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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 22-07-08, 09:04 PM   #1
Patrick
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Default Hi I'm Pat

Hi All,

Im Pat and i'm and Alcholic.. Doh wrong forum!

I'm 33yrs old, Married with 2 wonderful girls, in terms of huntingtons im 'at risk'. My Dad was diagnosed 12yrs ago and died this April, ever since he was diagnosed I was adamant that I wouldnt get the test done.. whats the point, theres no cure right? but as I saw Dads condition get worse my view on that had slowly changed, there may be no cure.. but if i'm gonna get what my dad had.. I wanna know about it! and prepare (as much as possible).

Im a UK national but im working in the states, I return to the UK in September, I decided to get tested out here mainly because of the anominity factor - my USA test results stay in USA, and I can get the test done without my family knowing... they've just had to deal with losing dad they dont need to be worrying about me, my wife is the only person who knows and is sworn to secrecy.

I was tested 2 weeks ago, I went to get my results yesterday and the doctor greeted me with a 3 page result report and told me what good shape im in except for my cholesterol, I thought he was saving the best till last but when I asked him 'what about the big one doc? what about huntigtons?' the blank look on his face said it all.. they tested my blood for everything else other than what i actually asked for! maybe the NHS isnt so bad after all! Anyways, after much deliberation I decided to go for another test yesterday, I get the results next Wednesday. I hate needles, they better get it right this time! :)

I havent really thought much about the consequences of the results, i'll cross that bridge when i come to it, obviously I know whats waiting for me if i do have it. My biggest concern are my girls, obviously if i have it.. they might too.. and then my wife.. ive seen the hell my mum went through and I wouldnt want my wife to go thru that.. but conversely (and somewhat selfishly) i'd want her and my family around to help me if I did have it..

Anyways, sorry for the long introduction, my mum told me about the HDA and how they helped her and dad, she recently donated dads motorized wheelchair to them which has found a home already, so I thought i'd pop on and say 'Hi!'..
Roll on next wednesday!

Pat..
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Old 23-07-08, 09:11 AM   #2
myrna
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Default Re: Hi I'm Pat

Hi Pat,

Welcome to the HDA message board. I can hardly believe you went to test for HD & it didn't happen. How frustrating that you have to wait all over again. Still its good to know that everything else is well with you though...that's a good start.

Wishing the best results for you.
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Old 23-07-08, 09:21 AM   #3
Brian2001
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Welcome Pat!


Brian.
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Old 23-07-08, 09:25 AM   #4
vlbayliss
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Default Re: Hi I'm Pat

Hi Pat
Welcome to the board ur mom was rightto tell u about the board as it helps everyone in different ways, everyone on here is brilliant. I wish you all the luck in the world for ur results, my thoughts are with u and ur family.
Tak care and keep in touch with the board
Vicky x
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Old 23-07-08, 09:27 AM   #5
Toni
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Hi Pat,

Welcome to the board. I am really sorry about your dad.

I can't believe you have to go through waiting for the results again!

Toni x
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Old 23-07-08, 09:29 AM   #6
katiepie
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hi Pat and good luck mate.

XXXX Kath and lizzy
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Old 23-07-08, 09:32 AM   #7
poppysox
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Hi Pat

Welcome to the board I hope you get a good result for your test this time, so sorry to hear about your dad
take care
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Old 23-07-08, 10:46 AM   #8
millymolly
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Hi Pat

Welcome to the board and best of luck for next Wednesday.

MM
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Old 23-07-08, 12:39 PM   #9
lucyloo
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Hi Pat
Welcome to the board, good luck for Wednesday, let us know how you get on.
Lucy
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Old 23-07-08, 01:45 PM   #10
Nelly
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Default Re: Hi I'm Pat

Hi Pat,

Welcome to the board. It's good to have you on here especially as you seem to have a good sense of humour and we all appreciate the fun stuff along with the serious stuff!

So sorry to hear about your Dad. I can't believe what happened when you went for your test results!! How frustrating when you have no doubt psyched yourself up for that moment only to be told come back next week!! Wishing you all the best for your result!

Paula
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