Technology, age cause into life after diagnosis for ALS patients
March 20, 2016 - als
MANATEE — Since Kevin Swan was diagnosed 4 years ago with amyotrophic parallel sclerosis, he has mislaid control of many of his body. The 34 year aged relies on his mom, Julie; girlfriend, Elizabeth Perron; and a staff of part-time caretakers to assistance him get by any day.
Swan hasn’t let ALS, ordinarily famous as Lou Gehrig’s disease, take his liberty or ambition. He believes he was put on this Earth to do something great. He still envisions himself as a owner of a association with 25,000-plus employees — a prophesy he’s posterior by a nonprofit he started called A Life Story Foundation.
Through a nonprofit, Swan hopes to boost recognition of ALS and lift income to assistance find a heal for a disease. Without record and amicable media, he knows he substantially couldn’t do any of this.
Swan uses Tobii eye-gaze technology, a gaze-following microprojector that allows marred people entrance to a Internet, and a Microsoft Surface Pro tablet. Swan uses a multiple as a mobile bureau to run his foundation, creation it many easier for him to strech out to a broader ALS community.
“It’s one thing to get people to run a 5K, though that’s one day,” Swan said. “It’s another thing to rivet them on a steady basement and get them to stay active and give more.”
With Tobii and a Surface Pro tablet, Swan can send emails, twitter and control other mechanism business regulating usually his eyes. Through amicable media, Swan is means to post daily and twitter about events, fundraisers and ubiquitous issues in a PALS — Persons with ALS — community.
Swan, who grew adult in Bradenton, worked as a TV horde and writer in Chicago and New York before he was diagnosed. As a illness worsened, he changed behind to Lakewood Ranch with his mom and dad, Ken.
Swan can still speak, though when he has difficulty creation out certain words, his mom and Perron assistance with translation. The 3 essentially run a foundation, though volunteers from around a nation also assistance widespread a word about A Life Story Foundation and a events.
“Kevin felt there was space not being addressed,” Julie Swan said. “It’s removing people to unequivocally do something instead of only saying, ‘Oh, that’s awful,’ or ‘Oh, that unequivocally sucks.’ ALS isn’t incurable; it’s underfunded.”
Swan doesn’t only use a record for business. He enjoys carrying a Surface Pro for quite millennial reasons.
“Now that we have a inscription we can take selfies,” Swan said. “And we will substantially get behind on Instagram.”
Technologies like Tobii and Surface Pro concede patients with ALS to continue operative and communicating even as a illness shuts their bodies down. And amicable media provides maybe one of a many ground-breaking ways to assistance ALS patients equivocate isolation, Swan has found. Facebook has helped him widespread a word about A Life Story Foundation and bond with other PALS.
“Through a PALS community, there’s a lot of pity around amicable media of what works and what wastes your time,” Julie Swan said.
Using a amicable media apparatus like Facebook is useful to people vital with ALS for both patients and their families. Without such tools, drumming into a ALS village can be difficult. At any given time about 30,000 people in a U.S. have ALS, definition reduction than 1 percent of a U.S. race lives with it.
“People can describe to other people with a disease,” Kevin Swan said. “And it’s many easier for a mom or father to describe if they’re going by identical circumstances.”
Robert Goldstein, clamp boss of marketing, communications and growth for a ALS Therapy Development Institute, pronounced in cases like Kevin’s, record restores a ability to promulgate — and that can make a universe of disproportion in someone’s peculiarity of life.
“ALS and a lot of opposite diseases sack people of ability to communicate,” Goldstein said. “There are few things some-more tellurian than a ability to communicate.” Eye-gaze record has come a prolonged approach in a final dual decades, Goldstein noted, and he’s tender with what amicable media has finished for ALS patients.
“Facebook or Twitter instantly gave people with ALS a ability to pronounce to their whole crony bottom during once,” Goldstein said. “I consider infrequently we don’t acknowledge a extensive autonomy and leisure of communication that amicable media has supposing people with ALS. It’s being a member of a village again.”
