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Posts Tagged ‘ALS’


Yesterday, I crashed; went back to bed in the morning and stayed there until I dragged myself out to shut my computer down at 9 pmish. There’s not a part of me that doesn’t still hurt right now. Totally par for the course, although I think this is something contagious, since hunny is feeling rotten, too.

In the midst of this, he came home with some news. I’m still bothered, even though we knew it was a possibility, and even though it’s had a little bit of time to sink in.

A friend of our has been more or less diagnosed with Amyotrophic Lateral Sclerosis (ALS); aka known as Lou Gehrig’s disease. I say more or less because the dx is 97% sure (I think they’re sll waiting on additional test results).

I was first acquainted with ALS over 20 years ago, as an inservice for work. At the time, I was doing contract and home health, and those in the medical field know, you have to do a certain amount of inservices to keep your license.

It was then that I realized the sheer horror of this disease. I know a lot of people think Alzheimer’s is the worst- but it’s not. This is, to summarize, the opposite of Alzheimer’s. Why?

With Alzheimer’s, your mind goes, but your body stays. Yes, eventually the body deteriorates and mobility skills are lost, but the person isn’t aware of it at the time. Family members are sad, knowing they aren’t recognized anymore; sad to know the ability to speak has been lost. But still, the person is locked inside their own mind, while the brain loses mass, and isn’t aware of what’s really going on around them.

Not so with ALS. While in some, dementia does happen, it’s not a given. Nope. With ALS, the body fails, while the mind is kept intact. The person is completely mentally aware of what’s going on- that they can’t eat by themselves; that they can’t walk; that they can’t talk. This, to me, is like a living hell.

ALS is 100% fatal. There is a single drug available for treatment, although there are others in clinical trials.

As the body fails, those affected often end up with tracheostomies, so they can be hooked up to breathe. The breathing muscles have stopped working. People often get feeding tubes, because they’ve lost the ability to chew and swallow.

One of the early symptoms is muscle wasting. Our friend is a burly former Navy sailor in his late 40s. His daughter is young; maybe 8 (I forget). He and his wife just finished building a house a few months ago. He’s finally gotten his life to where he wants it.

The average life expectancy after diagnosis is 3 to 5 years. That being said, there are some, like Stephen Hawking who have lived significantly longer with the disease. Our friend’s aunt lived around 10 years before succumbing to ALS (which would indicate he has the familiar form of ALS).

It is scary to see the rapid rate of muscle loss; so much so that even a week after his last testing, he had lost another something like 8% (or was it 3% – at any rate, enough for them to haul him back in for significant additional testing).

Even though I feel junky and have my own stuff to deal with, I’m bothered. I’m bothered because I know too much about this disease. I’m bothered because they (he and his wife) know too much about this disease, and know what’s coming.

I’m bothered because he’s not much older than we are, his wife is younger; his daughter is around the same age as my two younger girls and we (my husband and I) can identify with them. I’m bothered because it’s another reminder that while we’re all going to die, we have no guarantees.

It’s easy to sit back and think we have all the time in the world; all the time in the world to get our finances in order; all the time in the world to do the things we want to do; all the time in the world to get right with God.

And you know what? We don’t. We could be taken in a split second; unexpectedly. It’s easy to be in a place where we think about getting hit by a bus or being in an accident and feeling it’s unlikely, so let’s not worry about it.

When I got sick, that thinking went out of the window for me.

I’m bothered, wondering about these things for him. It’s tragic. It’s heartbreaking. There’s no way to console someone when this is staring them in the face.

I’m bothered, because I know to a degree how he must be feeling; especially to the point of diagnosis. And now to have the answer which is *this* and to on the one hand have some sense of relief; on the other hand to have all the feelings that go along with a fatal diagnosis (which I don’t have).

I’m also bothered, because to some degree, I’ve experienced the wrong diagnosis, and I know how that gives hope when you get another diagnosis. He, too, was told he had Lupus. Now he’s being told it’s ALS…..

I can’t do anything about being bothered. I can, however, pose the question “Are you ready?” and hope folks get there.

And, if nothing else, I can suggest people learn more about ALS. Here are some links with really good information:

http://www.mayoclinic.com/health/amyotrophic-lateral-sclerosis/DS00359

and http://www.alsa.org/about-als/

ALS. The worst disease ever, in my book. 😦

 

 

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