Lay Member of Court, Edinburgh Napier University, and Person with Parkinson’s (PwP).
Parkinson’s Disease devastates lives- and right now, it affects around 10 million people worldwide. Despite a tremendous research effort, there are no known cures. But there is hope!
We recently spoke with Stephen Brannan, Chairman of Edinburgh’s branch of Parkinson’s UK and someone who’s been living with Parkinson’s Disease for the past ten years, about how it changed his life and what still gives him hope.
In my career, I enjoyed 13 years as a Senior Partner of PA Consulting and 12 years as Director of the Royal Bank of Scotland before retiring early.
I’ve always enjoyed playing a lot of sport and I’ve been a badminton coach. More recently I’ve played golf and tennis. In 2013, I noticed there was something wrong with my left foot.
Perhaps a pulled muscle? I went to the physiotherapist who said there was nothing muscularly wrong and told me to go see my GP. My GP said I needed to see a neurologist. A neurologist? What would a neurologist know about a pulled muscle?
So I went to see the neurologist and after a couple of questions and a short walk down the corridor, he said I had Parkinson’s disease.
You could have absolutely knocked me over with a feather.
It came as a complete shock. I didn’t know really what Parkinson’s was, but it didn’t sound good.
How did this news affect my life?
Initially I tried to ignore it. However, I soon realized I needed to start taking medication to help manage the symptoms. I’ve been very lucky in that my progression through Parkinson’s over the last ten years has been moderately slow.
But there must be more I could do and I joined the Research Interest Group of the Edinburgh Branch of Parkinson’s UK. I am now taking part in a clinical trial. I’m on a double-blind trial that’s repurposing a diabetes drug called exenatide. The trial is being run out of University College London (UCL) with a local group based at the Western General Hospital in Edinburgh.
I inject myself every Thursday, but I have no idea whether I am on the placebo or on the drug. I like to take a positive view of life – glass half full. At the start of the trial, my symptoms seemed to slow down, but with nine months to go, my balance is going a bit, and I’m fatigued in the evenings. However, if my participation helps to find a cure or a way to slow down the progression of symptoms, then it’s been worthwhile.
More generally, the situation is very frustrating. Parkinson’s, a neurological degenerative disease, has been in the medical books since 1817. Like other neurodegenerative diseases such as Alzheimer’s Disease, there is still no cure.
Around the world, there are more than 10 million people with Parkinson’s Disease. Alzheimer’s Disease affects 24 million people worldwide, and dementia as a whole, over 55 million. But there are no effective treatments. We still don’t understand why these diseases happen or, often, how to effectively diagnose them.
So where do I find hope?
Science and ingenuity give me hope. Having scientific tools available to the University researcher or the largest drug companies to mimic diseases in a dish gives me hope.
Using human cells for drug testing gives me hope. Apart from the controversy over using animals to test drugs for humans, surely it is better to use human rather then animal cells to test the impact of new drugs? If you can do this at scale, representing real life diversity such as sex, ethnic background, age… this must be better.
Axol is a company which gives me hope. It can take cell samples from people and convert them to specialist cell types, e.g. neurons. It can manufacture these specialist cells at volume and to a consistent quality. These specialist cells lines can then be used to trial new drugs and treatments in a dish – this gives me hope!
I have a simple request for you all: HURRY UP!
As Stephen mentioned, there is hope. There’s progress being made. As science moves on so do our techniques and understanding. And with better models in the form of human induced pluripotent stem cells, we’re getting closer to treating diseases like Parkinson’s.