Date: 05 December 2017
“I’ve always helped people and now I have the chance to help people again.”
Margaret Edy knows what it means to do good deeds for others. From working in nursery schools for over 35 years, to voluntary work at a Sue Ryder care home supporting people injured in the Second World War, many of whom had returned from concentration camps - even inviting them to her home in the process - and latterly caring for her husband Peter as he battled dementia, helping others to live has been a significant part of Margaret’s life.
The 88-year-old from Doncaster, South Yorkshire, is donating her brain to dementia research when she dies. She explained: “I’ve always given other people my love. I’m doing this out of love too, and because I want to help others.”
Margaret is one of thousands across the country who have pledged to donate their brains to the Brains for Dementia Research project, which is designed to collect brain tissue from dead donors to aid research into dementia.
The study was set up in 2007 and uses dedicated ‘brain banks’ for storage. Human brain tissue is not covered by standard organ donation schemes, so the study allows it to be collected and distributed to researchers in the most efficient way.
While that study is comparatively new, Margaret’s understanding of the need for medical research goes back to her experiences in childhood.
She said: “When I was five, I got three illnesses in the space of a year. They were diphtheria, scarlet fever and pneumonia.
“Children were dying, but I made it. Now, children don’t usually die of these illnesses, because we have vaccinations and ways of treating things. That’s thanks to research.”
Margaret met her husband Peter, who had worked in India, whilst volunteering at a Sue Ryder home. Peter was employed there working on plans on a building extension to the home. The pair married after a whirlwind courtship lasting six weeks.
“He was a wonderful man,” Margaret said. “He loved to laugh and was great with children.
“He took me back to India on a holiday. I watched the Maharajah play polo, and I danced with him too!”
The pair had a happy married life but, in the late 1990s, Margaret began to notice her husband behaving strangely.
She explained: “He once drove round a roundabout three times asking the way to Doncaster, and at home he bought four new water butts, filling them himself with a hose pipe, causing them to flood in November when they were filling themselves!”
Margaret knew she would struggle to get her husband to a GP, so came up with an ingenious solution.
“I pretended to have a sore throat, so the appointment was for me, but while I was there I got the doctor to check some facts with Peter. The doctor fibbed and said it was Peter’s birthday. My husband didn’t know it wasn’t.”
He was referred to a specialist in 1999 and after a scan, vascular dementia was diagnosed.
Margaret did what she could to learn about the condition. She said: “I was given a lot of literature about dementia to read, and Peter had to cope with the condition as best he could, as there was no medication open to him at that time.”
Initially, he was okay. Margaret brought home simple jigsaws and painting set for Peter to keep busy, which kept him happy. However, once he started deteriorating, “things went downhill quickly,” said Margaret. “He would forget who I was and would get agitated on train journeys.
“He loved to laugh, but now he would laugh even when he was in pain. I looked after him. Some of his friends who also had dementia joined us at our home for Christmas dinner.”
Peter died in 2009. Since his death, Margaret has thrown herself into spreading the research message, leafleting for Join Dementia Research in local GP surgeries, libraries and leisure centres, and she has also recently agreed to become a Patient Research Ambassador – someone who promotes health research from a patient point of view. She has starred in a video at Rotherham Doncaster and South Humber NHS Foundation Trust’s (RDaSH) research conference.
Helen Oldknow, senior research nurse at RDaSH, which is administering the Brains for Dementia Research study in South Yorkshire, said: “Having Mrs Edy is like employing 10 people - she is so busy promoting research. She’s very enthusiastic, a great role model and an inspiration to us all.”
Margaret added: “You can have all the money in the world, but if you don’t have your health, what good is that? By doing this, I can still help people, even after I’ve gone.”
If you are interested in learning about dementia research projects in your local area, go to Join Dementia Research. If you would like to learn more about promoting research for RDaSH, contact the research team there at Groundedresearch@nhs.uk or Chris Prewett, the Patient and Public Engagement Lead, at firstname.lastname@example.org
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