He has now written an article for the local Parkinson's UK support group newsletter about his experiences with Predict-PD, and the most precious gift he can give in the fight against Parkinson's: his brain.
Here are his own words:
I joined Parkinson’s UK many years ago after my sister, Pat Berry, founder and long-time president of the Scarborough branch, was diagnosed as a sufferer. I was co-opted onto the committee as press and publicity officer, a post I held till after a year after she had to give up the presidency because of failing health.
Around eight years ago I received an email from Predict PD, a research group funded by the Parkinson’s UK. They were seeking people without Parkinsons to sign up for the research project. One of the areas on the research list was for unaffected siblings of people who had Parkinsons. Intrigued I put my name forward and was one of 1,000 people put onto the research list.
Initially it was on-line questionnaires and keyboard tapping tests to check for speed of hand movement.
This was followed up by smell tests, as loss of smell ability is a common feature of Parkinsons. This was conducted by a booklet which I had to scratch and sniff to identify one of the listed items. This was later updated by the sniff booklet but giving the answers on-line.
I was visited here in Scarborough by Dr Alastair Noyce, who headed up the research team, where he conducted tests on memory, movement (including walking and turning while he recorded the result on camera), and nerve reactions.
Subsequently I was asked to go to the University College Hospital, department of nuclear medicine, in London to undergo a DATScan. This meant having a radioisotope injection, and then undergoing a 20 minute head scan by a specialist brain scanner. The isotope lights up the nerve endings under the skull, and the subsequent computer readings show up areas where the nerves have died. This is a useful indicator of confirming whether patients have Parkinson’s or some other brain condition.
This year I was again asked to go to London to the Department of Neurology for further tests. This was an ultrasound scan, performed by Dr Richard Rees, who has now joined the research team. A gel was rubbed on to my left and then right temples and the hand held scanner was then applied to my temples, and the subsequent pictures taken were then downloaded to the computer. At one stage I was able to watch the computer screen and could see my brain and the arteries feeding the blood supply.
This means that I have now seen my brain in operation and my heart beating when I had two stents fitted in 2005. I feel very privileged to have seeing how my body works.
I then had an MRI scan on a new machine, which has a magnetic strength 60,000 times more than the gravitational pull of the Earth. I was inside this scanner for 50 minutes while the images were taken of my entire brain, again extremely useful in diagnosing Parkinson’s, Alzheimers, dementia, or brain injuries from accidents.
So I then came to a momentous decision. Predict PD now have around two hours of computer images which they can examine and compare to brain scans of Parkinson’s sufferers.
Brain scans and questionnaires are incredibly useful for researchers. However, having the real thing to look at is the only way to unlock the real secrets of the brain, and to allow specialists and tomorrow’s specialists to advance their work in helping patients.
So, though this can be a very private thing which most people would probably not be prepared to talk about, I have signed up that when I die my brain will be donated to the Queen Square Brain Bank for use by the research team. This is a basic pathology procedure that leaves the body with minimal visual damage. The eyes are not removed, and the body can be viewed without anyone knowing that the procedure has taken place.
As I have left instructions that I am to be cremated and my ashes buried in the family plot along with my sister and parents, I decided to make this donation rather than destroy something that could be useful to the research team.
Although at 79 years old, I do not apparently have any detrimental brain conditions, my brain is then useful as a control model which can be used to compare the damaged areas of Parkinson’s sufferers who are under treatment.
I feel an overwhelming aura of peace that part of me will live on after my death and I can continue to be of use to society.
My reason for writing this article is to, hopefully, encourage anyone in the Scarborough Group who is affected by Parkinson’s, to follow me and sign up to Brain donation. After all, it is only by ongoing research that any chance of early detection and prevention of the condition can make effective progress.
Even if only one person joins me in this it will make my decision to go down this route worthwhile.
The Predict PD team is embarking on a further research programme and are currently seeking to recruit 10,000 people without Parkinson’s to extend the research and help find ways of identifying Parkinson’s at the very earliest stages. If you would like to sign up for this the contact is support@predictpd.com
For any member wishing to join me in the Brain Bank donation the contact email for the information details and application form is : l.haddon@ucl.ac.ukor telephone 02078378370 and ask for Lynn Haddon.
Dedication such as this is rare and R Rees deserves all our thanks for it.
ReplyDeleteI would like to express the hope that an answer to PD is found well before his donation is taken up!
Just one question: does the DATscan show deceased neurons or merely inactive neurons? Can it show the difference? The question is relevant because of our experience with a person recovered after a diagnosis of vascular dementia with Alzheimer's. This person's memory, cognition and abilities seem almost unaffected which implies recovery of neurons which cannot therefore have been dead although that is the usual assumption. It is possible a similar situation pertains in PD.