This past weekend the Kansas Alpha Chapter at the University of Kansas and the ALS Association’s Keith Worthington Chapter in Kansas City sponsored Lawrence's 4th annual Walk to Defeat ALS. The following article written prior to the Walk.

Student group devotes time and energy to helping those with Lou Gehrig’s disease

The Lawrence Journal-World
By Karrey Brit

Angela Nascimento helps feed and dress 57-year-old Kent Smalter every day.

That’s because her partner of 11 years has ALS, commonly known as Lou Gehrig’s disease. It’s a neurological disease that causes progressive muscular atrophy.

“I have fallen a number of times and it’s never good,” said Smalter, a longtime Lawrence resident who was diagnosed with the disease in 2004. “My upper limbs are pretty useless at this point so I can’t catch myself. I can’t break my fall, so I come down in a hurry.”

And when he falls, Angela has to call for help because she can’t pick him up by herself. She also struggles to handle the home maintenance and yard work that he once did while working a full-time job.

“Angela has her hands full,” Smalter said. “It’s a real strain just to take care of the normal everyday household tasks.”

Students get involved

That’s where a new group of Kansas University students has stepped in and helped.

During spring break, three students did volunteer work for Extra Hands for ALS in Dallas. They spent one day doing chores for a woman with ALS.

“The trip really opened my eyes to what it was and what the disease took on and the costs and expenditures of it,” said Michael Jaquay, a senior from Salina. He learned that woman’s wheelchair cost more than the average car: $32,000.

He also found encouragement.

“The thing that amazes me the most is the people that have this life-threatening disease and how they are coping with it,” Jaquay said.

He and the other students — Brandon Hidaka of Overland Park and Jennifer Bollinger of Topeka — found the trip to be so inspiring that they formed SALSA or Students for ALS Activism at KU. Their mission is to spread awareness, raise funds and help ALS patients and their caregivers in any way possible.

Friendship grows

The three have become fast friends with the Lawrence couple. They have helped with yard work, painting and installing handicapped-friendly devices. They also like to just hang out, eat Angela’s home-cooked food and share laughs.

“A lot of times when people are diagnosed and as the disease progresses, they kind of become trapped within their house, so our main goal is to bring some of the outside world in for them,” Jaquay said.

And Smalter is grateful, especially nowadays. “

Just walking 50 feet is exhausting and there’s this risk of falling all of the time,” he said. “I am getting less and less motivated to go out of this little safety zone, and that’s less than ideal, but it comes with the territory.”

Annual fundraiser

But, there is one event that he won’t miss. It’s the annual Walk to Defeat ALS on Sunday on KU’s campus. That’s because it supports much-needed research. There’s no known cause or cure for ALS. It can strike anyone, and it does every 90 minutes in this country.

The walk also funds programs for the ALS Association’s Keith Worthington Chapter based in Kansas City. That chapter currently serves 360 people, including six in Lawrence and several in area towns.

Sally Dwyer, program director for the chapter, has been working with KU’s new SALSA group. The students volunteered to help at a recent Kansas City walk and also are helping with the Lawrence walk. Meanwhile, the chapter helped match the students with Smalter.

“To see young people helping out like that is really fantastic and really important,” Dwyer said. “They are just a great group of young people who are giving so much.”

Effects of disease

She said such volunteers are important to those suffering from ALS and their caregivers.

“It’s a very devastating disease, not only physically, psychologically, emotionally, but also financially,” she said.

Oftentimes, the ALS patient has to quit working. Then, the spouse becomes a full-time caregiver and sometimes can’t work, she said. The disease requires new equipment and adjustments to the structure of the home. The ALS Association estimates that the care costs an average $200,000 annually.

“It’s pretty incredibly expensive and pretty hard on families,” Dwyer said. “They really become financially devastated by this disease.”