Huntington's Disease Support - The Good, the Bad, and the Ugly
"The note of hope is the only note that can help us or save us from falling to the bottom of the heap of evolution, because largely, about all a human being is, anyway, is just a hoping machine." ~ Woody Guthrie
For several weeks now, I've been participating in a Facebook forum "Huntington's Disease Support - The Good, the Bad, and the Ugly." The posts on this page have been enlightening and a blessing. Folks ask questions, seek advice, and lay out their heartache and fear. We have even had a discussion about meeting up at the HD convention this summer in Dallas. I'm putting the link to the FB page on my blog page.
I've been able to touch base with some folks who, like our family, struggle with explaining this disease to a child or sibling who is also developmentally delayed. It is comforting to know that we are handling this as best we can. We rarely talk to Lacy about HD, simply because he does not accept our explanations of why he is becoming weaker and less able to walk, eat, and sometimes talk.
Everyone who deals with a debilitating disease - especially those "incurable" diseases like ALS and HD - strives to make the most of the time, and to not waste energy on self-pity. It is never far from our thoughts, this knowledge that time is limited. We don't spend every day fretting over the "time we have left" because that would rob us of the time we have now.
Here's the ugly: Our loved ones fall, choke, and are rendered silent by this disease. I know that many families have lost their loved ones recently, and many more will lose them in the coming months. Parents will bury children, children will bury parents and siblings, friends will lose friends. Whole generations are sometimes wiped out by this disease.
Here's the bad: There is no cure, no treatment.
Here's the good: There is hope. HD is the most curable incurable disease out there. Research is very promising. Perhaps in our lifetime there will be a cure or at the very least a treatment that will turn HD from a killer into a chronic illness.