Good evening all (Yes I know it is likely to be some other part of the day with you but I have a weird sense of humour)
Some time ago I gave a blood sample to Cardiff to keep a record of my DNA and other details. And more recently I had a letter asking if I would be interested in taking part in a research study which involves a technique called [u]fMRI Neurofeedback[/u] in Parkinson's. (Well that should have some would-be professors interested)

I duly replied in the positive and went back to sleep.
Start again in 2012 and eventually I was asked to go for an appointment to discuss the study. Wednesday 4th April 2012 and I was in the outpatients dept., where no-one knew anything about me. (I don't blame them) 2 hours later and I have had a part physical, part IQ test, been asked to draw a clock, discussed my lack of health and given a resume of what they planned. I was accepted. (I think they must be desperate but what do I know - I volunteered!!)

With little or no risk I am a willing guinea-pig. It might take some time but I will try to keep you advised of what happens to me. I hope that a few more join me - maybe you if you are local? Next chapter should be a visit to the MRI scanner in about 2 months. (I think searching for a brain to start with) A total of 4 sessions to look forward to and then report back. (Sorry but you will have to wake yourselves up to keep track) I was advised that they had had some success with this technique in other parts of the country and that is very encouraging.

Keep smiling - It prevents a frown from forming !!!!!

Welcome dogsbody66
I'm glad to hear you are supporting research into Parkinson's. I think its a fantastic way to help the researchers and its worth remembering that they need people without parkinson's as well as PWP.

You may be aware that there is a list of trials in the research section of this website.

I have taken part in one trial using fMRI and I enjoyed it. A few friends have done similar. Last week saw the launch of the tracking Parkinson's study which is looking to recruit PWP who were dx in the last 3 years OR under 50 years of age.

I look forward to hearing how you get on

EF

p.s. If they do find a brain you could consider donating it to the brain bank too.

Have they really got a magnifying glass big enough??
One the size of a pickled walnut (I used to like eating pickled walnuts) might not be tooooooo bad but if all they can find equals the size of a pea or even a split pea I wouldn't like their job.
It is good to be able to have a smile, even when the subject is so close to ourselves and not only our future but many others. But one day there will be smiles and smiles of smiles when we find a cure for even just one part of Parkinson's.
In the mean time :-
Keep Smiling - It makes them wonder what you are up to!!!!!!

Dogsbody66 hello and welcome your positive outlook brought a smile to my face (to late for me to be worrying about the odd wrinkle)

Well done you for taking part in the research......keep up the good work

Radz x

Unconfirmed reports have whispered in my ears (Oooooopps wrong subject - I'll just have to leave you to guess but it's not for the under 50's)
Sorry I will read that again :- I have heard on a reliably unreliable grapevine that there could be a slight delay pending funding. [I think they need more than 10 x 50p pieces to get the scanner to work.]
This when we test our own patience and ask just how important is this research ? And the answer is inestimable and to any sufferer waiting the answers that this research may provide he/she would say they would want NO delay.
If you are involved with fund raising and in the up to date idiom please "Crank up the volume" figuratively speaking for the "Youngsters" (75 and below).
And for the 'Golden Oldies' (75 and still ringing the bell) "Give it some Welly" with everybody doing their bit of fundraising.

At last a bit of good news. Now what was I told :- The cats had kittens - no, I can't have a big enough brain as I made 2 and 2 come to 22 - urh yes but no, oh yes they have managed to adapt the old mangle to act as a cranking handle for the MRI (I thought that was "My Ruddy Ironing" m/c ) and with a bit of luck work on training our brains could be starting beginning of 2014.
Perhaps not toooooo soon after hogmanay to allow for excesses to be dispersed. I somehow doubt that the researchers 1st language will be Scotch [liquid or verbal] and therefore even the odd, very odd, Och Aye or See Yus Jimmy will almost certainly bring the research to a holt and it becomes start again time. And we haven't even started the first time yet.

Hi,

Are they still recruiting as I can get down to Cardiff easily? I live near Neath/Swansea.

Thanks

Now be fair - I have earlier said they will have a problem finding a brain and you ask a question. I know a nothink !!!!! BUT I might know somebody who has a brain and can answer your seeking of information.
Try calling [I've removed removed temporarily while we contact the the researchers- Ezinda]

Reference fMRI Neorofeedback and Parkinson's Disease - Prof. Linden et al.
I understand they have recruited others for this research but you can but ask.

Diolch

You are very welcome and maybe see you in the waiting room sometime.
If it is anything like A&E when I took my grandson we could take up squatters rights. Perhaps they are making space in the queue before slotting us in after all they would have had to feed us for the last year if we had been there waiting.

Is there anyone else waiting for the same research programme???

Keep smiling - It prevents a frown from forming.