SPORTS, FITNESS & DANCE

How My Dystonia First Came About

Rare Disease & Syndrome

James Sutliff

About Me ♿️💪👦🏻

Hello, my name is James Sutliff. On the May Bank Holiday of 2008 my life took a sudden, unexpected change. After a normal night out with friends, I returned home, went to bed as I usually would and slept well. I woke up as I normally would and then I started to feel a little unwell. I put this down as a hangover. I took a small nap, to wake up to something that changed my life in an instant. I found that my speech was badly distorted and slurred; thinking this would pass I carried on as I normally would do. A couple of days later the problem seemed to worsen, so a friend took me to the hospital, where I was admitted straight away. I underwent test after test, to the doctor’s confusion. On paper I was a healthy 24 year old man. Doctors were baffled by what had happened to me and could not finger point a cause or diagnosis.

Still, almost 9 years on I have no clear cause why this has happened. I was put under the care of a neurological specialist, whom I saw every 6 months, just to be prodded and poked at. A year had passed and although I still had my speech problem, I was carrying on my life as I normally would do….then the problem directed itself into my hands. I noticed that my thumb on my left hand was starting to become painful and tight and I found it increasingly hard to use, to the point where it eventually closed fully.

Over time a couple of my fingers on both my left and right hands did the same. Working as a plumber by trade I found it increasingly hard to continue doing my job, I no longer plumbed as a living. Although I found it very hard going from a drastic wage decrease, I found work as labourer. I work with a great team of lads and they help encourage and build my confidence each day.

In the year of 2012, I was diagnosed with Dystonia. Finally I had name to this thing that had been ruling my life for so long. I started to read up on Dystonia – it is a debilitating disease that can affect your life completely, no matter how minor the symptoms. My Dystonia is treated with Botulinum toxin injections and regular hand therapy. The combination helps to relieve some of my symptoms such as pain, stiffness/spasms and range of movement. I am able to grip gym equipment more freely, with a better range of movement; the toxin also helps to relieve pain during training. Always being keen on the gym, I had always been in pretty good shape but I wanted to prove that my goals and dreams were still achievable, although having a disability. For the past four years I have dedicated myself to the gym. I am working hard to try and raise awareness for Dystonia and also to help encourage anyone out there who may have disabilities, confidence or self esteem issues or anyone who generally wants to keep in shape.

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