Fargo man living with ALS calls spread of ice bucket challenges 'phenomenal'
FARGO - If you want to warm Mike Cameron's heart, do an Ice Bucket Challenge. Three years ago, the 60-year-old ran five miles a day and enjoyed 100 rounds of golf a year. Today, the south Fargo man must tool around his home in a motorized wheelch...
FARGO – If you want to warm Mike Cameron’s heart, do an Ice Bucket Challenge.
Three years ago, the 60-year-old ran five miles a day and enjoyed 100 rounds of golf a year.
Today, the south Fargo man must tool around his home in a motorized wheelchair due to weakness caused by amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.
Cameron is awed by the money raised to fight the neuromuscular disease through the popular but bone-chilling online video challenges – $31.5 million for the national ALS Association in three weeks.
“It’s been phenomenal how it’s spread,” Cameron said.
The ice bucket challenge got personal for Cameron when he recently found himself the subject of a dedication.
The granddaughter of some of his friends dedicated her impromptu ice-water shower to him on Facebook.
“She named off a bunch of other names to do it and she dumped it over her head screaming and hollering. And then I got everybody she mentioned,” dedicating their challenges to him.
“I was absolutely knocked off my wheelchair. I mean, it was so cool,” Cameron said.
“It’s just been pretty phenomenal.”
‘All over the place’
Jennifer Hjelle, the executive director of the ALS Association’s Minnesota/North Dakota/South Dakota chapter, said the challenges are going on “pretty much all over the place.
“What we do know is that we’ve seen over a 100 percent increase in the number of dollars coming in the door,” Hjelle said Wednesday. Many of those dollars are coming from new donors.
Challenges are popping up all over the Fargo-Moorhead area.
Most challenges consist of one or two people getting taped as they have a bucket of icy water dumped on them.
The videos, and the participants’ challenges to others to join, are then posted online on sites like Facebook, Twitter, YouTube and Instagram.
But some challenges can get elaborate. Among those in F-M Wednesday:
- At the Fargo headquarters of General Equipment & Supplies, 20 to 25 employees raised funds by getting ice water dumped on them from the bucket of a Komatsu loader. “It was funny. The loader operator started it slow, then he just did it in two big dumps. People were screaming. It was pretty funny,” said company spokeswoman Amanda McKinnon.
- Brian Stavenger, president of the Moorhead Youth Hockey Board, was drenched with a pile of wet ice rink shavings straight from a Zamboni machine.
- Fifty to 60 faculty, staff and administrators at the Moorhead campus of Minnesota State Community and Technical College had water dumped on them by two front-end loaders.
In aggregate, the funds raised have been phenomenal. In a similar three-week period last summer, ALSA raised $1.9 million. This year, it’s $31.5 million as of Wednesday.
Beyond existing donors, the funds came from 637,527 new donors to the ALSA, the group said.
“A huge thank-you to the number of people doing the challenges and doing the donations,” Hjelle said.
The money raised by the challenges and other donations is funneled by the ALSA into research for a cure, care for those stricken and to lobby the federal government for more support in both areas.
Awareness a boon
Hjelle said the awareness the challenges bring is a huge bonus. The population of those who are diagnosed with ALS is small. About 5,600 people are diagnosed annually, but they are profoundly affected, she said.
ALS was first diagnosed in 1869 by French neurologist Jean-Martin Charcot.
It wasn’t until 1939 that famed Yankees baseball player Lou Gehrig brought national and international attention to the disease when it ended his career.
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.
The disease progressively kills motor neurons that help the brain control muscle movement.
With voluntary muscle action progressively lost, patients in later stages of the disease may become totally paralyzed, the ALSA said.
Most commonly, ALS strikes people between the ages of 40 and 70. As many as 30,000 Americans have the disease at any given time.
Losses slow, steady
For much of his working life, Cameron was a special agent with the U.S. Treasury, working out of Bismarck.
He was an avid runner, but he first noticed something wrong in 2011.
