My Mum...

My Mum has Huntington's Disease. This is a genetic illness and it is hereditary.  Basically it causes damage to the nerve cells in the brain. As the damage progresses, HD reduces people’s ability to walk, talk, think and communicate. Symptoms include uncontrolled movements, changes in mood and behaviour and altered thought processes. Eventually individuals with HD become unable to look after themselves and need full-time care.  If an individual has one parent with the HD gene, he or she has a 50/50 chance of inheriting the gene and developing HD themselves.

HD comes from my Grandfather's side of the family.  He had it and so did one of his sisters.  The other sister did not inherit the HD gene.  HD does not skip generations.  This basically means that my sister's children are not at risk of the Disease if she does not develop it.  My sister and I could both get it - or neither of us could get it.

Like any other hereditary illness, the speed at which symptoms develop can vary wildly.  Some people can start displaying symptoms in their 30s.  Others don't see anything until their 50s.  We are lucky that our 'version' doesn't really manifest itself until people are in their late 50s.  After that, it follows the standard pattern of deterioration.

I am so proud of my Mum.  She has fought the symptoms and forced herself to keep going.  She tackled each stage of her deterioration and found a way round it - until now.  Today she and Dad called in for lunch after church.  After we'd eaten Dad and Mark went off to do a job and she just sobbed in my arms because she's so frustrated.

She walks badly and is exhausted by her own body as it jumps around.  The constant movement is putting pressure on her joints and muscles and she's in a fairly constant pain.  The involuntary muscles movements can also choke her when she's eating.  There are certain foods that she no longer eats or wouldn't tackle in public.  We understand her speech - but she's having greater problems communicating with people who are not used to it.  She was 69 at the beginning of September.

She nursed her Dad through the illness and knows exactly what's going to happen next.  We don't save things until tomorrow anymore.  Hopefully this recent period of deterioration will stabilise soon.  This will give Mum time to work out new ways of living round these lastest inconveniences.  She's a very brave woman.

Nevertheless I can't begin to describe how hard it is to be part of a family with HD.  Fortunately I'm close to my sister and we support each other.  Sorry that this is another gloomy post.  It's just that Mum's tears today have really unsettled me.  As you've probably guessed we are normally a 'get on with it and cope' family!

Welcome to Sandra and Sonny. I've tried to find your blogs so that I can follow you too - but I can't seem to find any links.  I'l try again in a couple of days.