Posted - November 2013 in Community Members
As a boy I was always the slowest mover in my class and soon learnt to dodge sport times and the taunts of my classmates. As I grew up people started noticing that my gait was unusual but they could not define the problem and I kept up with the social activities of my peers. School work was no great problem and when I left I took a plumbing apprenticeship. I had no trouble with that either, although I was never confident on roofs or narrow ledges and always took great care. I had my own business for many years and also had periods of satisfying employment, finishing at 59 when the company I was with at the time underwent changes and I took redundancy.
With hindsight I now believe that choosing a “manual, active” career path saved me from earlier impairment from HSP. The usual ailments of physical work, “bad backs”, aching legs etc, were all dismissed as “arthritis”, “spinal degeneration” or the need to have knee/hip replacements!
In 1985 I took my teenage daughter to a neurologist and as I was leaving, after he had finished seeing her, he quietly said, “Your daughter is OK but I want you to return as you have a problem.” His astute observation was rare as no other doctor I had spoken to prior to finding Prof. Nicholson (by reading a newspaper article about Charcot-Marie-Tooth disease) seemed to have heard about HSP. One GP still does not believe that I have it even after reports to him from the Professor!
During the last few years there has been a noticeable deterioration in my mobility and comfort. Incontinence is, and has been, a persistent problem and the risk from insensitive feet is a hazard as minor ailments can develop unchecked. Finding comfortable shoes, particularly now that I have orthotics, is also difficult but the orthotics have been a great help.
I have been lucky. Doctors have said they expected me to be in a wheelchair years ago. I now try to keep as active as possible, with Aquarobics (water aerobics), and tending my exhibition poultry.