“I think having dyskinesia is more disabling than having Parkinson’s itself…”

Today, Parkinson’s UK have announced a new project that could prevent one of the most debilitating side effects of Parkinson’s medication — dyskinesia. But what is it like to live with dyskinesia?

Matt Eagles has been taking medication for Parkinson’s since he was eight years old. Now in his 40s, he experiences dyskinesia daily. He said:

“It’s like I have no control over my limbs and my strings are being pulled by a puppet master. I can’t hold things still, so I can’t do simple things people take for granted like read a book, hold a phone to my ear or type on a keyboard. Even going to the loo can be difficult and sometimes very embarrassing.

“I think having dyskinesia is more disabling than having Parkinson’s itself. It’s certainly more distressing for people who witness my episodes. It’s also incredibly exhausting — to be constantly writhing around — and it can be very violent. Just last year I ripped a muscle in my shoulder because of a particularly violent jerk of my arm. It was so painful and it took a very long time to heal. It still bothers me today.

“Being able to take something that could give me back control of my body would be amazing — a game-changer. It’s been so long since I have been able to shave without cutting myself or eat something without throwing it on the floor by mistake. It would feel like I could live my life safely again like anyone else.”