PERSONAL STORY OF MUSCLE GSD
MY ADVENTURES IN 2019
My name is Gary McLellan, I have McArdle’s and I would like to tell you about my adventures in 2019. I am 57 years old, was diagnosed 30 years ago by muscle biopsy and more recently DNA confirmed. Like so many of us I am homozygous for the R50X mutation in the PYGM gene, meaning I have zero myophosphorylase.
Name: Gary McLellan
GSD: McArdle’s (GSD5)
Diagnosed at age: 27
Age at writing: 57
I am very aware that this account of my year could seem a little boastful, and that some people with McArdle’s cannot manage as well as I do, for all sorts of reasons. However, I hope my account will give encouragement and show what can be possible for some people with this condition.
My work enables me to keep very fit
I work as a self employed builder and live in Bollington, a small (hilly) mill town on the edge of the Peak District. Having a manual job, where I work very hard: roofing, joinery, etc., seems to guard me against the worst effects of McArdle’s – but I’m not a doctor, so that’s a guess!
I’m not immune to the effects of McArdle’s, most days at work I have to take care to get myself into second wind, as I do when climbing or cycling. I generally find that the more active I am, and the less I weigh, the less the symptoms are. 18 months ago I weighed 93kg. I made a conscious effort to lose weight and am now 78kg. I found losing weight made a massive difference.
My adventures in 2019
Early in 2019 I had my routine McArdle’s appointment with Dr Quinlivan at the McArdle Clinic in London. UCLH is 190 miles from my house, so I got on my pushbike and rode there, in two days!
Celebrating a 190 mile ride to London, at Trafalgar Square.
Then I had a three week backpacking trip to Myanmar in May, the hot season, with my wife Irene. Whilst we were in Hsipaw, a town in Shan state, l went trekking into the jungle with a guide and two others, the first day we walked about 10 miles and climbed about 1000m, in 42ºC. The second day was a crazy affair on motorbikes.
Myanmar trekking buddies from Australia and the Netherlands.
My next adventure was a trekking trip in June across Iceland. I went with another friend, Meike from Brussels. In total we were there for 16 days. For 9 of the days we backpacked across the glaciers and highlands carrying all our gear and food (20kgs each). During the whole holiday we walked about 150 miles.
Fully loaded backpackers in Iceland.
That leaves my main adventure. I decided to go to Nepal for a month from mid November to mid December. I flew to Kathmandu and two days later flew into Lukla, apparently the world’s most dangerous airport, only one fatality this year!
Lukla airport, that’s a sheer drop at the end of the runway!
I planned to hike the Everest base camp “three passes” trek, solo, unguided and carrying my own gear (13kgs). Obviously my insurance didn’t cover rescue due to my McArdle’s, so l had to be very careful not to get rhabdomyolysis! I need not have worried, I was quicker than 90% of the other trekkers! Very strange! I was even quicker than younger people who had porters.
Everest behind me. I’m at 5,500m, where oxygen is about 50%.
I hiked for 18 days, climbed about 12,000 vertical meters, but I had very little sleep for 14 of the days, as I had problems sleeping due to the altitude. Other “normal” people were rescued from around me, but l was fine until the last pass (over 5,000m for the 6th time). l took an hour longer than the guidebook time, due to being completely knackered from lack of sleep.
Interestingly, after the first day’s trekking l never once felt the usual limitation before getting into second wind!
Namche Bazzar, the Sherpa capital.
Amazingly, at 5,000m I had my blood oxygen checked, it was 90% saturation with a resting heart rate of 80 bpm. The other trekkers I met were at 65% to 80% with heart rates around 100. The sherpas were 90%! So it seems to me that one’s ability to cope with altitude may be pure luck – age, fitness and McArdle’s seem to make little difference.
750 meters above the lake – dual paragliding at Pokhara!
I spent the last week of my month traveling to Pokhara and back in a bus (like in the “Top Gear” Christmas special!). Whilst there I went cycling in the hills, hiking in the forest and dual paragliding over the lake.
Best wishes, Gary.