A desperate shortage of brain donors is hindering scientists searching for a cure for Parkinson’s Disease.
In the week that a nationwide appeal for donors is launched, SARAH JONES speaks to one Hampshire woman who has already signed up.
TELLING people you’ve decided to donate your brain to science doesn’t tend to come up in your average conversation. Subjects don’t get much more sensitive than this, so many may never realise the option even exists.
But Parkinson’s Disease sufferer Susan Dornom is not afraid to discuss one of the most important decisions of her life.
The 60-year-old from Southampton has pledged to donate her brain when she dies to help vital research into the disease that is blighting her life.
“It’s a very personal decision and I don’t think people necessarily want to talk about it,” she says.
“You are talking about something that’s going to happen when you die and no one wants to think about that, but I think it should be talked about.”
The grandmother of six was diagnosed with Parkinson’s – a debilitating and progressive disorder of the central nervous system – five years ago.
It affects the right side of Susan’s body: her arm constantly shakes, she has problems keeping her balance and suffers from constant tiredness.
There is currently no cure for the disease but research using donated brain tissue has already led to major medical breakthroughs in the treatment and understanding of Parkinson’s.
This includes the development of anti-Parkinson’s drugs which has revolutionised the way symptoms of the condition are controlled.
Across the country only 1,000 people are currently signed up to the Parkinson’s Brain Donor Register.
The Parkinson’s Disease Society (PDS) wants to double this number by the end of 2009.
While there are around 8,000 people with Parkinson’s in the south east, Susan is one of only 51 registered donors in the region.
Susan had never heard of brain donation until she attended a talk given by the Parkinson’s Brain Bank. Based at Imperial College in London, the organisation retrieves, stores and makes tissue available for research.
Susan immediately knew she wanted to sign up.
“It’s not going to help me and my generation but with two daughters and six grandchildren, somewhere down the line it could help one of them. It just made sense to me.”
Naturally, her family were shocked when Susan, who lives in Sholing, brought the paperwork home.
“I explained it was something I desperately wanted to do.
I wouldn’t say they were over the moon because they knew that when it happened it would mean mum was dead, but they could understand.”
While Susan, a former recruitment manager, feels passionately she has made the right choice, she knows it’s a personal decision that may not be right for everyone.
“I think some people feel differently about donating their brain than they might about their other organs, as it’s where their thoughts are created.
“But I already carried a donor card and, to me, the brain is just something else that can be used.”
Respecting his wife’s wishes, Susan’s husband, Chris, 63, has already signed the consent form for her brain to be removed when she passes away.
It has to be done within 24 hours of death, so time will be of the essence.
“It was hard for Chris to sign the form, I think it would be for any relative to sign but, as I said to him, that’s what I want to happen. I said I would come back to haunt him if he didn’t!”
● Anyone can join the PDS Brain Donor Register by telephoning 0808 800 0303, by visiting parkinsons.org.uk/brainbank or emailing pdbrain@imperial.ac.uk
● The Solent Early Onset Parkinson’s Support Group next meets on Saturday, May 2, at 2pm. For more information, call Mary Shorter on 023 8044 9652.
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here