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Anyone got any knowledge of Huntington's disease?

3 replies

othermother · 19/07/2010 15:08

My DH's mother died from HD and many of his aunts and uncles too Dh doesn't want to get tested for the gene, but I am so scared that he is showing symptoms of it. He's 42 now, and I think his gait has become more awkward, though it's hard to tell really as he's always had an odd gait. His memory has always been poor too lol! But it's at night where I've noticed a change. He's become more and more twitchy, his legs, his arms, his whole body sometimes. Last night he was making these quite big twitch movements every 30 secs to 2 minutes (I timed him cos he was keeping me awake he was so twitchy).

I'm absolutely worried sick, for him, for how we'll cope if he does develop it, and also really scared for our 2 children (they would have a 50% chance of getting it if DH is HD+ve)

Anyone got any reassurances or advice for me please?

Thanks.

OP posts:
AttilaTheMeerkat · 19/07/2010 17:00

You may find the website of the HDA helpful and I would urge you to make contact with them if you have not already done so.

www.hda.org.uk

othermother · 20/07/2010 12:04

Thanks Attila.
I've joined their forum. I'd actually joined it yesterday, but wasn't allowed to post without it being approved by a mod, so thought I'd see if anyone here knew anything. I'm an impatient so-and-so . I can post on there today though. Huzzah!

OP posts:
echops · 22/07/2010 09:10

A family friend has it. He started getting symptoms at around 53 and is now 61 and still living a decent life. His main symptoms are involuntary movments ( which is being controlled somewhat with tablets) and incessant talking. I'm now sure what the future holds for him but compared to the treatment his father got 30 years ago things do seem to have improved.

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