash out. It's interesting you say that you didn't know there was an option to continue with the "real thing". I know it was something that mum and dad started to push for early on, and it got a bit sticky with the Company when they asked for it, The neurologists also said no one else had said they wanted to continue with the drug. I just couldn't understand why not. When mum asked the neuro, he said to her "why do you think?" . Perhaps it was a money / effort issue? Or perhaps they know it doesn't work. If it's any consolation, dad also seemed to not improve and got much worse whilst on the trial. He definately took a big step down (loss of speech / terrible movement / Balance problems) when he stopped taking it (probably a co-incidence) but since re-taking it has only got worse again.
Such a terrible shame to have had the hopes dashed, I dont know about you but it did provide promise in an otherwise bleak situation for a while. I'm wondering now if we backed the wrong horse so to speak, not taking part in Davunetide, but I guess it was a timing thing.
Lovely though to communicate with someone involved with this trial.
that really is good news. It's unusual to get a positive result so all the better. We had to use a picture board with my dad and then even pointing got too much and you could see his frustration at being unable to speak so it is great for you and your mum. I wish her and you all the best and hope the improvements continue, it would be great if it was the meds so keeping my fingers crossed for the trial.
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