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Personal Stories

For as long as I can remember I have lived with muscle pain/weakness that has sporadically led to a feeling of humiliation and inadequacy. My parents often told me how, even at an early age, I hated walking and after a short distance would complain my legs ached. Hills were simply a no go area. Several times I was told I was simply lazy or unfit and, despite three instances of rhabdomyolysis, I was not diagnosed until the age of 43.

Andy uses ketosis to help him play cricket.

What happened there?

Cricket is my favourite sport and I was able to represent both my school and university, and played to a reasonable standard. A reflex catch at short leg takes little exertion. Running between the wickets can, with skill, be controlled by appropriate calling, except of course in very tight situations. In one such, as an eleven year old, I recall attempting a third run and coming to a grinding, inexplicable halt mid pitch. Dismissed, run out, I walked back to the pavilion in tears unable to explain what had happened or why.

Diagnosed at 41 in Singapore

Only 30 years on, when diagnosed in Singapore, through a series of coincidences and a very alert cardiologist, did I finally have the answer. I credit cricket with helping me to cope with the disease and to remain reasonably active, but it has seen me hospitalised twice with rhabdo. The days that followed games would also see me wander around with a degree of stiffness most people would associate with far more demanding exercise.

With diagnosis came relief and also the opportunity to learn how to cope and indeed improve fitness. Since visiting Dr Slonim, in New York, in 2005 I have tried to fit regular exercise into a hectic business travel schedule. Having kept a record of treadmill sessions I was able to show considerable improvement.

Walk over Wales

I joined Walk Over Wales in 2010 and found it a tremendous experience in meeting others with McArdle’s, and in feeling an enormous sense of achievement. All the while in great company, enjoying the challenge and the beauty of Wales and its mountains.

Discovering ketosis by accident

Four years later, while on a 10 day water fast I noticed that, after 5 or 6 days I was able to exercise at a level I had previously found impossible. It was first apparent when I marched up a long, quite steep incline without feeling any need to pause, and then was able to swim over 2 km, in a 25m pool, again without pause and without pain. I called Andrew Wakelin who suggested I must be in ketosis. I experimented further and was soon jogging for 40 minutes, something I had only dreamed of previously. A campaign followed on Facebook to encourage others to experiment with a Ketogenic diet, and, after some initial resistance, I am delighted that many people have since tried it for themselves and felt the freedom that being permanently in ketosis can bring. For me it meant cricket was pain free. I still fast before each game to give myself the best possible chance of success.

I am convinced that being in ketosis has huge benefits for those of us with McArdle’s and that experimentation with diet offers a way forward for many. If you have not yet tried it please consider it, it may change your life for the better.

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Approaching 57 I have just completed another cricket season and, while runs did not flow, some decent catches were taken behind the stumps, without keto that could, probably, simply not have happened.

For more please read my blog.