“I would trip once in a while. I thought I was just a klutz,” he said.
It progressed to the point where he thought his right knee was the problem. So he quit running and just worked out at the YMCA.
But as he played golf, “I was finding myself, eventually, unable to keep up with the group I was golfing with.”
In late summer 2012, a therapist told him his left foot was dropping and losing strength.
After visits to other doctors, he finally went in January 2013 to be examined by neurologists at the University of Minnesota Hospital. He was diagnosed with ALS.
He said before then, he had a clue of what he was facing, but “it doesn’t really hit you until the doctor says that’s what it is.”
On Tuesday, the ALSA delivered a hospital bed, a lift to pick him up when he falls, and a seat to sit on in the shower.
“You call and they deliver,” Cameron said. “They do that because of the funding.”
“There is no cure. All it takes is money to fund research. And maybe someday …” he said, his voice trailing off.
The progression of the disease has been slow and steady for Cameron. He first lost strength in his left foot, then his left hand, then his right foot. Now he’s losing the ability to use his right hand.
“They tell you when you’re diagnosed that the average life expectancy is two to five years. But I met someone just recently who has lived 10 years.
He hasn’t given up activity easily.
Last year, he played golf three or four times before he had to quit.
He didn’t give up the Y until May, when it finally became too tough to get in and out of the facility.
But Cameron’s determined to do his own ice bucket challenge
“My grandsons will be here next week and we’re going to do it. We’re going to pull it off,” he said.
“What the heck. If the rest of the world can, why can’t I?”
How to donate
You can donate to the ALS Association on the organization’s website, www.alsa.org
Symptoms of ALS
The onset of ALS may have symptoms so slight they are often overlooked. The course of the disease may include:
- Muscle weakness in one or more of the following: hands, arms, legs or muscles of speech, swallowing or breathing.
- Twitching and cramping of muscles, especially in the hands and feet.
- Impaired use of the arms and legs.
- “Thick speech” and difficulty in projecting the voice.
- In more advanced stages, shortness of breath and difficulty in breathing and swallowing.
- The initial stages vary: One person may trip over carpet edges, another may have trouble lifting and a third person may have slurred speech.
- The rate at which the disease progresses also varies. The mean survival time is three to five years, though some people live five or 10 years or more. In a small number of people, ALS may halt its progression.
- Generally progressive muscle weakness and paralysis are universally experienced.
- Muscle weakness is a hallmark early sign in about 60 percent of patients.
- The hands and the feet may be affected first, causing difficulty in lifting, walking or using the hands for daily activities, such as dressing, washing and buttoning clothes.
- As the weakening and paralysis continues to spread to the trunk of the body, the disease eventually affects speech, swallowing, chewing and breathing. When the breathing muscles are affected, ultimately the patient will need a permanent ventilator support to survive.
- A patient’s senses of sight, touch, hearing, taste and smell are not affected. For many people, the muscles of the eyes and bladder are generally not affected.
Source: ALS Association
Facts about ALS
- Amyotrophic lateral sclerosis is not contagious.
- It is estimated that ALS is responsible for nearly two deaths per 100,000 people a year.
- About 5,600 people in the U.S. are diagnosed with ALS each year. It is estimated that as many as 30,000 Americans may have the disease at any given time.
- The life expectancy of an ALS patient averages about two to five years from the time of diagnosis. But the disease is variable.
- About 20 percent of people with ALS live five years or more and up to 10 percent will survive more than 10 years. About 5 percent will live 20 years. There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed.
- ALS occurs worldwide with no racial, ethnic or socioeconomic boundaries.
- The onset of ALS is insidious, with muscle weakness or stiffness as early symptoms. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follows.
- Riluzole, the first treatment to alter the course of ALS, was approved by the FDA in late 1995. The antiglutamate drug prolongs the life of people with ALS by at least a few months. Studies suggest Riluzole also slows the progress of ALS.
Source: ALS Association