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James Sutliff was a 23-year-old rugby player when he unexpectedly developed Dystonia, a rare neurological disorder that causes him to slur his speech and limits the use of his hands. Now, he works as a personal trainer, and provides coaching for people with other conditions with The Matt Hampson Foundation. Here, he shares his story with Men's Health ahead of his appearance on Stronger, a series on Snapchat Discover.
Before being diagnosed with Dystonia, a movement disorder that causes your muscles to contract involuntarily with repetitive or twisting movements, I was a fit and healthy young lad. I went to the gym on a regular basis, doing the usual weight training and cardio workouts. I began taking the gym seriously when I started playing semi-professional rugby. My training became more of an addiction than a hobby.
After years of playing rugby, my health started to deteriorate. My speech was the first thing to be affected. I slurred and had great difficulty with eating and drinking. It was three days after the onset of my symptoms before I decided to go hospital. As a typical young lad, I thought whatever was wrong with me would go away in a few days.
I was put under the care of the specialist neurological team in Leicester, England, where I had numerous tests that all came back as clear. The doctors were baffled. Initially they thought that I may have had a stroke, but there were no signs of this upon investigation. With that, the specialist I was under told me to just get on with my life. To hear that was very hard and I very felt disappointed, frustrated and angry. I needed answers.
So my girlfriend at the time (now my wife), wrote a letter of complaint to the people at the top, expressing concern that I had basically been told to “just get on with it”. After much determination, I was eventually transferred to the National Neurological Hospital London, where I was finally diagnosed with Dystonia in 2012. The journey from my first symptoms to diagnosis took five years. The specialists believed that the most probable cause of my Dystonia was repeated head trauma.
During that time, my health and abilities had completely changed. I was an athlete and had always been extremely fit. But around one year after experiencing my first symptoms, my hands started to deteriorate. My left thumb started to involuntarily curl inward. Simple tasks become such a challenge. With that, my personal training and exercise had to adapt. I started using lifting aids to help me (for example, hand hooks and straps). I had never used lifting aids before, so it was new to me. I found it frustrating and demoralizing on a personal note because I didn’t know what was happening to me. I felt like I was getting weaker.
It also started to impact my work. Before the onset of my Dystonia, I was working as a full-time plumber. But due to the deterioration of my hands, I was no longer able to do this work. I had to shift my focus. I decided to get retrained as a disability coach. I completed a YMCA Fit Level 3 Exercise and Disability Course. I trained with Aspire Instruct Ability. They are an amazing organization, that support individuals with disabilities, to hopefully secure employment in the fitness and leisure sectors. And I now work alongside The Matt Hampson Foundation.
Embarking on this course is simply the best thing I have done. I am so passionate about the work I do and the people I get to support are incredible. They inspire me to keep pushing on and raising as much awareness as possible.
Since being diagnosed with Dystonia, my whole perspective on disabilities completely changed. What I went through with my disability and adapting my own training to my needs, I understand what it takes. I have complete empathy for all of my clients. Our disabilities may be different, but we all go through the same emotional battles. I would say they do appreciate me more as a trainer because I have direct experience, I can relate to what they are going through. I believe this is why we have such a great bond.
Fitness is still incredibly important to me, and I continue to make new training goals for myself. I started practicing Kung Fu, and my main fitness goal is to carry on doing Kung Fu and get as many belts as possible. Apart from that, I just want to keep in the best shape I can, as it helps with be able to manage my disability, both physically and mentally. My biggest motivations are my disability clients. To see them training in the gym is truly inspiring, their strength and determination is something to be admired.
My journey has been a struggle, and there have been many times when I have wanted to give up. But I didn’t want my disability to take control my of life and stop me from reaching my goals. Having a disability has made my whole mindset change for the better. I am generally more compassionate and selfless. It has changed my whole outlook on life and I can honestly say I don’t resent my disability—it has made me who I am today, and I am very proud of that man.
I want people to realize that if you ever go through any adversity, don’t let it control your life. You can still reach for your goals and dreams. It may sound a little cliché, but anything is truly possible if you put your mind to it. Life will have many twists and turns, but it’s how we ride the proverbial wave that gets us through. No matter what is thrown our way, we always have a choice to stand up and fight. It’s also important to highlight that you should never judge a book by its cover. You can find out more about my journey in episode 7 of ‘Stronger’ , a new series available exclusively on Snapchat Discover.
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