Taken from Benjamin James' blog HorizonsofHope - living with a neuromuscular condition, feelings, frustrations and hope. 

"Recently I have been thinking of the physical ability I once had, wanting to go back to a time when I did not need a powered wheelchair.  Longing to go back, to stay. But time moves on, life progresses forward. Life does not stand still; we are all bound by time, with time being a precious thing. This progression of time is more noticeable when you suffer from a progressive condition such as Duchenne. This can be a struggle when not everyone has known you without the chair, a time when Duchenne felt a long way off.

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Not everyone knows that I have not always used a powered wheelchair, particularly those who I have met in last few years.

There was a time before the powered wheelchair. This is the nature of the progressive condition that Is Duchenne Muscular dystrophy. Whilst Duchenne is a massive part of my life and has shaped who I am, it does not define me. I am Benjamin who happens to have Duchenne and is doing incredibly well despite this diagnosis. The powered chair has allowed me to continue to do all the things I want, to go to university, to sail and to get out and about.

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This progression of Duchenne has inevitably impacted on my mental health, particularly in the last year. It is one factor that has largely contributed to my anxiety. However, I feel in a better place with my anxiety than I did a few months ago. There are ups and downs, but things have been a bit better lately. Turning to others and getting the support I need has definitely helped me to live life and not be bound by Duchenne. This is not easy, but I keep on keeping on despite this.

Those who have Duchenne are all impacted in different ways, we all have a different journey, but we can all agree that we wouldn’t wish this diagnosis on anyone else. Although I would argue that I would not be who I am today without Duchenne, I long for the day when we have better treatments for Duchenne and Duchenne is no more."

Benjamin graduated with a 1st class honours degree in Neuroscience at the University of Nottingham. He is currently completing his Masters in Science Communication at the University of Sheffield. Benjamin sits on our Research Sub-committee along with taking an internship with Action Duchenne during his studies.