Saturday 6 August 2011

My father has HD, HD has my father

People usually look at you with a blank expression if you mention HD, or Huntington’s Disease. Most people have never heard of it, unless they’ve had some experience of it; perhaps from having met someone with it, worked in a caring profession or have family members with it. I suppose because it is not as widespread as something like Alzheimer's or as well known as MS. It is a genetic disease that is passed down directly from parent to child, and it cannot skip a generation. My grandma had it and now my father has it. And for all I know it could be me next. In grandma’s day it was known as Huntington’s Chorea, the Chorea describing the erratic limb movements that are one of the symptoms and characteristics of this cruel and wasting disease. This BBC web page offers a concise but reasonable explanation of what the disease is all about. For a more detailed information go to The Huntington's Disease Association.

As children we watched grandma’s deterioration with both bemusement and amusement. One occasion amongst many that will stick in my mind for ever was at a family tea party when grandma picked up the left-over crusts from my cousins plate, popped them into her mouth, eating them instead of her intended target, the untouched sandwich on the plate in front. It is to my eternal shame that I admit that we laughed heartily at this incident. Kids can be really cruel.

Grandma died at a relatively early age. She was in her early sixties. She was lucky enough, if I might be permitted to describe it like that, to die of a heart attack. She was spared the horrors of physical deterioration and then dying through painful complications brought about by HD. I’m not sure my father is going to fare quite as well. At almost eighty my dad is now on a definite downward spiral. Wasting away. I won’t go into detail as I don’t feel that would be right but as a son that has not always been that close to his father it is still very disturbing to witness. I’m pretty sure that all my life I have been a disappointment to my father. I was never really that interested in sport, diy or outdoor pursuits. I’ve always been the arty and cerebral type. Puny but philosophical. I’m not sure dad has ever understood what makes me tick, a feeling that is mutual. That said I still feel for my dad. I witness his bewilderment and frustration. It is as if he’s strapped in to a mysterious and scary roller-coaster ride. He has no control over the journey and he’s not totally sure of the destination. Sadly as a spectator I’m pretty sure I know where that destination is.

Given that my father has HD there is a good chance that amongst me and my sisters some if not all of us could well be struck down by this horrible disease. There is a test that would determine if I have the faulty gene and therefore could potentially develop the disease. But as there is no cure or any way of delaying it I don’t see the point of having the sword of Damocles hanging over me. I prefer to get on with life rather than worry greatly about if and when the symptoms might show. Besides something else could well get me before the HD works its magic. We are all mortal and we all have to deal with that fact in our own little way.

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