Twenty-nine-year-old Scott McIntyre has Becker muscular dystrophy. He lives in Perth, Scotland, with his wife Louise, and two step-daughters, Chloe and Nicole. Scott is an administrative volunteer with Muscular Dystrophy UK, and a Sunday school teacher. He talks about family life, and what needs to be done to support people with muscle-wasting conditions:
It was my PE teacher who first noticed that something was wrong with my mobility. I wasn’t able to apply myself properly in classes, and he suggested that I went to see a doctor.
At this time, my brother Paul, was already being tested for Becker muscular dystrophy. In August 1999, we were both diagnosed with the condition. I was 13 years old and my brother was 10.
My brother is now 26. We support each other, offering help and advice, and a friendly ear when we are finding things tough. My friend Steven , who also has a muscle-wasting condition, is a great support to me.
In 2012, I met my wife – she is everything to me, and finding her has been my biggest achievement. I am also immensely proud of my two step-daughters, Chloe, 13, and Nicole, 10. They understand my condition and how it limits what I am able to do, and they do all they can to help.
As a family we love watching movies together. I am a massive Rangers football fan, and love catching matches when I can. I really enjoy volunteering with Muscular Dystrophy UK. I help with typing up letters, and other general admin tasks. I am a Sunday school teacher at my local church, helping young people learn is something I love doing.
Moving from paediatric to adult doctors was something I found very scary. I think there needs to be a better transition stage for 16-25 year olds. Sometimes I feel written off, going from check-ups every six months, to yearly appointments. When I was younger I felt more resilient, but as I’ve got older, I have become more aware of how this condition is progressing and slowly changing my life.
I regularly attend Muscular Dystrophy UK’s support groups. It is really helpful to speak to people in similar situations, and get an insight into how other people manage their conditions. I would definitely encourage other people with muscle-wasting conditions to get involved – it’s a great way to meet new friends too.”
Get in touch with other people in your area living with Becker muscular dystrophy – contact Muscular Dystrophy UK’s care and support team, or visit the Support Hub.