Living with ALS: Cedar Rapids maestro in a quarrel of his life
September 13, 2014 - als
Ice Bucket Challenge, arriving travel lift money, recognition of incorrigible disease
As a member of a Iowa National Guard, Staff Sgt. Troy Musser warranted a nickname, “The Machine,” after he pennyless mixed Guard earthy aptness exam records.
In dual minutes, he could do 123 pushups or 95 situps.
Today he sits in a wheelchair, incompetent to pierce his legs and hardly means to pierce his arms. Musser is vital with ALS, amyotrophic parallel sclerosis.
It’s a illness that’s risen in a open demur of late, after a fundraising beginning for a ALS Association went viral. The ALS Ice Bucket Challenge filled amicable media with a clips and desirous millions of people to post videos of themselves transfer frozen H2O on their heads to lift income and recognition for ALS.
Even as a ice bucket plea has widespread awareness, there are thousands of people like Musser, fighting a depot illness with no famous means and no famous cure.
ALS, also famous as Lou Gehrig’s illness after a ball actor who died from it in 1941, is a neurodegenerative commotion that affects haughtiness cells in a mind and spinal cord. It gradually robs people of their ability to walk, talk, swallow and breathe on their own. Eventually it leads to sum stoppage and death.
Musser, 32, lives in Cedar Rapids and was diagnosed with ALS roughly 3 years ago, shortly after returning for a debate of avocation in Afghanistan. He says he’s grateful for a strangers who have contributed to a ice bucket plea — a inhabitant ALS Association reports it has lifted some-more than $100 million by a fundraiser.
The Iowa section of a ALS Association has also seen a outrageous boost in donations. Last August, before a plea went viral, they lifted roughly $68,000. This August, some-more than $225,000 has come in only from online donations. Iowa ALS Association growth manager Sarah Lettow says that’s in further to a hulk smoke-stack of checks she has sitting on her desk.
The income donated will assistance account investigate for a cure, though it also pays for ALS support groups around a state and will buy adaptive equipment, like wheelchairs, for people with ALS in Iowa. It will compensate for box managers to assistance patients and their families cope with a commotion and will assistance ALS patients with things like gas income to get to their appointments and assistance shopping medication.
“I don’t consider a lot of people comprehend there is an ALS Association here in Iowa,” Lettow says. “Donations to a internal section assistance to yield a improved peculiarity of life to Iowans vital with ALS.”
Another thing she says a lot of people don’t comprehend is that veterans like Musser are twice as expected as civilians to rise ALS.
“We don’t know why. We don’t know since anybody gets ALS,” she says. “It’s a unequivocally frightful correlation. It’s loyal for any bend of service, any debate of duty. It hits people as immature as Troy to people in their 60s or 70s.”
Musser assimilated a National Guard while still in high school. He was deployed twice, a initial time to Iraq in 2003, a second time to Afghanistan in 2010. Originally from Clarence, a city of reduction than 1,000 people easterly of Cedar Rapids, he complicated rapist probity during Loras College in Dubuque.
One of 6 siblings, Musser has had copiousness of support, from his dual brothers and 3 sisters, from a people of Clarence and from his National Guard unit, who only had a 10-year reunion of their Iraq deployment.
Now Musser and his group of supporters are operative to lift income for another ALS fundraiser — this time one that doesn’t engage ice buckets. The arriving 2014 Cedar Rapids Walk to Defeat ALS is Saturday, Sept. 20 during 2 p.m. during Veterans Memorial Stadium. People meddlesome in induction for a travel or donating can revisit Alsaiowa.org or can pointer adult during a travel that day. Check-in starts during 1 p.m.
For Musser, events like a travel and a ice bucket plea aren’t only about a income raised. He hopes people take divided a deeper bargain of a disease’s challenges. The ice bucket plea is an generally good approach to build empathy, he says.
“That initial startle of cold — when we can’t move, can’t unequivocally breathe. That’s how it is all a time for someone with ALS,” he says. “They only get it for a few seconds.”
He also wants people to know that ALS steals your body, though not your mind. His debate is starting to slur, that he says during times is some-more frustrating than losing control of his limbs.
“It seems like some people consider I’m delayed since of a approach we talk,” he says. “So they try to speak louder or slower to me. But I’m only a normal person.”
These days, Musser spends time with his family and tries to get out of a residence as most as possible. He likes attending Cedar Rapids Kernels and RoughRiders games.
His children, ages 2 and 4, are a blessing. He draws strength, he says, from, “Their smiles and their zeal to assistance me.”
He says he’s come to terms, as most as he can, with a disorder.
“I wasn’t traffic with it unequivocally good during first,” he says. “You go by a lamentation routine for your body. But now I’ve supposed what a illness is doing, and I’m perplexing my best to get recognition out and be in a open as most as we can and only be normal.”
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