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Testing, or at risk Discuss testing for Huntington’s disease, and living with the risk of HD

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Old 02-10-15, 12:40 PM   #21
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Join Date: Sep 2012
Location: Hastings, East Sussex, UK
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Default Re: First meeting with Guys last Friday - so confused :(

Hi everyone

Have a look at this [slide 10]: Juvenile Huntington’s Disease

This is the only reference I can find in the professional\medical\scientific literature:

JHD Symptoms Usually, one parent has HD

In childhood-onset HD, sometimes the child may develop symptoms before their affected parent.

So, it's almost like my son [CAG 56] and I [CAG 35]. He displays a whole range of JHD symptoms - but not seizures. Me, I'm just an angry old guy looking for social and domestic hd-solutions ...... with, hopefully, a laugh and some fun every day.

New Day; New Outlook; New Challenges; New Possibilities; New Outcomes; New Successes
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Old 02-10-15, 02:35 PM   #22
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Default Re: First meeting with Guys last Friday - so confused :(

Dear Brenda,

I will send you a message.

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Old 03-10-15, 07:42 AM   #23
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Default Re: First meeting with Guys last Friday - so confused :(

Oops Brenda......didn't mean to add to your friend's worries and spoil your weekend!! It was just that word "impossible" that struck me as odd/not quite right....but on the upside, your friend is relieved, and I hope she settles on a decision that is right for her regards testing .....
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Old 06-10-15, 07:10 PM   #24
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Default Re: First meeting with Guys last Friday - so confused :(

Originally Posted by Bell View Post
Hi everyone,

We had our first meeting at Guys on Friday to start discussions re: testing or not - my husband has HD in the family and is trying to decide if he gets tested or not. We'd like to start a family and time is running out for us!

The lady we saw was just lovely and we were there just under an hour but I am more confused than ever. It just suddenly seems so real and so scary. I feel as if we've opened a Pandora's box and now we can't close it again.

It was very emotional but so useful and has really made us both think and raised a lot of good questions for us both. It's also made us even closer and more of a team than ever!

I had to go to work afterwards (in hindsight I would have taken the day off) and my husband went and talked things over with his mum. I wished we could have spent the day together or maybe time to reflect ourselves was a good thing, I don't know.

It seems to have turned us upside down, we're both so confused. I'm not even sure why I'm posting here! I don't have any questions, I don't even think I'm looking for reassurance, just wanted to 'talk' to people who understood. No one knows about all this except the two of us and my mother in law - she's coming round for coffee on Thursday so I can talk to her too otherwise I think I'll go crazy.

I always thought I wanted my husband to be tested (I'm a big believer in knowledge is power), and he always wanted to remain ignorant but now we might have both changed out minds.

Anyway, I'm not sure I'm making much sense :) but thanks for reading this if you got so far. I'm so angry with this disease. Does that make sense??
knowledge is power is exactly what I thought too .. to know is to be prepared .. not sure anything can prepare you totally and as you can not "FIX" it is hard to live with . My hubbie tested 7 years ago and we do not regret it . with HD in the family we felt we would always be living with the am I aren't I will I won't I and that was worse then the I am and when .. and of course the test could have been negative . My hubbie made the decision to test and i supported him, I never gave him my opinion I just said it was his choice . It was upsetting to get the positive result but we have had chance to organise, plan we don't save for a rainy day we make memories .
Others say I don't want to know i want to live my life without worrying about it and hopefully they do I can not answer that one .
good luck this is a horrible disease and yes it makes total sense to be angry !!

good luck and take care x
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