Huntington's Disease Support Group

Huntington's disease (HD), formerly known as Huntington's chorea, is a rare inherited genetic disorder characterized by abnormal body movements called chorea, and a reduction of various mental abilities. The symptoms of Huntington's disease occur gradually over time - there is no sudden loss of abilities and it is hard to determine when symptoms initially occur.

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Genetic & Metabolic
/ Huntington's Disease Support Group

Genetic test results

Elslok
Elslok

Hi there,


HD runs in my husband's family, his grandmother has it, we don't know if his mother has it and he decided to go for the genetic test. He gets his results in two weeks and I am going along with him to support him. I guess I'm just wanting advice on how best to support him? He says he isn't bothered by the outcome, that he only wants to know so he can plan...but I can't help but feel that is a front..? What can I do for him?

arfie
arfie
My husband put on a strong front when he went for his test around 2k, too, but. . . The fairly simple test hits on levels that we only sorta, kinda understand until we lose the theory and actually live through the experience. A decade and a half later, he is still sorting through the experience. He tested negative which gave him a sort of survivor's guilt as he watches other family members who were not so lucky.

"Ears open, mouth shut" was my mantra through the process. I felt it needed to be about him, for him and by him. I was just a presence to lean on and open ear to hear him when the need arose. I took a "busy bag" full of odds and ends to keep myself occupied when silence was the need of the moment.

One of the things we did is sandwich the test in between vacation activities. We spent some time at the beach before and some time in woodlands after. It helped.

Keep us posted, Elstok. We care.
Elslok
Elslok
Thank you. The difficult bit for us is we have to lie to his mother, she doesn't want to know if she has it or not and if he tests positive then she clearly has it too. Then there are our three beautiful children, all three or under. Obviously it impacts on them. Fingers crossed for the eighteenth. X
arfie
arfie
Hubs didn't even mention it to anyone in his family until long after the results were digested. He wasn't sure he wanted to know, either, but I went kamakazi on him when our son started having anxiety attacks over it in High School. Either you let a phlebotomist draw the blood or I'll get the sample to the best of my combat/engineering trained ability. His parents were in full-offensive denial of "The H-Word" to the bitter end. His younger brother stayed in denial of it for as long as he was able, but the dialogue finally started after the symptoms were too pronounced to ignore. He and his family are looking far more graceful with the open approach than his parents did with training the proverbial elephant to hold a Christmas Tree. We dance with what the Cosmos send us. . . It is not about being perfect. It's about working it out.

"Small steps, big faith and lots of prayer" has been our shared mantra through it all.

Crossing fingers and toes with you, Elslok. May the healing mysteries lead you to where you need to be.
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