Doug's story

Elsie using her tablet
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Starting Over:
My dream as a child was to escape my traumatic upbringing, which l did when l was 15 years old. So l ran away to London from my home in Bolton, Lancashire, and didn’t go back for a very long time. Looking back l realise l was trying to “save myself”.

Both my mother and one of my sisters had/has schizophrenia, and my other sister had Down’s syndrome. My home had become intolerable to me. I still think of my family home with trepidation… Sad but true…it still exists in my memory as “the house of horror” – never forgotten.

I had numerous escapades after my arrival in London, l won’t go into these now. Later in life, l became obsessed with social dancing and spent much of my leisure time dancing – swing, jive, salsa etc. I loved to dance and it soon became my raison d’etre.

I thought I had escaped the genetic whirlpool that is my family, but then, in 2012, I was dealt a major blow. I was diagnosed with “probable” CMT type 2 – or Charcot-Marie-Tooth – at the National Hospital for Neurology and Neurosurgery (NHNN). I would become disabled. How would l cope without dancing?

I thought life wouldn’t be worth living. How wrong l was.

Raising Awareness:
I became a social worker later in life; in Buddhist terms, l was “taking on the appropriate karma”. Eventually, the job became untenable due to both financial cuts/austerity and the progression of my disability, forcing me to retire.

After retirement (at 66), the transition to becoming disabled led me to also becoming anxious/depressed for a while. My friends and family kept asking “what’s that neuro thing you’ve got again?” – this became a refrain which really started to get on my nerves (forgive the pun). I decided to make a film about Charcot-Marie-Tooth, to explain.

Two years later, l had got the one-minute film made, and l organised the “world premiere” in The Jubilee room in parliament, with the help of my local MP.

That was the beginning of my personal quest to raise awareness of CMT. I made a calendar in 2017, with pictures of 14 people with CMT, and a positive quote from each about life with a disability. I also provide presentations to health professionals about what Charcot-Marie-Tooth is and what its effects are.

My main aim now, is to raise awareness of all the rare diseases out there “for the social media generation”. There are so many people out there with various types of muscular dystrophy.

I feel a one-minute film on each, would make such a difference. Telling the viewer, quickly and succinctly, about the disease and its main effects. Accurate diagnosis, and increased awareness generally, would make such a difference to so many people.

Patient Advice

Balance your day well

Doug: I need plenty of rest, so I have to balance my day quite well. I make sure I do something positive each day, something that motivates me to just carry on living. I adapt this to my situation, so that I can rest when I need to.

My life with a neuromuscular condition in pictures

Doug having a break on a walk
Doug out and about
Doug going to a conference to talk about CMT
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