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October 22, 2004

"A Dignified End"

We've all seen what the last few years of what Huntington's Disease is like.

A dear friend of mine has cared for her father for many years. He's not bedridden yet, but you know its coming. It's hard for her to see her father fade away. There isn't going to be a 'cure' for him.

What makes it more difficult for her is that she has also tested positive for the HD gene. When she see's her father, she see's her own future. She amazes me. You have to be a strong woman to care for someone as she has for her dad these last few years.

So when I read articles like this one, they make me think. The article is about a woman with Huntington's Disease who is campaigning for an assisted suicide law in England. She saw her grandmother die at age 64, her 56-year-old mother is symptomatic and she has the HD gene. She's 36 and isn't showing any signs of the disease.

I'm worried about her and others I know in similar situations. She believes that if she doesn't commit suicide, she's going to die from Huntington's Disease. I doubt that she will.

So why do I say that? First, she has no symptoms. She's healthy. Second, both her mother and grandmother had a late onset of the disease. While it is no guarantee, it's likely she won't see symptoms for many years. Third, researchers are finally having success against this disease.

A 'cure'/effective treatment is coming. Scientists are now doing it in the lab and work is being done to repeat it in clinical trials. In addition, we also have a number of treatments available which may slow/postpone the progression of the disease.

This woman, who has every reason to fear this disease, believes that her family would cope better with her death knowing that she went in a way she wanted to go.

But what if she goes as she wishes, while relatively healthy, and then a cure becomes reality? Would her family grieve more, not less, knowing they could have had her many more years? While this obviously very caring lady is working hard trying to help the HD community, is it possible that her actions are signaling others that HD is hopeless at a time when there is finally real hope?

As with all things, each one of us will make our own choices and for our own reasons.

It might be surprising for some, but for many in our community the idea that there is now 'hope' is disturbing. It can be easier to prepare for the future when you 'know' what is going to happen. (Truth is, we never really do 'know'). But when someone has prepared themselves for years for their eventual decline and are then suddenly faced with the possibility of planning for retirement...it makes their lives uncertain again. And uncertainty breeds stress & anxiety.

It's time we start rethinking Huntington's Disease in our community. What was good advice a few years ago may no longer be good advice today.

I believe it's time we start making a stronger effort to keeping people healthy so that they may benefit from the coming treatments. We need to become more proactive against this disease. It's time we start fighting back and not just assume that "it's inevitable".

So, yes, articles like this get me thinking. One resulting thought...thanks to the researchers, my dear friend may never face what her father is facing today. That puts a smile on my face.

Posted by Dave at October 22, 2004 11:21 PM

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Posted by: Ger@rd at October 23, 2004 05:03 PM

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