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
Country
UK
GSD
McArdle’s (GSD5)
Diagnosed
Age 27
Written
Age 57
Date
01/2020
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!
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.
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.
Celebrating a 190 mile ride to London, at Trafalgar Square.
Myanmar trekking buddies from Australia and the Netherlands.
750 meters above the lake – dual paragliding at Pokhara!
Celebrating a 190 mile ride to London, at Trafalgar Square.
Scroll through some photos of my various adventures. Click to enlarge.
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!
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.
Issues with altitude
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!
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.
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.
I HOPE MY ACCOUNT GIVES ENCOURAGEMENT
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.