Huntington Disease Lighthouse Families

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Still not interested in being tested

Posted by CaturdayNightFever 
Still not interested in being tested
March 22, 2013 03:44PM
Greetings all!

I'll try to be concise. My mom's had HD for about a decade. I'm in my 30's, married, no kids, none coming anytime soon. I've never been tested, I really don't think about it much. My wife is not sure whether she wants to know or not. Financially, I'm doing everything I can to make sure she and I are OK in the event that I do develop symptoms.

With the possibility of HD looming over me for years, it's sort of forced me to enjoy my life (if that makes sense). The ambiguity has become a part of my life, and it keeps me going, because one day I may not be able to do the things I like.

I'm afraid this ambiguity is beginning to weigh on my wife, though.

Has anyone else experienced this?
Re: Still not interested in being tested
March 26, 2013 12:24PM
My husband, HD positive, as well as his mom(now deceased) and I were in the same situation as you are now. We also lived life to the fullest in the event that HD reared its ugly head. It eventually did. The years prior to testing were difficult for me as I was always watching for symptoms, although my phd seemed not to worry...it seemed to be a sort of denial. I did see subtle symptoms that were so minute, unless living with someone and knowing them in and out, they wouldn't be noticed. Slower gait, becoming disorganized filing paperwork, hesitations when turning. My worries increased and I found myself crying when I went for walks....And worried about how he was doing on the job where I didn't see what was happening.
It was much more stressful for me than him as he was sure he didn't have it and thought I was worrying for nothing. Finally when I was pretty sure, I made a bet with him about it. We went to the CoE and the neuro pretty much confirmed it before he even had the test done. He was still disbelieving. Although it was a devastating finality, it was also a relief because now we could face it and take action. I could talk openly about it rather than stuffing it. Come to find out that a coworker had been covering paperwork deadlines and helping him for quite some time. Thankfully we did make it to retirement age and he was able to go on extended sick leave to reach the time when disability payments started.
Hope you two will keep an open communication!!
Re: Still not interested in being tested
March 28, 2013 02:37PM
Thank you so much for your response. I really appreciate it. We continue to talk about it and I'm open to being tested if we reach that decision.
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