Monday, January 31, 2011

What's My Number? (HD)

By mid-March I will know if I have Huntington’s Disease.
I watched my Grandfather die from it.  My mother has it, one of my brothers has it, the other three of us have not been tested.  I’ve decided it’s time for me to know.

I’m not going to discuss in this post what it is.  You can google it, if you wish.
It’s a very unpleasant genetic neurological disease.

I won’t explain now how they arrive at the number, but if your test results are 36 or above, you have Huntington’s.
It’s not one of those deals where you may get it if you test over 35.  You WILL become symptomatic at some point, though there’s no way of knowing when. 

My mom’s and brother’s numbers were both 41.

My mom had late onset (in her 60s) and my brother appears to be on a similar course, since he has no symptoms in his late 40s.  The “normal” is symptoms starting in your 30s or 40s.  Life expectancy, once you start having symptoms, is 15 – 20 years.   Longevity is not always a blessing!

As many have pointed out, there are a whole lot of other things that could take us out sooner, other than the Huntington's.  No one knows what’s around the bend.
My family has also experienced blessings as the result of this illness.
I think my parents might be enjoying life now more than ever.

I don’t think I have symptoms, but it’s a little tough to tell, since I already have chronic fatigue syndrome. 

Anyway, this is my informational post, to give a heads up. 
I’ll be posting thoughts and feelings about the approaching test, and thoughts and feelings once I know the results.
A WHOLE LOT of thoughts and feelings if I test positive, I expect!

I know that humor and living in the moment will be very important (as they are for us all).

I’ve decided to put an “HD” in parentheses after the titles of any posts involving Huntington’s, since some people might find it difficult to read.