Technology, age factor into life after diagnosis for ALS patients

MANATEE -- Since Kevin Swan was diagnosed four years ago with amyotrophic lateral sclerosis, he has lost control of most of his body. The 34-year-old relies on his mom, Julie; girlfriend, Elizabeth Perron; and a staff of part-time caretakers to help him get through each day.

Swan hasn't let ALS, commonly known as Lou Gehrig's disease, steal his autonomy or ambition. He believes he was put on this Earth to do something great. He still envisions himself as the founder of a company with 25,000-plus employees -- a vision he's pursuing through a nonprofit he started called A Life Story Foundation.

Through the nonprofit, Swan hopes to increase awareness of ALS and raise money to help find a cure for the disease. Without technology and social media, he knows he probably couldn't do any of this.

Swan uses Tobii eye-gaze technology, a gaze-following microprojector that allows impaired people access to the Internet, and a Microsoft Surface Pro tablet. Swan uses the combination as a mobile office to run his foundation, making it much easier for him to reach out to the broader ALS community.

"It's one thing to get people to run a 5K, but that's one day," Swan said. "It's another thing to engage them on a repeated basis and get them to stay active and give more."

With Tobii and the Surface Pro tablet, Swan can send emails, tweet and conduct other computer business using only his eyes. Through social media, Swan is able to post daily and tweet about events, fundraisers and general issues in the PALS -- Persons with ALS -- community.

Swan, who grew up in Bradenton, worked as a TV host and producer in Chicago and New York before he was diagnosed. As the disease worsened, he moved back to Lakewood Ranch with his mom and dad, Ken.

Swan can still speak, but when he has trouble making out certain words, his mom and Perron help with translation. The three primarily run the foundation, but volunteers from around the country also help spread the word about A Life Story Foundation and its events.

"Kevin felt there was space not being addressed," Julie Swan said. "It's getting people to really do something instead of just saying, 'Oh, that's awful,' or 'Oh, that really sucks.' ALS isn't incurable; it's underfunded."

Swan doesn't just use the technology for business. He enjoys having the Surface Pro for purely millennial reasons.

"Now that I have the tablet I can take selfies," Swan said. "And I will probably get back on Instagram."

Ground-breaking technology

Technologies like Tobii and Surface Pro allow patients with ALS to continue working and communicating even as the disease shuts their bodies down. And social media provides perhaps one of the most ground-breaking ways to help ALS patients avoid isolation, Swan has found. Facebook has helped him spread the word about A Life Story Foundation and connect with other PALS.

"Through the PALS community, there's a lot of sharing via social media of what works and what wastes your time," Julie Swan said.

Using a social media tool like Facebook is invaluable to people living with ALS for both patients and their families. Without such tools, tapping into the ALS community can be difficult. At any given time about 30,000 people in the U.S. have ALS, meaning less than 1 percent of the U.S. population lives with it.

"People can relate to other people with the disease," Kevin Swan said. "And it's much easier for a mother or father to relate if they're going through similar circumstances."

Robert Goldstein, vice president of marketing, communications and development for the ALS Therapy Development Institute, said in cases like Kevin's, technology restores the ability to communicate -- and that can make a world of difference in someone's quality of life.

"ALS and a lot of different diseases rob people of ability to communicate," Goldstein said. "There are few things more human than the ability to communicate." Eye-gaze technology has come a long way in the last two decades, Goldstein noted, and he's impressed with what social media has done for ALS patients.

"Facebook or Twitter instantaneously gave people with ALS the ability to talk to their entire friend base at once," Goldstein said. "I think sometimes we don't acknowledge the tremendous independence and freedom of communication that social media has provided people with ALS. It's being a member of the community again."

Researchers are on the verge of developing communication technology that can be implanted in a person's brain, Goldstein said.

"Rather than moving their eyes, they should be able to think and have that appear on the screen," Goldstein said. "It will make it very natural for people."

Tech-savvy ALS millennial

Swan's positive attitude and fighting spirit have helped him manage the foundation and create a network, but without technology most of it would be much more difficult.

"One of the advantages of being young with ALS is being tech-savvy," his mom said.

The tablet, a power wheelchair propelled by foot controls and eye-gaze technology "give me so much independence I wouldn't otherwise have," Kevin said.

Roger and Carol Schmidt, whose saga with ALS was chronicled in the Bradenton Herald earlier this year, are more isolated because they don't use Twitter, Facebook, Instagram or other social networking tools. Carol Schmidt also does not have the ability to use Tobii or other eye-gaze technology because of preexisting vision problems.

After the ALS community learned of the Schmidts' situation, help for the couple poured in. Michele Dupree, an ALS advocate based in New Jersey, heard about the story and set the gears in motion to provide financial assistance for the couple.

A New Jersey-based ALS nonprofit, staytough.fightHARD, sponsored a $2,000 grant for the Schmidts. A neighbor in the Schmidts' condo subdivision started a fundraiser through the website YouCaring.com. So far, the fund has raised $1,801.

"There's a lot of people who are stepping up and doing things," Roger Schmidt said. "The thing that I wanted to happen was that people are exposed to it, and the other part is that there's no place here for ALS patients. It doesn't require anyone to build a facility. We just need people who want to help; that's all it takes."

Jim O'Neill is on staytough.fightHARD's board of directors and is chairman of the annual Valentine's Day Plunge in New Jersey, a fundraiser similar to the Special Olympics' Polar Plunge. O'Neill's brother died of ALS nine years ago and ever since, he has worked with staytough.fightHARD and other foundations to raise money for families living with what he calls "this stupid disease."

"Once you're touched by this disease, you're in it for life," O'Neill said. This year, the Valentine's Plunge raised $290,000 and cumulatively has raised more than $2 million since it was started 10 years ago. The organization uses the money to help families with quality-of-life issues and provides grants between $1,000 and $3,000 to families across the country. Applicants must prove they have been diagnosed with ALS before they can be considered for a grant.

"There are two battles: trying to find a cure and trying to take care of people who have an incurable disease," O'Neill said.

Technology and social media play key roles in the Valentine's Day Plunge. O'Neill said Facebook helps bring the plunge group together every year, unites the ALS community and sometimes brings in donations for his foundation.

"The ALS Facebook community is unbelievable," O'Neill said. "Through technology and Facebook and social media, our outreach has just become greater."

A Life Story Foundation's Facebook page currently has more than 3,800 likes. Through connecting with another ALS patient on Facebook, Kevin found out about the Tobii technology and the Microsoft Surface Pro. Social media also helps him promote A Life Story Foundation's events, including one next month.

From 7 p.m. to 11 p.m. April 16, they'll host Prohibition Party: a speakeasy evening for those who can't speak "easy." The event will have a jazz band, food, an open bar with Roaring '20s cocktails and a cigar bar, as well as "back room" activities such as blackjack, roulette and craps at the Lake Club's Grande Clubhouse in Lakewood Ranch. Anyone interested in the event can email questions to kevinswan@alsfteam.org or jswan@alsfteam.org.

Beyond planning foundation events, Perron and Swan still go out to dinner, check out the Lakewood Ranch bar scene, and together they adjust to what Perron calls the "new normals" as the disease progresses.

"We still have a lot of things to do," Perron said. "I don't look at it like there is an end date -- and Kevin doesn't, either."

Janelle O'Dea, Herald business reporter, can be reached at 941-745-7095. Follow her on Twitter @jayohday.

This story was originally published March 19, 2016 at 11:20 PM with the headline "Technology, age factor into life after diagnosis for ALS patients ."