Anyone active in Maine’s outdoors scene either knows or knows of George Smith.
For 18 years, he served as executive director of the Sportsman’s Alliance of Maine. He also hosted a TV show called Wildfire, and is perhaps best known for his articles, columns, blogs and books about the Maine outdoors, sporting camps and the sights and sounds of the state he loves.
In one of those columns last week, Smith revealed that he has been diagnosed with ALS.
Maine Calling’s Jennifer Rooks spoke with Smith and with Nell Davies from the ALS Foundation on Friday.
Smith: People say, ‘George you seem so hopeful and OK with this.’ I say, ‘Well what is the alternative?’ Anger, depression? That’s not me. And then as I researched it and talked to Nell, who’s been a huge help to me, I decided I really should share this with the public because I’m learning a lot. Everything from insurance to care throughout the whole state. It used to be that you pretty much had to go to the Lahey Clinic to get help with ALS. We have some wonderful care right here in Maine now, including Nell’s group. So I actually stopped going to Lahey Clinic — I’ve got all the care I need right here.
Rooks: Nell, tell us how George’s story is similar or different than other patients of ALS that you know.
Davies: It’s very similar in many ways. ALS hits everybody differently. There are three regular, different types of onset usually. There’s most people’s limbs, but there’s also quite a large percentage that their onset is “bulbar” they call it, where their speech is first affected. And then there’s a small percentage that have the respiratory affected first. The symptoms usually are subtle when they first start. So oftentimes it takes a really long time to get diagnosed.
Smith: I was about a year into it before I actually got the diagnosis.
Rooks: And you haven’t been telling people?
Smith: Only my family and closest friends, but now I’ve lost so much weight. I can’t do anything with my fingers. My voice is changing. People were noticing. So I said, ‘Now is the time to start talking about it, sharing it with the public.’ But honestly I was overwhelmed by the response to that column, because I loved the ones that said, ‘George, I haven’t usually agreed with you, but…” So many people said they had actually, after reading that paragraph, started thinking about their own priorities, because that was my message and if even half the people that said they did it did it. I feel I really accomplished something.
Rooks: Nell, can you tell us, what is ALS?
Davies: A lot of people think of it as a muscle disease, but it’s actually a disease of the brain and spinal cord where the motor neurons degenerate and die. The brain and the spinal cord lose the ability to connect with the muscles.
Rooks: Do we know if there’s a cause, if there are triggers?
Davies: There’s still a lot unknown. There’s a huge amount of research going on, but it seems as though there is a genetic component, and there’s a small percentage of ALS, like 5-10 percent of people that do have it. It runs in families. But there’s also a lot of other people that do seem to have some genetic mutations that might not be familial.
Rooks: George, how have you adjusted your life? In something I read this morning it said you’re no longer tying flies.
Smith: I can’t tie flies. I can’t release fish. So I didn’t fish as much this year. When somebody will take me, of course or I’ll go. And then hunting, I can’t pull the trigger on a gun. But I have loved taking other people out, especially new hunters. So that’s what I’m doing. But now that I’m losing strength in my legs, it’s getting harder and harder to even do my favorite outdoor things. So that of course changes your perspective. The other thing is I got off some boards and dropped some projects. This last session I put 11 of my own bills in the Legislature. I think I’m pretty much done with that and I am spending a lot more time with family and friends. And that’s been the best part of this. Even Angus is coming up next Saturday to spend an afternoon with me. I joke, but everybody wants to take me to lunch, so I’m getting lots of lunches, that’s really good. But I’m spending more time with my friends, and I’ve connected with people, even schoolmates that I hadn’t heard from in 20 years. And so there’s a lot of good in terms of stepping back and letting all these things happen. Now I’m pretty well focused on family, friends and what I can do to help other people.
Rooks: You mentioned in your column that you have a harder time typing.
Smith: My daughter got me that Dragon software that you talk and it types. Now I thought, no software is ever going to understand my accent. But in 15 minutes I was up and it was working. Doesn’t get every word right but you can edit as you go along. I wish I’d gotten it years ago.
Rooks: So we’re still going to be hearing from you?
Smith: Oh yes I’m going to keep writing as long as I can. One of the newest technologies is you can look at the screen and it types what you’re thinking. I thought, oh I don’t want to go there.
This Maine Calling excerpt has been lightly edited for clarity. To listen to the full episode, click here.
This story was originally published Jan. 12, 2018 at 3:47 p.m. ET.