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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 11-05-10, 03:46 AM   #11
Wanderer
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Default Re: I have got my result

Thank you for so much kind words and advice. As you can imagine life is very hard not just for me at the moment, but my family is finding it hard as well. I am married and have 2 children, I have told my oldest who is 11. At this moment in time I dont appear to be symptomatic but the stress seems to make me think I am. anyway I think you understand what I am trying to say.
thank you all.
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Old 11-05-10, 09:49 AM   #12
kayleigh
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Default Re: I have got my result

hhiya im m so sorryy to hhear abouut thiss i hhope thhat youur ddoingg ok:)
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Old 11-05-10, 12:40 PM   #13
telibeli
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Default Re: I have got my result

Please also look under the thread for PREDICT HD. I wont bother trying to explain it as DH has already done so and his explanation is far more eloquent than mine could ever be. If you haven't already done so you will find this an interesting thread. It's under treatments and wotsits. I did try to link it here but failed. Sorry.
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Don't wait for the storm clouds to pass, learn to dance in the rain.
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Old 11-05-10, 04:46 PM   #14
jillb
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Default Re: I have got my result

Hi Wanderer

Sorry to hear things are so difficult at the moment.

Hope you feel more focussed soon.

Jillx
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Old 11-05-10, 08:11 PM   #15
Dolphin
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Default Re: I have got my result

Dear Wanderer

I thought when I tested that I probably was symptomatic. I had a neurological test about 4 months on from the diagnosis that didn't really set my mind at rest.

But I've had 2 more annual check ups since where I've been OK. I think it is very very normal to experience a high degree of stress with a lot of physical symptoms that you can easily misinterpret.

In some ways I found talking with my children was a blessing because it forced me to be strong and to try to accentuate the positive for them - research is coming on leaps and bounds, all the evidence is that a good diet, plenty of sleep, lots of exercise etc will help delay onset. Just as long as you can also have times to be weak as well. This is the toughest thing I've ever had to face and I am constantly amazed at how people cope with it.

Dolphin
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Old 11-05-10, 09:27 PM   #16
kayleigh
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Default Re: I have got my result

Quote:
Originally Posted by Wanderer View Post
Thank you for so much kind words and advice. As you can imagine life is very hard not just for me at the moment, but my family is finding it hard as well. I am married and have 2 children, I have told my oldest who is 11. At this moment in time I dont appear to be symptomatic but the stress seems to make me think I am. anyway I think you understand what I am trying to say.
thank you all.
hhiya we all uderrstannd howw hard itt is to cope wwith and its evven hharderr wen therre arre kidss involvedd
takke carre:))
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Old 20-05-10, 02:46 PM   #17
PJ
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Default Re: I have got my result

Quote:
Originally Posted by Amaryllis View Post
Sorry to hear you tested HD+ I'm going through the testing process myself soon so I sympathise. I hope you're coming to terms with everything ok and that you've been offered adequate aftercare by your geneticist.

There are some pro-active things you can do if you want to. Non-symptomatic HD+ people are advised to take Co-Enzyme Q10, Creatine and get lots of blueberries into their diet. You can also join the European HD Registry if you want to, where they want to study knowingly HD+ pre-symptomatic people and gain a better understanding about what triggers HD in the brain and dictates which areas are affected first. By the time people have noticeable symptoms, HD has been attacking their brain for a couple of years so the Euro Registry wants to get enough people involved in the study for it to be legally and medically relevant. Because HD is so rare, knowingly HD+ pre-symptomatic people willing to participate are absolute gold-dust. If you contact them, you'll be invited to go along and give your medical history and some biosamples (blood & urine) if you want to.

Clicky

So in some ways, knowledge is power. You can choose to be part of finding a cure. By taking good care of yourself and taking a few supplements you can also help to delay the onset of HD.

With regards taking creatine, blueberries & Co-enzyme Q10 I noticed you said pre-symptomatic, does that mean these are no good once you start showing symptoms?
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