A couple of weeks ago I had a phone call from the the PSPA asking if they could give a research organisation our phone number. I said yes and the call came through yesterday. We are going to answer a questionnaire and Colin is supplying a blood sample. As you see from the attached letter I asked how others from Healthunlocked could join in. The person who phoned and signed the letter was Selina Paul. Unfortunately she didn't Send the information sheet she mentioned but said she has also put some in the post as there are rather a lot of pages to print off.
For others not so far down the line as Colin, there is also a 5 year research programme taking place in about 8 hospitals around the country so if you live within easy reach that is an option.
For anyone interested contact details are in the letter attached.
I'm not Barbara but it was me Selina spoke to.
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NannaB
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Thanks for publicising this Nanna B. D is also taking part in the Prospect study. We filled in an extensive questionnaire and are having a blood test done by our own GP which will be sent to the study. (They didn't mind me doing the actual filling in and D was able to give me his answers). We did it in several sessions as it was tiring for him to listen to the questions and think of the answers. D has always wanted to take part in some sort of study or research which might help further the cause so he is pleased to have been able to do this.
Good job Vicki. it takes alot of strength/stamina to do this kind of thing, like Colin, do report findings about D that are of interest to you and may be helpful to us.Thanks, GoodLuck,
Cool! I live in the US and B does not really want to do anything...sometimes he does sometimes he does not.... Well Goodluck with it all. Goodluck Colin...Give us your findings that might be helpful to us
George has already given blood and we filled in questionnaire about 6 weeks ago, he joined the trail in March this year, when he went into hospital he had a lumber puncture, and they asked for a bottle for some tests which we agreed to.
I am interested that George had a lumbar puncture because although the neurosurgeon said he would do it, the neurologist told us not to as it `almost always` makes things worse.
Did George have any benefits from the procedure, even in the short term ?
Hi had reply and discussed over phone with John at Prospect. Am filling in consent forms now. Sounds like same study that Yvonne mentioned to me last week. Thanks to both of you.
Not sure why they did the lumbar puncture, no one said it could make things worse, I think they wanted to do it, because his first cousin had PSP, which is strange. Never saw no difference at all.
Tim I think it is the same as George is on, we deal with John, did he sound Irish?
When they phoned me asking if we would be part of the research she said we could either just do the big questionnaire and blood test or be part of a 5 year programme of research. She said C would then have an MRI, lumber puncture and various blood tests over 5 years. I presumed the lumber puncture was to take a little spinal fluid to test. She didn't give the impression it would help in any way.
I opted for just the form and blood test as C has already been diagnosed for 5 years so not sure if he has 5 years left and as he is immobile I thought it would be too much for him having lots of tests.
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Afraid in my own home.
No letter of condolence from neurologist.
Research
