Living with ALS

"The thing that scares the hell out of me-- sorry-- the thing that scares the heck out of me-- is that you end up not being able to move with a fully functioning brain-- I just can't imagine going through that," says Dennis Leazenby.

ALS, also known as Lou Gehrigs disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. There is no cure and only one drug approved by the FDA that modestly extends survival.

"When I got diagnosed, the doctor said, 'You have ALS. You have five to six years to live at the most.' I chose not to believe it. Most people it's real fast acting. I've known people who have got it, are in wheelchairs and are gone.  I'm going on five and a half years and I'm getting around pretty good, you know?"

ALS started creeping into Dennis's life slowly- about eight years ago when he was racing dirt bikes he found it difficult to hold onto the handles. S couple of years later, while working outside, his arms went numb. Today, the disease affects Dennis's hands and arms mostly. He also has trouble with his neck and throat.

"It's the unknown. I don't know what to expect. I don't know how long I'll keep doing as well as I'm doing."

By ALS standards, Dennis is doing very well. He's able to continue working with his hands-- doing things like building the fence around his house.

"It's hard cause in my mind I can still do it. It takes me five times as long. I'll work for a day and rest for three."

Little things are tough.

"ZipLock bags are the hardest thing to open."

But he says there are some upsides.

"When you're around our friends, I have a water or something.. they open it and give it to me. I don't have to ask-- it just happens. Water... beers."

He was also able to hit an important milestone recently, one that when he was first diagnosed seemed a bit unlikely. He was able to see both of his kids graduate from high school.

"This whole deal-- it's been a blessing in that it's brought us a lot closer and it's taught my kids how to deal with stuff. After you have a conversation about you dying, you can pretty much talk about anything. No- they went through a lot of rough times. Friends and family got us through it. The whole community of Canyon helped raise our kids and I helped raise there's."

So, it seems fitting that on Sunday the community came together again to support their friend Dennis, and this ice bucket challenge movement.

"67 people dumped ice on their heads. I get videos everyday for people doing it in my name. It gets me really emotional."

Dennis says he finds himself explaining what ALS is a lot less lately. It's hard not to know a little bit more about the disease with the ice bucket videos flooding your newfeeds- he figures that's a pretty great thing.

"It's hard to see the people that get it and go so fast. I guess I feel like it's my calling and my duty to let people know about it. Cause I'm called a survivor now."

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