Select Page

Personal Stories

I was born in Stockport in 1944. My early life was good and I had nothing wrong with my health. The area I lived in was mainly flat so I could run with the other kids and learnt to ride a bike without any problems. At the age of 7 we moved to Wales to a house high in the hills, that’s when I noticed things were different. I just couldn’t walk up those hills like others did and my parents thought I was lazy or weak. My father took me to the doctor who said I was overtired and in need of rest, and that was it! Life became difficult from then on. I couldn’t understand why I tired so much quicker than kids who looked puny and weak compared to me. I believed I was cursed with something, even my little sisters could walk up the hills better than me. I couldn’t confide my feelings with anyone and so it became my secret.

Discovering “second wind”

At age 12 we moved to a house down the valley and that helped a lot. I was at grammar school and sport was a huge problem. That’s when I discovered “Second Wind”. I didn’t know what it was then of course, I just played awfully in the first half but suddenly came to life in the second half. I learnt to avoid many things that would physically show me up to my friends and family. Learning to drive and getting a car at 19 was a godsend. So I continued through life carrying a big secret that only my wife knew.

I finally confided in my doctor

At age 50 I made a New Year’s resolution to confide in my doctor and to my surprise he took me seriously and sent me to University Hospital in Cardiff. After three days of tests, many doctors and a muscle biopsy I got a diagnosis of McArdle’s. I am not ashamed to say that I became emotional and nearly cried to think there was something wrong with me all those years. It was explained that the disease was not known until 1951 so that’s why doctors were of no help when I was a child. Years later I looked up McArdle’s on the internet and that’s how I discovered the AGSD-UK which has been wonderful. I now fully understand my condition and I have finally met others who I can relate to.

John, right, with McArdle’s group on the summit of Hay Bluff.

Bad memories but now coping well

I will always be affected by the bad memories of growing up with my secret. My parents never knew of my diagnosis, nor my workmates or friends, and even today only a few close relatives know. These days I am happy knowing that through the AGSD-UK help is available for people with McArdle’s and related conditions, and early diagnosis (even in childhood) means that people can have a better life.

Now walking regularly

I now walk regularly and know how to control my condition thanks to AGSD-UK, and a special thanks to Andrew Wakelin who has helped me, and many others with McArdle’s, so much. I am 74 years old now and living with McArdle’s is no longer a problem, or a secret!