Pathfinders Neuromuscular life

Blogs, News and Features from the Neuromuscular Community

SMA & Me – John’s Story

A man with a beard and glasses in a powered wheelchair, sat with him a dog

For Spinal Muscular Atrophy (SMA) awareness month we asked some of our members about living with their condition – John tells us about his passion for arts, acting, reading, the challenges he has faced throughout education, the positive impact of technology and more!

My name is John P Vickers, and I am 42 and I have SMA type II. I have never let my disability get in the way of enjoying life. I am an avid reader, reading anything from classics to more up-to-date novels in any genre. In my college years I studied performing arts, acting being my chosen subject, I have always had a passion for the arts, I miss being on stage. Watching a good movie and binge watching TV series is one of my main pastimes. I live independently with my own care team through direct payments. I have a dog named Kes and 2 ferrets named Wave and Maze.

Some of the challenges I faced due to having SMA and there are quite a few so I will keep it brief. The first that sticks in my mind is many years ago when I went to school “special school”, the only thing special about it was the way they grouped everybody together, learning difficulties with physical disabilities and did not teach us much at all. If it wasn’t for my mum fighting my corner to get me into mainstream education I don’t think I would have got out of there with a good education.

Another challenge was when I broke my leg at the age of 11 and had to stay in hospital in traction. The hospital certainly was not geared up for my level of care and basically drugged me up on Valium to keep me quiet. If it wasn’t for my paediatrician stepping in and basically going through the nurses like a dose of salt and telling them I was okay to go home because I would not be walking on my leg I would have to stay in there for 6 weeks rather than the 2 weeks I did.

The most recent challenge was when the Independent Living Fund closed and my 24-hour day care package was in jeopardy because social services were at their limit financially. I was asked if I would consider leaving my home to live in some sort of residential care which quite frankly scared the hell out of me. In the end, continuing healthcare put in the extra funds to allow me to stay independent where I am. To this day it is still a constant worry if things change.

The positive things in my life are constantly evolving. When I was a child growing up in the 80s I could only dream of the technology that we have today which has a massive positive impact in my day-to-day life. For example writing this, I am using dictation software because I can no longer use my hands to use a keyboard. Using my phone I also use voice control because I can no longer hold my phone and use my hands to control it. I have Amazon Alex’s all around the house which I used to control various appliances and use them as an intercom system to call for assistance if I need it.

I am finding it hard to think of my biggest achievements in life because I’m quite a modest person by nature. I think each day is an achievement and a challenge, I also believe a day without learning just one thing is a wasted day. I suppose getting to live independently is one of my biggest achievements. Managing my care team is also an achievement but it does help that I have a good team around me.

Did you enjoy John’s story? Check out Ross’ Story in the SMA & Me series! – Email adam@pathfindersalliance.org.uk if you would like to share your story!

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