A Life Worth Living: Stuart Reid27 May 2011
Jon Hastie, 30, has Duchenne muscular dystrophy, an incurable condition which means he requires 24 hour care and uses a machine to help him breathe.
On Saturday 21 May 2011 he began a journey that would take him across the UK and through Europe documenting the lives of people affected by the condition. He hopes the documentary "will be an inspiration to young men diagnosed with muscle-wasting conditions."
His documentary took him to Solihull to interview Stuart Reid. Stuart is 28 and lives in Solihull in the West Midlands. He recently self-published a World War II thriller and is currently working on a follow-up set in the cold war. He has a keen interest in history and has visited the Netherlands several times as research for his novel.
What is your name, age, and where do you live?
Stuart Reid, 28 years old, living in Solihull, West Midlands though I originate from Paisley, Scotland
When were you diagnosed with Duchenne?
I was diagnosed in November 1989, a month before my seventh birthday.
When did you first go into a wheelchair?
I began using a wheelchair full-time in summer 1994, when I was 11.
What do you do throughout the day? (For example volunteering, work, art, reading, gaming etc)
I am currently studying a Politics, Philosophy and Economics Degree through the Open University so spend time on that. I do a bit of writing and I also do graphic design work for the company called Amillan for which my father is a director and my sister is the marketing manager. I have recently started doing two afternoons a week there, as this keeps me below the permitted work level for incapacity benefit. I enjoy watching television and films, and am very much into sports, particularly football, Formula 1 and rugby.
How do you cope with the day to day issues of DMD?
I generally cope pretty well. I have a sense of humour which helps and I like to joke around. I do sometimes find it difficult watching people do things I can't do and would love to be able to play sport myself. The actual condition is rarely what bothers me; it is the way it impairs my relationships with other people. Male relationships are built on doing things together rather than talking so being unable to take part can affect this. The thing I get most upset about is not having any sort of love/sex life like other young men.
Tell us about your family/friends - who do you live with, do you have any brothers or sisters?
I live with my mum and dad and my sister Laura who will be 26 in two weeks' times. My father is a director of an IT/technology company and my sister does marketing for the same firm. My mother doesn't work. I have an elder brother Greg who lives nearby with his wife Jemma, they both work in recruitment.
What do you feel is the biggest achievement in your life so far? (e.g. going to university, living independently, writing a book, campaign work, etc)
Writing my novel was a big achievement
If you could change one thing in your life (except for having DMD), what would it be?
I would like to live somewhere with a warmer climate, probably Spain.
What assistive technology do you use? For example ventilators, environmental controls and wheelchairs etc..
I use a non-invasive ventilator during the night and whenever I lie down, plus occasionally in the day. I use a cough assist machine to clear my lungs. I have an electric wheelchair with a riser function. I have a Possum environmental control. On the computer I use an infrared head-guided mouse with onscreen keyboard, plus dictation software.
Are there any goals you still want to achieve in the future?
I would like to become an author full-time with a proper publishing deal, or get into screenwriting. I want to complete my degree. I would like to have a serious relationship at some point.
You can help Jon Hastie complete his ambitious journey by donating the cost of your daily commute at www.alifeworthlivingfilm.com. He travels to work in a specially adapted car and uses a specially adapted powered wheelchair to get around. He would 'love to be able to walk to work every day, even in pouring rain' and asks that you walk to work and donate the cost of the commute.