Researchers are on a verge of building communication record that can be ingrained in a person’s brain, Goldstein said.
“Rather than relocating their eyes, they should be means to consider and have that seem on a screen,” Goldstein said. “It will make it really healthy for people.”
Tech-savvy ALS millennial
Swan’s certain opinion and fighting suggestion have helped him conduct a substructure and emanate a network, though but record many of it would be many some-more difficult.
“One of a advantages of being immature with ALS is being tech-savvy,” his mom said.
The tablet, a energy wheelchair propelled by feet controls and eye-gaze record “give me so many autonomy we wouldn’t differently have,” Kevin said.
Roger and Carol Schmidt, whose tale with ALS was chronicled in a Bradenton Herald progressing this year, are some-more removed given they don’t use Twitter, Facebook, Instagram or other amicable networking tools. Carol Schmidt also does not have a ability to use Tobii or other eye-gaze record given of preexisting prophesy problems.
After a ALS village schooled of a Schmidts’ situation, assistance for a integrate poured in. Michele Dupree, an ALS disciple formed in New Jersey, listened about a story and set a gears in suit to yield financial assistance for a couple.
A New Jersey-based ALS nonprofit, staytough.fightHARD, sponsored a $2,000 extend for a Schmidts. A neighbor in a Schmidts’ condo resolution started a fundraiser by a website YouCaring.com. So far, a account has lifted $1,801.
“There’s a lot of people who are stepping adult and doing things,” Roger Schmidt said. “The thing that we wanted to occur was that people are unprotected to it, and a other partial is that there’s no place here for ALS patients. It doesn’t need anyone to build a facility. We only need people who wish to help; that’s all it takes.”
Jim O’Neill is on staytough.fightHARD’s house of directors and is authority of a annual Valentine’s Day Plunge in New Jersey, a fundraiser identical to a Special Olympics’ Polar Plunge. O’Neill’s hermit died of ALS 9 years ago and ever since, he has worked with staytough.fightHARD and other foundations to lift income for families vital with what he calls “this foolish disease.”
“Once you’re overwhelmed by this disease, you’re in it for life,” O’Neill said. This year, a Valentine’s Plunge lifted $290,000 and cumulatively has lifted some-more than $2 million given it was started 10 years ago. The classification uses a income to assistance families with quality-of-life issues and provides grants between $1,000 and $3,000 to families opposite a country. Applicants contingency infer they have been diagnosed with ALS before they can be deliberate for a grant.
“There are dual battles: perplexing to find a heal and perplexing to take caring of people who have an incorrigible disease,” O’Neill said.
Technology and amicable media play pivotal roles in a Valentine’s Day Plunge. O’Neill pronounced Facebook helps move a thrust organisation together each year, unites a ALS village and infrequently brings in donations for his foundation.
“The ALS Facebook village is unbelievable,” O’Neill said. “Through record and Facebook and amicable media, a overdo has only turn greater.”
A Life Story Foundation’s Facebook page now has some-more than 3,800 likes. Through joining with another ALS studious on Facebook, Kevin found out about a Tobii record and a Microsoft Surface Pro. Social media also helps him foster A Life Story Foundation’s events, including one subsequent month.
From 7 p.m. to 11 p.m. Apr 16, they’ll horde Prohibition Party: a speakeasy dusk for those who can’t pronounce “easy.” The eventuality will have a jazz band, food, an open bar with Roaring ’20s cocktails and a cigar bar, as good as “back room” activities such as blackjack, roulette and craps during a Lake Club’s Grande Clubhouse in Lakewood Ranch. Anyone meddlesome in a eventuality can email questions to email@example.com or firstname.lastname@example.org.
Beyond formulation substructure events, Perron and Swan still go out to dinner, check out a Lakewood Ranch bar scene, and together they adjust to what Perron calls a “new normals” as a illness progresses.
“We still have a lot of things to do,” Perron said. “I don’t demeanour during it like there is an finish date — and Kevin doesn’t, either.”
Janelle O’Dea, Herald business reporter, can be reached during 941-745-7095. Follow her on Twitter @jayohday.