An astute physician at the Radcliffe Infirmary, David Hilton-Jones, diagnosed my Pompe’s disease in 1999. This was 11 years after the initial diagnosis (elsewhere) of muscular dystrophy, when I was 46.
In August 2016, I had a serious fall at home fracturing my pelvis on both sides, followed by 10 weeks in hospital and have been a wheelchair and scooter user ever since. As you can see from the photograph, my grandchildren think it’s great fun!
A big confidence boost
I had recently published a book having completed three years of intensive research to determine the fate of my uncle who was the only Royal Marine to be unaccounted for at the Armistice of the Korean War (1953). Accolades received from UK and US military authorities, and the granting of the Elizabeth Cross award by the Queen last year proved a real boost to my confidence. As a result I have re-taken my driving test, and passed. I have a modified vehicle, though I need a passenger, my wife Jill mostly, to be with me to load/offload me and equipment.
Still watching Coventry City FC
I am very blessed by support given, including that of care workers three days a week. I still go occasionally to watch Coventry City Football Club, with our son, and this summer Jill and I went to a jazz festival, having found a hotel chain with good accessible facilities.
I recommend distraction therapy
Over the last two years I have put much effort into campaigning for the improvement of primary care services in the large GP practice where I live, but as a consequence I ended up very stressed. Obviously, I have taken distraction therapy a little too far, but still believe it is a very good medicine for Pompe’s. I am reverting to desk-bound family history research as a gentler way forward.
I am a member of both AGSD-UK and Muscular Dystrophy UK. I continue with Enzyme Replacement Therapy.