Hello, my name is Michael, and I’m 60 years old. My GSD story starts when I was a little boy. My hands and legs would often ache, and I always found physical activity very difficult and painful. After only a couple of minutes’ physical exertion I would get cramps in my legs and abdomen and would be unable to walk for several minutes afterwards.
When I was 7 years old I was put in a running race at school, but I collapsed after a short distance, and was taken to hospital, but the doctors didn’t quite know what was wrong with me.
McArdle’s suggested but Tarui’s diagnosed
When I was about 20 I had a biopsy taken from the muscle near the top of my leg. It was then that it was suggested I might have McArdle disease (GSD5); but in 2016 my condition was definitively diagnosed as Tarui disease (GSD7).
Living with Tarui has been a challenge because when one looks healthy, other people expect one to act accordingly. However, Tarui severely limits physical activity. So, simple things such as going for a brisk walk, climbing stairs, or dancing are daunting.
When I was younger I would feel embarrassed at having to tell friends about my condition, so I would make excuses; for example I would always arrange to meet people at a destination rather than walk to it with them, or if I was walking with people but had to stop for a rest, I would make an excuse to look at something in a shop window.
I’ve found what works for me
Having Tarui means managing it, and these are a few things that work for me:
- I avoid being tired. I get as much rest as I need, as it helps with my mobility during the day.
- I am not embarrassed to tell people that I need to take a rest when I am walking.
- I avoid carbohydrates (especially bread and cakes), but eat lots of protein (especially meat and eggs).
- I take great care in a swimming pool (or in the sea) and never go out of my depth.
- I try to lose weight; my leg muscles are very grateful!
- I go for a walk as often as I can. But always stop as soon as I feel discomfort, and never exert myself to the point when I feel cramp or nausea coming on.
I also find that I’m most mobile if I haven’t eaten at all. So, I sometimes only eat one meal a day, in the evening (this is a bit extreme, I know!)
Joining a trial in Copenhagen
I’m due to go on a drug trial in Copenhagen in a couple of weeks. So, with dollop of luck, some helpful medication may become available in the future.
