Humans have a basic need for food, water, air, and shelter to survive. I live with the muscle wasting disease called Duchenne muscular dystrophy. This disease eventually takes away the ability to eat, drink and breathe independently. I’m going to add walking to that list because it is essential to getting around.
What I have lost and gained living with Duchenne muscular dystrophy
Eating/Drinking
I was able to feed myself for most of my life, right up until about my twenties. I gradually started losing strength in my arms to even lift the knife and fork which was very frustrating. When your body starts working against you that is when DMD does the damage to your mental health. From not eating enough I got very thin, it was so serious they were talking about me being peg fed. So I pushed myself to eat better and be fed by my parents, which felt awful. Eating was good but being fed took me a long while to accept. Having a body with the strength of a young baby and having to dependent on others. Having the mind of an adult in this situation is heartbreaking!
“These are the negatives, but I’ve gained the ability to trust others.”
I recently purchased a bottle I can attach to my wheelchair with a long tube I can drink from. I have plenty of help and for that I am grateful.
Breathing
The only times I had noticed ever struggling to breathe when I was younger, it was a warm night in Florida or on a bus in Cyprus which was probably the humidity. My breathing has always been monitored over the years because of the condition. Over time the hospital noticed a bit of decline in my breathing stats. They recommended I use a CPAP machine in the afternoon to help me. This machine had to be moved to wherever I was, be it my bedroom or the living room which was quite inconvenient. I didn’t take to that. I can’t use the CPAP outside so we found an alternative the doctor recommended which is called Mouthpiece ventilation. At this moment in time, I wear a CPAP mask when I go to sleep.
I also use a cough assist machine every day to make sure my airways are clear. This helps me stay clear of chest infections which usually lead to a stay in hospital. Finally, back to the Mouthpiece ventilation, this machine helps me get some air to open my lungs more fully to breathe. It’s so convenient because it is attached to my wheelchair so I can take it wherever I go throughout my day. It is a long tube with a straw at the end.
“This means I can talk better and don’t need a mask on my face all day. Having a portable breathing machine has meant I have gained freedom.”
Walking
What I remember from an early age is walking on my toes, not my tip toes because that would be impossible. This meant my balance wasn’t great and I would fall quite a lot. I also realised that I wasn’t like all the other kids at school. There would be teasing but I wasn’t bullied because I had good a friendship group around me.
Me and my parents were told about an operation to fix the toe walking. The surgeon cut my Achilles tendons to lengthen them so I could walk flat. I had to wear splints day and night after this surgery. Walking normally gave me a boost of confidence. A couple of years later I started to notice my legs and back were getting quite sore. I started to fall more frequently and needed to sit down to get relief from leg pain. There was one thing I refused and it was leg exercises. My Dad would stretch my legs to keep them from getting stiff. This is something a physio would recommend to people with this muscle condition. I regret refusing these exercises because my legs don’t straighten out fully which I only have myself to blame for.
In secondary school I was having to use a wheelchair to get around school but eventually it was permanent when I lost my ability to walk at 13 or 14. I hated every second in that wheelchair. Eventually after I left secondary school I had a different mindset about using a wheelchair.
“With my powered wheelchair I have gained independence to get around without pain or the chance of falling. I can move a lot faster than I did when I could walk.”
Sadly, some people will always treat me differently because I use a wheelchair. Thankfully I’m secure in myself and enjoy life, so I don’t let other people’s opinions affect me.
Thanks for reading
Aaron
