Becoming a research guinea-pig


#1
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 !!!!!

#2
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 [u]without[/u] 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 [u]tracking Parkinson's[/u] 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.

#3
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!!!!!!

#4
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

#5
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) :imp:
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). :sunglasses:
And for the 'Golden Oldies' (75 and still ringing the bell) "Give it some Welly" with everybody doing their bit of fundraising.

#6
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 :flushed: ) and with a bit of luck work on training our brains could be starting beginning of 2014. :grin:
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.

#7
Hi,

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

Thanks

#8
Now be fair - I have earlier said they will have a problem finding a brain and you ask a question. :fearful: I know a nothink !!!!! BUT I might know somebody who has a brain and can answer your seeking of information. :bulb:
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.

#9
Diolch

#10
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.

#11
Somewhere in the previous professional style reporting (Load of codswallop)I appear to have tis-myped the year when this study was due to commence as stating a possible starting in 2014. Well according to the letter recently received the likely start date should be in 2013BC or 1032 or 1302 or 1203 or 1023 or 1320 (Do you think I could be loosing my marbles) or :laughing: looking good is 2013 :smile:
The letter does give an intimation that indeed it should be the early part of next year [u] (YES THAT IS ""EARLY"" NEXT YEAR !!![/u]!
With the missive of such information came a copy of the updated version of the information sheet :exclamation:
Subject to mathematical evaluation of the conceivable misconstrued revision of calculation for attendance and transport may offer an accrual or a decrement.
(It means I've got to b****y read and read again to make sense of the 2 sums and THEN gone on neurofeedback when there might not be any neuro bits left!!!!!)
:cry: ooooh me head hurts.

#12
And a "Happy New Year" to one and all (Yawn).
Bah humbug. Now doesn't that feel better !!!!
About a week ago (or maybe everything seems longer than it
really is) I received a telephone call.
You know one of those old fashioned implements whereon you
actually talk to people rather than 'text' a message in non-
grammatically correct sort-of-Yanky-English.:confused:
This was no "Voice of the Balls" and I hadn't won millions but
Leena confirming (what we already knew!!) that the research was
due to start. Should be some-time in March and yet another NEW
up-dated version. (Copy still awaited) Leena also wanted details
of my medications. I think she was expecting 2-3-4 but was mildly
taken aback when faced with taking down the details of 13
(THIRTEEN DIFFERENT) med's and agreed to await a e-mail copy of
my repeat prescription form. [Both pages] And then we expect
another interview to check I am suitable. (Does patience count??)
I am guessing the next missive might be in March. :rolling_eyes:
In the mean time were was I - Oh yes (Yawn, Yawn Snoooooooorrrree)

#13
Dearly beloved we are gathered here in the sight of God to Join together this man and this woman in (Oy Mister your reading from the wrong script !!!! That one is for you son & not for a couple of years at that. Now get your head back to the subject matter - Your BRAIN - I still can't believe they said you got one and worse it still works {Sort of})
Right let's try to get up to date :- I have had a DAT brain scan and they confirmed (In their own gobbl-y-gook) that I have Parkinsons. I did wonder if there was a tis-mype of idiopathic - did they really mean pathetic idiot?? How do I know ????
Did I mention my son's engagement and asking me to conduct the wedding. (He really should check - I do a mother-in-law joke at the end of the wedding:laughing:
AND FINALLY I am off to Cardiff University on Thursday 25/3/13 at 08-00 am for my 2nd assessment, followed by a MRI scan next week, followed by exercises, followed by another scan etc and so it has all started. My days as a research guinea-pig begin. Just a peep-squeaking minute 08-00 AM start, EXERCISES, MORE EXERCISES who volunteered for this. Oh yes I did. What did you do this weekend for the chance of a cure for others ???????:grin::question:
If you are in the EXETER area living or holidaying pop in to the Malt House (Harvester) in Haven Road, ask for "David" the Kitchen Mngr (Used to be called 'Head Chef') and let me know the look on his face as a complete stranger offers congratulations on his engagement.
KEEP SMILING - It prevents a frown from forming!!!!!

#14
Knock knock is there anyone out there ???????
I started this missive in April 2012 and there have been 12 postings.
My thanks go out to 'elegant fowl', 'Radar47', 'tuttapanna'(twice)
for their input.
It seems to have created some sort of interest as there have been
1071 'hits' so far. Has anyone disagreed with what appears ?????
Has anyone volunteered themselves for Cardiff or A.N. OTHER
research ????? :confused:
Apart from the contributors listed above no-one has bothered to
put digit to keyboard. What do you THINK [assuming you do !!]????
Should it be more serious, more jocular, consigned to the w.p.b.,
more theoretically empirical,(look it up!!!).
At this stage I can NOT make it exciting or sexy or mysterious BUT
and I am certain many other who extracted their digits and did indite
their lucubration would like a taste of your panoramic view of the
scribbles offered for consideration.
So please extractum da digitus and (after some thought) say what
you think. [Just remember I held a warrant from His Honour Judge
Brooke-Willis of Derby District Registry of the High Courts of
Justice when I was Judges Clerk - Sorry did that spoil it for you).:imp:

#15
Hi Dogsbody
I’m not on the Cardiff project, but I have just started taking part in the Parkinson’s UK Tracking survey. At three years’ longitudinal study and 3000+ research subjects it is “the world's largest ever in-depth study of people with Parkinson's” (it says here: http://www.parkinsons.org.uk/default.aspx?page=12365).

