Disease behind ‘Ice Bucket Challenge’

57-year-old Robert Bonine shares his story with ALS

Hundreds of people across the United States have participated in the ALS ice bucket challenge, but along with raising money comes more awareness for the incurable disease.

When 57-year-old Robert Bonine was diagnosed with ALS last year some of his family and friends didn’t know what the disease was. It only affects about two people per 100,000 people, so it’s not as prevalent as cancer or diabetes, but now with the ice bucket challenge he hopes more people understand the disease and help fight the battle.

“These two hydrogen atoms zip along out into space and the other one goes you know look at me, I think I’ve been losing weight,” said Robert Bonine.

Fifty-seven year old Bonine spent most of his career as a chemistry and physics teacher at De Soto High School. However, anyone who knows him would say he could be a standup comedian…

“I like humor,” said Bonine.

But before Bonine tells the punch line to the joke, he has a few more stories to tell.

“I am a cancer survivor,” said Bonine.

At the age of 50, Bonine was diagnosed with stage three colon cancer.

“My insurance company when I turned 50 said ‘Hey, we will give you $50 to get a colonoscopy, so I did and it saved my life,” said Bonine.

After a year of radiation and chemotherapy, Bonine won his battle with cancer.

“That one was the easy one to beat,” said Bonine.

But then he was faced with a new battle.

“I noticed that I started losing breathe easy and I was losing weight faster than probably I should,” said Bonine.

“He lost 65 pounds in a little over a year with no diet change and no exercise,” said Roxanne Fox, Bonine’s significant other.

After three long months of testing, Bonine was given his diagnosis last March, amyotrophic lateral sclerosis.

“It was a shock for Robert,” said Fox.

“It’s an illness of nerves, a certain kind of nerve called the motor nerves which are nerves that go from the brain stem and spinal cord to muscles, voluntary muscles,” said Dr. Michael Leone, a neurologist at Gundersen Health System.

Along with Bonine, about 30,000 other people are living with ALS in the United States.

It’s an incurable disease but Bonine isn’t going to let that stop him or his sense of humor.

“It’s about two out of 100,000 people so if you meet me you should shake my hand,” said Bonine.

“It is what it is is his motto and he just deals with it and because of that I do too, his strength rubs off,” said Fox.

Although Bonine is about a year and a half into his disease, he still finds the positives in life.

“Last year at this time, I could walk pretty good and I could still drive, but now it’s slowly taken that away from me,” said Bonine. “Now I call it my little battles, so to take a shower is a win, to put on my clothes is a win.”

However, Bonine admits it’s hard at times.

“Some days you don’t feel like getting up, but then I go ‘Hey, what else are you going to do so let’s do something,'” said Bonine.

And for Bonine that something usually ends with a laugh so now back to the end of the joke.

“I think I’ve been losing weight and he goes “You think so, yeah? How can you tell?’ I’m positive, get it, I’m positive he lost his electron,” said Bonine.

La Crosse recently created its very own A-L-S support group. Everyone is invited to join. The group meets on the first level of the Gundersen Clinic every first Saturday of the month from 3-5 p.m.

Here is a link if you would like to donate to the ALS Association.

So far this year, the ice bucket challenge has raised more than $31 million compared to almost $2 million during the same time period last year.