Speaking Out ~ Living With HD

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Every person has their different view on Huntington's Disease so I won't try to explain it for them. But what I will do is explain how having a parent with HD affects my life and maybe somebody can relate to how I feel.

I first found out about Huntington's around one and a half years ago. My
parents decided to tell my brother, sister and myself that dad had the
disease. It wasn't long before both my younger siblings were in tears.

Me, I didn't know what to feel. At times I still don't. To put myself straight on what I was dealing with, I checked the medical dictionary. It defines Huntington's as "random twitching and general clumsiness, mood swings are inevitable, there is difficulty making decisions and memory loss". It also states that sufferers "commonly live 15 to 30 years and that no cure was available.
Right there and then I knew what it meant to me and how I felt. It meant that this disease would be tearing my family apart. It meant I'd be losing my dad.
How did I feel? I felt like Eddie Jordan seeing his only chance of a podium finish being dashed as Trulli is knocked off the circuit by Coulthard angry, upset and the question of why? comes to mind. As you probably have guessed, I'm a Formula One fanatic
Around the house I have more work to do so my dad can have more time to himself. When my friends call for me, the only reason I can give for not being able to come out is that I'm busy. That's fair enough.
Still, there are times when I'm asked to go places when they know I'm not able to and they wonder why I'm not coming with them.

I'd love to tell my friends why I'm busy or can't come out, but only a few of
them I can really trust and the others have problems of their own without having to worry about mine.

By now I've accepted that my dad has HD and there's a possibility that I have it
also. I enjoy each day as it comes and take the best out of everything.
I know that there are people my own age going through the same experience as I am,
and the only thing I can say is that in future years, things can only get better!

Ashling, Aged 15