Living with Parkinson’s disease: Andrew’s story

My name is Andrew. I’m a Sheffield lad and have lived in Crookes all my life. Like you, I’m also an alumnus of the University, graduating in philosophy and then gaining a master’s in social work.

My two sons are both adults now, so I live with my partner, Marianne, and our dog Chester. But we also have to share our lives with my Parkinson’s.

I was diagnosed at the age of just 53, which is relatively young. I’d started to notice that my left arm wasn’t swinging properly but it was driving back from a family holiday when I realised that it was something far more serious than a trapped nerve. My left arm was like a lead weight. I could barely even lift it to change gear.

I was referred to a consultant neurologist. He asked me a lot of questions and did what seem like simple tests such as rotating my arms and watching me walk up and down the hospital corridor. There were no cutting-edge scanners to help back then, but after 20 minutes or so, he sat me down and said it was highly likely that I had Parkinson’s.

It knocked me for six. After the news, I remember just staring at the reflection of the Arts Tower in the pond in Weston Park filled with anxiety about the future.

But right from the start, I was told that Parkinson’s isn’t fatal. It’d give me a good kicking along the way but it wouldn’t kill me per se. So, I’ve just been trying to live with it for the last 11 years but life can be a real challenge.

When I have an ‘off’ day, everything goes out of the window. My body slows down and I feel so weak I can barely stand. It feels like I spend vast swathes of time just waiting for my movement to return.

The main line of attack, treatment wise, is a drug called L-Dopa. But it can have some very powerful side effects. Parkinson’s slows you down, diminishes your voice and immobilises you so L-Dopa can help with all of this. But if the dosage is off and you have too much, it can push you into dopamine overdrive. Your movements become jerky, you feel out of control and you start talking rapidly. It’s most unpleasant and embarrassing - for myself and for friends and family. And you can imagine how that makes me feel.

But I know I’m fortunate in many ways. Yes, I got Parkinson’s at just 53 and had to give up my career. It’s true I can no longer do a lot of the things I used to enjoy or hoped to do like going walking in the hills. But at least I’d managed to live a bit before I was diagnosed.

I got to go to the University, something I’d dreamed of since I was a lad. And I managed to meet so many people through my various jobs over the years, from being an ambulance man to doing social work and later as a probation officer.

These days being a part of the Parkinson’s research project means a lot. It’s so exciting to think we could reach the day when there won’t just be treatment for the symptoms like L-Dopa but therapies that are targeted to your specific type of Parkinson’s. That is astounding!

I know it will take time and money to get there. However, if there is anything I can do to bring that day closer, then I’ll do it. The research being undertaken at Sheffield could be life-changing for hundreds of thousands, if not millions of people affected by Parkinson’s.

That’s why I’m glad to be sharing my story with you. I hope it will inspire you to support Sheffield’s amazing Parkinson’s research.

Thank you

Andrew Myers
BA Philosophy 1985, MA Applied Social Studies 1991