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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 06-03-10, 11:58 PM   #11
DH
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Default Re: And so it begins... again.

I think I would echo what Dolphin said, just try to live well for the sake of living well. That doesn't mean strenuous weee fit routines, just having nuts and blueberries instead of a mars bar (you prolly don't eat mars bars, but you get my drift...), that sort of thing. Treating your body and mind well so that they in turn will treat you well and last longer. It also means not worrying yourself about "naughty treats" as fish and chips and a few beers tonight confirm for me!!

Also, and I'm sure the councillors will ask this, if you're not going to have children why do you need to test? All that will happen is that you'll start guzzling supplements that may or may not have an effect and your insurance premiums will go up....

Oh, and did the veggie bus ever get off the ground?
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Old 07-03-10, 02:10 AM   #12
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Default Re: And so it begins... again.

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I think I would echo what Dolphin said, just try to live well for the sake of living well. That doesn't mean strenuous weee fit routines, just having nuts and blueberries instead of a mars bar (you prolly don't eat mars bars, but you get my drift...), that sort of thing. Treating your body and mind well so that they in turn will treat you well and last longer. It also means not worrying yourself about "naughty treats" as fish and chips and a few beers tonight confirm for me!!

Also, and I'm sure the councillors will ask this, if you're not going to have children why do you need to test? All that will happen is that you'll start guzzling supplements that may or may not have an effect and your insurance premiums will go up....

Oh, and did the veggie bus ever get off the ground?
The bus did get off the ground but it's hurtling back to earth as I type at the moment. 2010 is no time to be self employed.

My sister thinks that I shouldn't bother with testing but I've always thought that knowledge is power and forewarned is forearmed. I've made it to 30 without letting my HD risk affect my lifestyle and now I think it's time I knew the score and acted accordingly. With things like epilepsy I've always been one to go out and get as much info as possible rather than take doctors' advice as gospel. Testing for me is about taking responsibility and empowering myself, whether that be in terms of maintaining wellness as long as possible or getting a negative expanded gene test with plenty of time to enjoy that diagnosis. I say that with the knowledge that mum got ill at around 50 and if I get the expended gene from her I can still hope to get symptoms at around the same age. I know it's not definitive or anything but it's what I dare to hope and expect. So even a positive result could mean another 20years for me, other health issues, accidents and acts of God notwithstanding. I think that although a desire for kids makes HD risk more prescient, it shouldn't be the only reason people choose to be tested. I want to know what provisions I should make for my future and whether I need things in place like a living will detailing end of life choices. One thing I learned with my mother is that there's a fleeting window of opportunity between being diagnosed with symptoms and being affected significantly by dementia. If I want to be able to refuse certain treatments/interventions or even plan my own death if the law allows for that in the future, those choices will have to be made while I'm asymptomatic and deemed capable of informed consent.

Another things that plays on my mind is the lack of knowingly HD+ pre-symptomatic people who participate in medical studies. I know the value of such research and the challenges faced by people who want to run clinical trials for treatments for such a rare disease. I know that my HD status will be valuable to that process and also that I will have no trouble participating in trials and handing over biosamples. My diagnosis, medical history and so on can be a donation in itself towards finding a cure. It would give me more purpose in the face of a HD+ test result.
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Old 07-03-10, 02:16 AM   #13
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Default Re: And so it begins... again.

You're basically testing for the right reason... yourself. Also you want to help clinical trials, which is probably the most important thing we can do in the HD community... certainly if we want to find treatments it is.

All I will say is even if you do test positive, don't expect to be able to suddenly exercise daily, eat all the good stuff, play brain teaser everyday... . It wont happen that easily, you will still behave the same way you do now and that's something you would have to work on to change.

Tc, Matt.
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Old 07-03-10, 02:19 AM   #14
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Default Re: And so it begins... again.

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All I will say is even if you do test positive, don't expect to be able to suddenly exercise daily, eat all the good stuff, play brain teaser everyday... . It wont happen that easily, you will still behave the same way you do now and that's something you would have to work on to change.

Tc, Matt.
Oh I know, believe me. If nothing else I'll be out of excuses. I don't expect a test result to metamorphosize me into a marathon sprinting, mountain scaling freak of nature but it'll definitely give me the kick up the bum I need to make some definitive changes to my lifestyle. :p
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Old 07-03-10, 10:59 AM   #15
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Default Re: And so it begins... again.

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the lack of knowingly HD+ pre-symptomatic people who participate in medical studies.
Yep, we are in great demand.

I agree with everything you've written, and can understand completely your reasons. I just like to present the other side every now and then.
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Old 07-03-10, 12:07 PM   #16
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Yep, we are in great demand.

I agree with everything you've written, and can understand completely your reasons. I just like to present the other side every now and then.
That's more than fine, that's pretty much what I posted here to find out. :)
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Old 07-03-10, 06:09 PM   #17
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Default Re: And so it begins... again.

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I don't expect a test result to metamorphosize me into a marathon sprinting, mountain scaling freak of nature
What you trying to say?
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Old 07-03-10, 08:59 PM   #18
Scarlett D.
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Default Re: And so it begins... again.

Hi Amaryllis,

Sorry to be a little late with this - I have had a buse few days and somehow missed this thread! I just wanted to wish you luck. I really, really hope you get a good result!

I am 25 and in the early stages of HD. If you ever need to talk, feel free to PM me anytime!

Take Care,
Scarlett
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Old 07-03-10, 09:55 PM   #19
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Default Re: And so it begins... again.

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What you trying to say?
She's calling us freaks Matt. Gotta say, she has a point.
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Old 07-03-10, 11:28 PM   #20
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Default Re: And so it begins... again.

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Dave,
Cheeky young pup....
I prefer "mountain scaling freak"
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