huntingdons advice please

[agirlikeme]

DP's brother has finally been diagnosed as in the latter stages of this awful disease....I have been sure for a long time this was what it was but due to the symptoms of the illness it has been impossible to test him.......he became very aggressive adn would not go to be tested.

This means that one of his parents has it (I am 100% sure it is DP's dad as he has shown a slow decline over the last 15 years or so)....I am now absolutley worried sick that DP has it, we have 2 children. DP is 49 now...all the sites I have been on say that this illness comes out in 30 - 50 year olds, I want him to be tested but am afraid of what we might find out....Is there anyone out there who knows anything about this illness...I have read tonnes of stuff over the past 24 hours but just wnat someone to tell me it will be ok....god this is a mess

Hi, signed in with old name and this thread was on my watch list.

My dad has HD, his mother also had it. My dad is 62 and increasingly poorly. He can't drive, and can't really cycle anymore (he was a keen cyclist). His younger sister also has it. Last month we buried his brother at 56- he was an acloholic and we think he had it- he was impossible to test.

I have decided not to get tested as I couldn't cope with a positive diagnosis at the moment- I may do in a few years time when my children are older.

I was just wondering if any of you are still around, would be interested to know how you are getting on in terms of caring for relatives, testing, anf the general fear, depresiion and uncertainty that come with it (or is that just me?).

I sometimes feel like I am literally going to explode with it hanging over me.

agirl.., have dc tested, at least you will know and in time they will know. I don't agree with genetic counsellors saying not to have children, surely if one knows s/he is a carrier, then there probably is a genetic test to check if the unborn baby has it. That way, depending on severity, you at least have options open.
Some neuro conditions can be managed to some extent (I am no expert on Huntingtons, but my ds progressive neuro deterioration has been largely reversed and improved through diet), so don't give up hope completely.