Huntington's Disease

[martinez]

My grandfather passed with HD. My mom is 50 and is not showing any obvious indication of HD other than her legendary clumsiness and occasional incontinence, however I am 33 and lately not feeling myself. I notice I am off balance sometimes and have very occasional and slight ticks in movement. Most notably, there are days where my brain function seems slow and I cant organize my thoughts or speak clearly. I realize this could all be attributed to something else, however, there is always that seed of doubt of having inherited HD

My delimma is that my mom does not wish to be tested. Therefore, if I were to be tested, I'd automatically know the medical diagnosis for her. If I were diagnosed, there is just no way to keep that from her. Has anyone else run into this dellimma?

Also, what is the benefit of knowing in the early onset? Since there is no cure, should I just go about my business? I want to have children within the next 2 years. I also struggle with bringing a child into the world not knowing for sure if I have this disease or not.

Any advice would help.

[handy1986]

How many brothers and sisters does your mother have . Becuase with huntingtons if she is an only child then there is a fifty fifty chance that she may have it. And if you want to be tested then get tested that way you can plan a head. I work in a huntingtons unit at a nursing home and i know that some of the people there wish they had know before hand so that way they could spend as much time with their flamily while they were still able to with out help. You can also do some of the things now that you want to do before the disease hits.

[gjtds95]

I would encourage you to get tested anyway because there are there are things you could be doing proactively to possibly delay onset or slow progression. True ,there is no cure, but there is alot of promising research and clinical trials that you could be involved in even now. I say this because my daughter started having episodes of balance problems and difficulty with speaking, like slurring her speech for about a year and a half before we finally has the courage to go for an evaluatuion. It was
a hard decision because she is only 17. Even though we are devastated that she has HD, now that it is out in the open we can lean on our family and friends and get her involved with some therapies to help with her symtpoms. We can also be more realistic about planning and decision making for the future until a cure is found. Your mom could benefit, too! I will be praying for you and for God to give you peace and wisdom in your decision making.

[handy1986]

The only way to delay huntingtons is to go in to a med. research program. but with huntingtons it can skip generations .It can be very hard to be in one of the med. research test because you have to meet requirments to be in them. It may not delay huntingtons in the end.

[gjtds95]

I have never read that HD skips generations since it is an autosomal dominant gene - please check with your neurologist on that one.

[Aunt Niecie]

A note to handy1986’s post: “Those who do not inherit the mutated gene will not develop the disease, nor will their children; HD does not "skip a generation". Genetic testing is available to determine whether or not a person carries the mutated gene for HD. Those who do not inherit the mutated gene will not develop the disease, nor will their children; HD does not "skip a generation". Genetic testing is available to determine whether or not a person carries the mutated gene for HD.”
http://www.huntington-assoc.com/huntin.htm