Diagnosis and Fear:
My Dream, prior to Muscular Dystrophy, was to be successful, both in business and family: to explore the world around us and enjoy time with nature as much as possible.
This dream changed a little over time, and when I was first diagnosed (at age 18), my dream was to beat the disease, remain walking, get strength back in my muscles and do the things that my friends were doing. I pursued this dream relentlessly until I stopped walking. I read all the research available on my condition, contacted universities and research centres, travelled and met the top clinicians for type 2A LGMD. I trialled supplements and muscle stimulants, I even explored foreign stem-cell treatment (although didn’t go ahead with it).
This led me to being one of 13 people – with the strain I have – participating on an official drug trial (in 2006) of a myostatin-inhibiting drug. I was offered a job working at UCLA, in the research department for a professor studying my condition; my job would be as a research assistant, running the department website. However, mobility issues held me back from pursuing this, despite my earlier dream of exploring the world. I gave in to fear.
I have also been a realist, knowing that, one day, a wheelchair would be needed. I sought out employment in jobs that would give me transferrable skills – once in a wheelchair – working in many call centres throughout my time at university.
Freedom and Acceptance:
When a wheelchair was finally needed, it turned out to be a great relief for me. I had spent many years frightened to go outside, frightened to walk, for fear of a fall. Once I had the wheelchair, I could once again set my sights on my original dreams.
I graduated from university with a PhD, took over the family business (which my grandfather started), developed my own small rental business, and now enjoy a comfortable lifestyle taking my son on adventures around the UK, and further afield. I have an ‘All Terrain’ wheelchair, which allows me to spend as much time as possible outside with nature; its taken me through fields, forests, across beaches and over mountainous terrain. I now work part time, so that I can spend time each week taking my son to school and being around to cook with him (with the help of carers). The wheelchair has allowed me to be more adventurous, taking my son on buses, trains and the underground in London (with careful planning).
It is scary when you are first diagnosed, and it’s hard to have a plan for the future when your health keeps changing. But it is possible to not let the disease beat you, to pursue your dreams and be successful. One of the most important things that kept me going over the years was my positivity. I feel this has been a major contributor to why I don’t suffer from fatigue or pain. Since stopping walking, my fear has gone and been replaced by a sense of adventure.
Ask others with similar conditions
Andrew: It’s not easy but you can find ways to make it easier. Things that have made it less complicated for me is having a positive mental attitude, talking to others with the condition, finding out best practices, things that they did differently, thinking ‘ooh perhaps I’ll try that’. You can reach out to the online community, get as much support as you can do and go out there and live life.