Living with ALS: Beyond the Ice Bucket

Karen quote

By now, you’ve heard of the Ice Bucket Challenge. Chances are, you may have even dumped a bucket of ice water on your own head and, hopefully, you’ve made a donation to ALSA.org. I’ll admit, there were a few times when I thought, jeeze, this Ice Bucket Challenge is really taking over my news feed. But, then I heard that ALSA.org had raised something like 4 times the amount it had raised year-to-date last year. And that number just kept growing. Last check, the Ice Bucket Challenge has raised over $70 million dollars. That’s awesome.

You see, we don’t talk much about ALS because, well, the disease is devastating. It’s hard to talk about. And that’s why it’s so important that we do.

Karen Shideleff was diagnosed with ALS three and a half years ago after feeling symptoms for about six months. Because Karen’s mother had familial ALS, Karen lived with the knowledge that she had a 50/50 chance of developing the disease herself.

I’m honored that Karen agreed to talk with me about her life with ALS and how the disease has affected her family. You can read a condensed version of our conversation below and watch the video of our chat here.

Caitlin: To begin with, you lost your mother and grandfather to ALS and you told me you were the 25th person in your family tree to be diagnosed. When did you first realize that ALS was something that you might one day be diagnosed with?

Karen: When my mom was sick, my parents didn’t want to point out to us that it was a hereditary form of ALS because my three sisters and I were pretty young. We were 16,18, 19, and 20 years old when my mom was diagnosed. And we didn’t know our grandfather, so it wasn’t something we had lived through prior.

When I got into my 20’s I was in nursing school and I was taking classes in biology and genetics and I kind of put all the pieces together. It was very shocking to figure out that I did have a 50% chance of developing ALS.

Caitlin: And that’s because it was familial ALS, which I read accounts for about 10% of all ALS cases?

Karen: Right, so they say 5-10% of all ALS is familial. The rest is sporadic which means they don’t know why it happens, it’s a random occurrence. So familial ALS is rare, even within the umbrella of ALS.

Caitlin: So when you realized that there was a 50/50 chance that you would develop ALS, how did that change your life? How did it change your plans?

Karen: I was 21 or 22 when I figured it out and I was already dating my husband so at that point I made the decision that I didn’t want to have children because I didn’t want to take the chance of passing that gene on. It’s a really personal decision. I never had an overwhelming urge to have children and my husband didn’t either, so for us, it was a little bit easier of a decision to make. But, you know, it gets harder and harder as you get older and all your friends and family are having children. So it’s a decision we just consciously made throughout our relationship and our marriage.

And really, we just try to enjoy life. We’ve done a lot. We’ve traveled a lot, we enjoy spending time with our friends and family, first and foremost. And we’ve really just built our life around that. So I always say, I don’t have any regrets with my life. I don’t feel like I’m missing out on anything, which is good. I don’t know how many people can say that.

Caitlin: Is there a constant fear when you know you could develop ALS? You know, I think of the things people get anxiety over and something like this is just more than most people could imagine. Did you live with the fear until you were diagnosed? How did you handle that?

Karen: It was a constant fear. I would be lying if I said it wasn’t. And it’s still a constant fear for my sisters, unfortunately because they don’t have any idea if they’re going to get ALS.

But, every time you stumbled on something or you trip and fall or you get muscle twitches, anything that might feel like the beginnings of ALS really just sets it off in your head and you have to convince yourself, I’m just tired, or I just exercised too much. So, it’s very hard. It’s constantly on your mind. And unfortunately for me, it became a reality.

On the flip side, at least a diagnosis when it’s familial ALS, you already know so much about the disease, so I think the acceptance portion might be a little easier to come by. Whereas, somebody who just gets stuck with an ALS diagnosis and doesn’t know what it is, that’s a really difficult time to understand what it is and explain it to your friends and family. So, in some ways, I know it sounds ridiculous, but I’m glad I knew what I was walking into.

Caitlin: That doesn’t sound ridiculous. I think it must be damn near impossible to accept either way, but it does make sense.

Karen: Well, my friends and family all know what ALS is. So when I told them I was diagnosed, I didn’t have to explain what the disease is. And I had been fundraising for ALS for years, so even my co-workers and people I’ve been friends with all knew what ALS was.

Caitlin: So, how did you finally get diagnosed and what was it like to hear those words?

Read the rest of this post at Vital Chatter.

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