Living with ALS: Cedar Rapids veteran in the fight of his life

As a member of the Iowa National Guard, Staff Sgt. Troy Musser earned the nickname, 'The Machine,' after he broke multiple Guard physical fitness test records.

In two minutes, he could do 123 pushups or 95 situps.

Today he sits in a wheelchair, unable to move his legs and barely able to move his arms. Musser is living with ALS, amyotrophic lateral sclerosis.

It's a disease that's risen in the public conscience of late, after a fundraising initiative for the ALS Association went viral. The ALS Ice Bucket Challenge filled social media with the clips and inspired millions of people to post videos of themselves dumping freezing water on their heads to raise money and awareness for ALS.

Even as the ice bucket challenge has spread awareness, there are thousands of people like Musser, fighting a terminal disease with no known cause and no known cure.

ALS, also known as Lou Gehrig's disease after the baseball player who died from it in 1941, is a neurodegenerative disorder that affects nerve cells in the brain and spinal cord. It progressively robs people of their ability to walk, talk, swallow and breathe on their own. Eventually it leads to total paralysis and death.

Musser, 32, lives in Cedar Rapids and was diagnosed with ALS almost three years ago, shortly after returning for a tour of duty in Afghanistan. He says he's thankful for the strangers who have contributed to the ice bucket challenge — the national ALS Association reports it has raised more than $100 million through the fundraiser.

The Iowa chapter of the ALS Association has also seen a huge increase in donations. Last August, before the challenge went viral, they raised almost $68,000. This August, more than $225,000 has come in just from online donations. Iowa ALS Association development manager Sarah Lettow says that's in addition to a giant stack of checks she has sitting on her desk.

The money donated will help fund research for a cure, but it also pays for ALS support groups around the state and will buy adaptive equipment, like wheelchairs, for people with ALS in Iowa. It will pay for case managers to help patients and their families cope with the disorder and will help ALS patients with things like gas money to get to their appointments and help buying medication.

'I don't think a lot of people realize there is an ALS Association here in Iowa,' Lettow says. 'Donations to our local chapter help to provide a better quality of life to Iowans living with ALS.'

Another thing she says a lot of people don't realize is that veterans like Musser are twice as likely as civilians to develop ALS.

'We don't know why. We don't know why anybody gets ALS,' she says. 'It's a very scary correlation. It's true for any branch of service, any tour of duty. It hits people as young as Troy to people in their 60s or 70s.'

Musser joined the National Guard while still in high school. He was deployed twice, the first time to Iraq in 2003, the second time to Afghanistan in 2010. Originally from Clarence, a town of less than 1,000 people east of Cedar Rapids, he studied criminal justice at Loras College in Dubuque.

One of six siblings, Musser has had plenty of support, from his two brothers and three sisters, from the people of Clarence and from his National Guard unit, who just had a 10-year reunion of their Iraq deployment.

Now Musser and his team of supporters are working to raise money for another ALS fundraiser — this time one that doesn't involve ice buckets. The upcoming 2014 Cedar Rapids Walk to Defeat ALS is Saturday, Sept. 20 at 2 p.m. at Veterans Memorial Stadium. People interested in registering for the walk or donating can visit Alsaiowa.org or can sign up at the walk that day. Check-in begins at 1 p.m.

For Musser, events like the walk and the ice bucket challenge aren't just about the money raised. He hopes people take away a deeper understanding of the disease's challenges. The ice bucket challenge is an especially good way to build empathy, he says.

'That initial shock of cold — when you can't move, can't really breathe. That's how it is all the time for someone with ALS,' he says. 'They just get it for a few seconds.'

He also wants people to understand that ALS steals your body, but not your mind. His speech is starting to slur, which he says at times is more frustrating than losing control of his limbs.

'It seems like some people think I'm slow because of the way I talk,' he says. 'So they try to talk louder or slower to me. But I'm just a normal person.'

These days, Musser spends time with his family and tries to get out of the house as much 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 eagerness to help me.'

He says he's come to terms, as much as he can, with the disorder.

'I wasn't dealing with it very well at first,' he says. 'You go through a grieving process for your body. But now I've accepted what the disease is doing, and I'm trying my best to get awareness out and be in the public as much as I can and just be normal.'

How you can help