No exciting MRI scanners for us, just page after page of questions (I think the researchers have an unhealthy interest in our pee, poo and sex lives). Parts of it are interesting in an introspective sort of a way. Parts are scary: you’ve heard of white coat syndrome driving up your blood pressure before you get it measured? There’s a parallel clipboard syndrome which loses you the power of rational cognition whenever you’re asked a perfectly answerable (under normal circumstances) question.

But don’t let me put anyone off. Like Turnip (http://www.parkinsons.org.uk/pdsforum/posts.aspx?forum=daily-life&topic=chartiable-events) running marathons in aid of people who can’t run marathons is not my cup of tea. But this is something I can contribute to and hopefully help make a difference for future PwP.

Regards

Semele

#16
I bow my head to you Semele for your reply to my challenge and offer my sincere thanks and congratulations for your contribution. Also showing a sense of humour it encourages others to think about joining in our fun and games. I am certain that there are a lot of sufferers and supporters that can no longer do a sponsored walk or run but want to be involved. Even those who are toooooo effected by their Parkinsons to be able to join in research might consider using their appealing looks and nature (Anything from Cor S***y through to Aaawww how cute ??) and get somebody else to do it for them. It's too b****y obvious I don't fit anywhere between S***y and definitely not cute. :frowning::rolling_eyes:
I can feel the vibrations coming back to my computer from the laughter of whoever is checking my missive but I don't care there are others just as bad as me out there in the mists (How do you think I keep hidden) and I give thanks for them.

#17
I took my daughter and grandchildren away for a week to Selsey and ended up visiting Sir Robert's Hospital in Chichester. :disappointed: Now come on you can give a bigger AAARRRHHH than that. On my return I make contact with Cardiff to re-book my sessions only to be told that one of the team is to go on holiday.
Wishing to show polite interest I ask were and how long - BAD mistake - now I am left comparing 1 week in Selsey against 3 [YES THREE] weeks in Australia. And I bet she doesn't end up in hospital whilst there. I didn't get an invite so that we could do some of the research on the beach. (Any chance ???????):sunglasses::flushed:
So if you have already volunteered you can turn over and snore until July. OR you can 'Post' a reply to all the previous and above codswallop. Go on tell it how it is, if you have laughed or cried or got angry or just confused that they let it go to print.
[u]BUT[/u] if you are near Cardiff and have not yet volunteered at least get some information, consider how you might make a difference and join us. This applies to sufferers AND Carers AND supporters. If you not sure that they can use YOU ask!!!!:bulb:. Call Parkinson's London, research dept. for more details AND let me know what happens. (Together with the odd couple that read this)

#18
:grin:
Hello Dogsbody 66, Perchance you came by your screen name when travelling route 66 at high velocity and colliding with a stray canine , OR NOT? I tried to wade through the confusing amount of info provided in your postings but began to feel
suicidal and had to desist , I mean no criticism by this indeed its nice to see that I have someone to compare silliness with.
I happen to think that being silly is a very important side of the war or wor if you live in Geordie land, against PD , and I always try to be extremely silly at least three times aday or even A day,for instance I recently applied for planning consent to build a oil rig in my back garden just to see how silly things would
become and to my utter surprise and disappointment I was refused on the grounds it would create too much noise and dust , its only a 1/24 scale model , these people in power eh 66, I am going ahead permission or not ,they can whistle Dixie
I hope you have a very silly day
Mad Mick McMad of Clan McMad

Fed:grin::sunglasses::fearful:

#19
Good morrow fedexlike with a colloquial greeting which if you are a Mick should be totally irrelevant - All fare coats and nay nickers to you to.
Regrettably your assumptions as to my 'handle' are misconstrued. Although I have driven in the USA not on route 66. In the UK I have roughly calculated that I have driven over 1 million miles during the last 45 years + and therefore quite possibly travelled the A66 at some time but not significant enough to use in my Parkinsons Forum excuse for a blog.
Thank you for your response for that shows 1] There are persons still alive out there and 2] They actually read the rubbish that I exude. I am glad that it provides some amusement as we all need something to give us a boost from the problems of living [if you designate it as such] with the scourge of Parkinson's.
We can each benefit from the support of each other, our branch or group, regional office, London H.O., research etc. AND it may sound strange but we can get a benefit for ourselves when we support any of the aforementioned.
Keep up the good work and thank you again - it might get someone else to tap a response. (Even it's only along the lines of "You dozy *#$%" {repeatable versions only!!}):rolling_eyes:

#20
And now the latest [u]NEWS[/u]
They met on an unlit railway station with the wind howling down on them off the moors. Even the moon was hidden by storm clouds and the British Rail Buffet tea seemed to loose all heat as the cracked cups were placed on the table, The doc was just about to make her business known when :- "The next train arriving at platform 1 is for crackle crackle"
OK so we met on a cloudy Wednesday the 3rd of July at Cwmbran station when it was still light at 17-45 pm and had a natter over a cup of coffee.
THE dates for THE research (YES - "THE" DATES) Starting off with a scan and assessment starting at time for the dentist. [When it's 2-30 = tooth-hurty]
{I've been using that one for years but I normally get some sort of response. Are you alive out there reading this??????????} There are two more dates for assessments and another scan. And now the bad news she ad a list of [u] SIXTEEN[/u] SESSIONS (Yes 16) sessions on the WiiFit. I know I have been to sleep since this started but did I really agree to all that excercise. Any helpfull suggestions as to how I can plead insanity? (Stop laughing and start writing)