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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 26-07-08, 07:51 PM   #41
DH
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na.. he's just living life to the max, I love his sense of stupidity!
Fixed it for ya Pat.

I said I'd fill you in a bit, so here we go.

My name's David and I'm a non-symptomatic HD+.

That'll do.




Oh, ok, I'll fill in a bit more. (who said "t**t"?)
A couple of years ago I started noticing that my mum wasn't quite "right". Nothing I could put my finger on, but something was amiss. I'd vaugley heard that her father had HD, but I didn't know much about it; it was never talked about. So I did a bit of research, and found that some of what my mum was doing was similar to HD. I couldn't approach her directly about it for various reasons, so I took the indirect route and had myself tested. I knew it was 50/50, but I'm a lucky sort of guy... I also thought if I did have it then it would confirm it in my mum, and we could then start to prepare, both her, myself and most importantly my daughter.

The counseling process took an age; at the time, like many people, I couldn't see the point - I just wanted to know, pretty much like yourself. However, with the benefit of hindsight I'm glad the process did take so long. It made me look at aspects of myself and my relationships that I wouldn't have previously considered, and I feel as if the decision has not been rushed in any way. I like to be able to look back and think yep, I made the right choice. Even if I did get the wrong result....

So what's changed? Well, nothing really. I won't be symptomatic for another 20 years, and my theory is that medical advances will mean that I may never become symptomatic.
However, I find that I'm doing all the things I've wanted to do sooner than I would have done, in all aspects of my life. In that respect it has been a positive thing, because I try not to waste life.
But on the down side, it's making me unsettled in my relationship with my partner... and I can't tell if thats an age-related thing or the HD diagnosis. Hey ho.

So there you go. My HD history in a nutshell. Make of it what you will.
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Last edited by william; 27-07-08 at 09:23 AM. Reason: language!
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Old 26-07-08, 08:22 PM   #42
katiepie
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Think i'll add to DH's quick "who we all are".

I'm Kath tested negative in 1996. Both my sibs as you know wern't so fortunate. Mum is in a NH in the final stages and Bro and Sis are both diagnosed and symptomatic, but they have some very different symptoms.

Recently traced all my HD family after an estrangement of a decade and a move to Italy to live with my (new) partner. I moved here with my 3 girls and pet cat in 2005. Had a baby last year and really need a good nights kip.

When not on this board or being abused by my 9month old I like quiet and being creative with Yarn, among other hobbies.

I have been a member here since Jan 2008, and for helping me deal with my feelings about HD this is the best thing I ever did.

Welcome to the board.
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Old 27-07-08, 12:03 AM   #43
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And hello from me as well :)

Tested Sept last year HD+ but no symptoms yet, CAG repeat 40+/- 1 is what they said to me. Almost the same as me Dad (I had to ask for my repeat count in the pre-test councilling as they did say they don't like issuing it now because ppl can make assumptions... but hey-ho I wanted to know - and it's my repeat count)

Known about the HD in the family for years (Dad's brother very bad got it in his 40's) Me Dad didn't really start showing symptoms till late sixties which seemed to co-incide with his 2nd Liver transplant

Getting involved in research, plus other stuff too hopefully & the local group down here.

That's me - over and out

And welcome to the board too in case I didn't say it before
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Old 27-07-08, 12:47 AM   #44
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Hi Pat,

Nice to hear from you, I care for my husband, would like to know more about your life and where you live. My husband has a CAG of 39, he is sixty, I would reckon he's had a problem with certain things for at least seven years, making wrong descions and losing his job, doesn't matter now as we know what the problem is, hope this is a help to you, not sure if the CAG count matters sometimes, it may be an indicator, but nothing is written in stone,

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Old 27-07-08, 01:03 AM   #45
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I said I'd fill you in a bit, so here we go.
My name's David and I'm a non-symptomatic HD+.
That'll do.
And tonight I found out that my sister is HD+. And my mum found out about me. It was a fun evening earlier, I can tell you.

Bollox.
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Old 27-07-08, 02:24 AM   #46
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Hey Dave, Kath, and South Coaster, thanks for introducing yourselves and giving me an insight to your HD history.

Dave, like you I had no idea that we were at-risk until we noticed that something wasnt 'right' with Dad, he fell over in the park and we all laughed at him at 1st, but the falling became more regular, then he got diagnosed with HD at 55. His dad died in his 50's due to lung problems so no one knew he had HD, when my dad got diagnosed he had to tell me and my sister but also his 4 other siblings, this started arguments in the family they didnt want to accept it, but thats a whole other story :)

Kath, some might have told you that your lucky your HD- but im not sure that would be strictly true, from what i've seen its the lives of the carers that are really turned upside down and pushed to the limit.

Obviously ive been tested, I've got 4 days until I get my result, im keeping fairly upbeat about things, if I am positive then i'll probably start sky diving , bungie jumping, and throwing myself out of runaway blazing vehicles with DH :)

I just wanna say thanx to everyone here for being so nice and welcoming, i've just been speaking to Matt on MSN (at 2:20am - That guy doesnt sleep!), I really feel like i've joined a great community. I getting all nice warm fuzzies
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Old 27-07-08, 02:31 AM   #47
Patrick
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Hi Pat,

Nice to hear from you, I care for my husband, would like to know more about your life and where you live. My husband has a CAG of 39, he is sixty, I would reckon he's had a problem with certain things for at least seven years, making wrong descions and losing his job, doesn't matter now as we know what the problem is, hope this is a help to you, not sure if the CAG count matters sometimes, it may be an indicator, but nothing is written in stone,

Twamoons
I live in Romford, or rather I will be when I return from my year in Texas on the 1st September this year. I'm out here on a work visa for my bank (JP Morgan) i look after their electronic trading systems. You could say im a mediteranean cocktail of sorts as I have maltese, italian and french decendants, I have 1 sister 6 yrs older and untested with 1 child. I have 2 girls, Amy (2) and Zoe (1) and they are the most precious beings in my life and part of the reason why im getting tested. Im hoping for a cag repeat count of <27 for their sake.
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Old 27-07-08, 02:33 AM   #48
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And tonight I found out that my sister is HD+. And my mum found out about me. It was a fun evening earlier, I can tell you.

Bollox.
I'm sorry to hear that dude.
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Old 27-07-08, 08:48 AM   #49
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Hi DH

Very sorry to hear about your sisters result
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Old 27-07-08, 09:18 AM   #50
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Default Re: Hi I'm Pat

DH I'm sorry about your sister. How has your mum taken the news about sis & yourself?

My introductory tale for you Patrick (cos everyone else knows) is I cared for
my daughter Rikki who had jHD.
Her dad & I split before I knew I was expecting her, due to his behaviours & I found out he had been diagnosed when Rikki was 5...alerting me to her risk status.
A specialist assured me that children didn't get HD & that she would be over the age of 40 should she develop it. She was diagnosed age 13. (I so hope doctors aren't that unknowing any more)
Rikki died last October, age 27, after living for almost 14 years with it.
There are no more in my family with or at risk of HD but I still hang around here cos its a great place to come & just maybe, I might be able to be of help to someone.
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