Why I signed up to be a brain donor

Four minute read

Poppy’s content editor Sarah explains why she has pledged to be a future brain donor with Parkinson’s UK Brain Bank.

Until my dad was diagnosed with Parkinson’s, I was only vaguely aware of the condition. Before then, if you’d questioned me, I might have muttered something about the disease making your hands shake or mentioned 'Back to the Future' star Michael J Fox.

What is Parkinson’s Disease?

Before then, I didn’t know about the range of symptoms. The most common are slowness of movement and stiffness. But you can also experience nerve pain, unstable balance, anxiety, insomnia, dementia and even the loss of your sense of smell. That’s not even the whole list! The charity Parkinson’s UK has identified 40 different possible symptoms.

Not everyone with Parkinson’s experiences all of these symptoms, or experiences them in the same way. But, nevertheless, the full list makes for pretty depressing reading.

How many people in the UK have Parkinson’s Disease?

Before then, I didn’t know how many people in the UK had Parkinson’s. Actually, it’s around 145,000 people, with someone new being told they have Parkinson’s every two hours. Parkinson’s is the fastest growing neurodegenerative condition in the world.

Back then, I didn’t know what was being done to tackle Parkinson’s. What research was happening into its causes? What new treatments were being developed?

But I did know that things were changing at home.

How Parkinson’s affected my family

There are three things you need to understand about my dad.

First, he was a strider, not a dawdler. He was always several steps ahead of the rest of us on any family walk, whether through the Peak District hills or down the road to the local shop. But when he started slowing down, and was sometimes unable even to get started, we just put it down to getting older.

Secondly, he was fiercely intelligent. He loved languages — the history of the English language; the French he spoke fluently and taught to university students for most of his life; the Italian he learnt for fun in retirement. When he started struggling for words, we worried, but tried not to think about it too much.

And finally, he was a hypochondriac. There was always something wrong with him, some ache or pain. He usually saw a glass half empty, rather than half full, especially when it came to his health. So, it took longer than it should have done to work out that, this time, something was really wrong.

Older man and daughter sitting at table

How can medical research help tackle Parkinson’s?

Before he died, my dad volunteered to take part in research studies, trying new drugs and being inspected by medical students. It was good to know that something positive could come out of such a difficult experience.

But I had no idea, until I started working at Poppy’s, that I could also play a part in finding treatments or a cure for this disease.

At Poppy’s, I learnt about clients who had pledged to donate their brains to medical research. And I saw the Poppy’s team swing into rapid action when the time came, liaising with families and with the Brain Bank to make sure the donation was handled smoothly.

So, I got in touch with the Parkinson’s UK Brain Bank and signed up to be a brain donor. It made perfect sense. I’ve been on the organ donor and bone marrow registers for decades, and have received donated blood as well as given it myself.

How to sign up to be a brain donor

The process was simple. I had to fill in a few questionnaires about my health — shorter versions because I don’t have Parkinson’s myself. Then I had to talk to my family, and let my GP know, so they will be clear about my wishes when I die.

Brain donation can only happen if the person has registered in advance. It’s not a decision that your family can make for you.

It’s also essential that your family know who to call when the time comes, as the brain must be donated within 48 hours.

I hope it is a long time before anyone has to call the emergency number on my smart blue and white brain donor card. But I’m glad to know that, when I don’t need my brain any more, I can still help families like mine facing a Parkinson’s diagnosis, to look to the future with hope.

Find out how to register as a brain donor.

Read our FAQs about all kinds of organ donation and discover why Gemma decided to donate her husband’s organs after his death.

Living with Parkinson’s? Find support if you have the condition, or a friend or relative does.

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