On Friday I spent 3 hours at St Woolos Hostpital, Newport, Gwent.
The attached image explains the project and what is involved.
Are there any other members of this forum doing this ?
A video was made showing me being tested for movement functions and will be used to train young doctors in what to look for in patients they may come across.
A lot of cognitive questions/tests were also done.
Haven't seen this at all but an excellent step forward. Well done you for taking part. Jx
I had this from my sister.........
'The text mentions Drs Huw Morris and Henry Houlden They are at University College London (UCL- the logo is at the top right of the piece of paper) and I looked them up and they have published some interesting papers about the genetics of neurodegenerative disorders. The UCL Neurology group is really good- one of their top people just won a "breakthrough" prize. I will do some more sleuthing and see if the people at Duke know about these people and any other names. Anyway, it is a serious hard core science study and you are making a strong contribution by being willing to take time (not everyone wants to do it).'
I agree
Liz is on the UCLH study.
From the comments I have heard they are looking at a Stem Cell solution appart from other studies they might be doing. They told us it would take in the order of ten years.
However since then I think there has been some sort of international scheme set up to stop duplication of research programs and to co-ordinate them. Its wonderful that they can do that.
Well done Bargiepat. It's the participation of people like you that will eventually find a cure for these horrible diseases. My husband always wanted to take part but is now too ill. However, he has signed up to donate brain tissue when the time comes in the hope that others won't have to suffer. Thank you to everyone who is doing anything to find a cure for these illnesses.
Margaret
Thank you Pat, it’s very very good of you!! Well done you x
Thank you very good, we see Professor Morris at queens square, he is a wonderful doctor xxxx
Patrick well done for taking part. This is so needed to find a cure, or at least something to halt the progression of these conditions? You are officially my hero now!
Marie x
I am blushing now..........
Patrick well blushing is very attractive you know? 😁.
Oh by the way I was at the canal the other day seeing a group of school children go on a barge! I did think of you and thought how wonderfully peaceful it was there. No wonder you had such a good holiday. Maybe the rest of us should book holidays on the canals?
Marie x
Thank you, so very much. I am 77 years old mom, and hope before I meet my maker that there will be a break through on the cause(s) of PSP. It took my son at 55. I believe its caused by genetics or errant mutant cells. Maybe this study that you have agreed to participate in will provide some answers.
MIL GRACIAS........
Gosh, if stem cell can halt or cure it, I will be a peace.
I also took part in this study as a healthy volunteer at UCL. I did the same cognitive tests and gave blood and a very small piece of skin. My husband lived ,and died, with PSP . If we don't support the people doing research there can not be a cure , or even secure diagnosis.
He left his brain to be used for research and I have done the same ,when I don't need it any more.
Hello Bargiepat, I'm doing a very similar study in London Health Sciences Centre in London, On Canada... it concludes in 3 years.
I think I might have PSP
Research and Science 
Body for research 
Have I gone completely insane???????
