Before the disease struck, Mike Deeley was all about being an athlete. A former semi-pro football player and accomplished powerlifter, Deeley spent a decade on the pitch with the local Roses Rugby team through 2016.
“Since I was a teenager, I’ve always done something athletic. It’s ingrained in me,” Deeley said. “I’ve always been in the gym. That’s part of who I am, what I am.”
It’s no surprise then how Deeley has attacked life since it threw him a curveball on Dec. 15, 2016, six days before his 47th birthday. It’s then he was diagnosed with amyotrophic lateral sclerosis, or ALS.
“You got to break yourself down to a point where you don’t think you can keep on going,” he said. “And then figure out mentally that you can.”
It’s why he says he doesn’t “let the disease dictate how I live my life.”
For instance, the disease has taken away Deeley’s career as a computer engineer in which he previously worked in information technology for the Pennsylvania Department of Transportation.
But he fills that time now as a volunteer for the ALS Association Greater Philadelphia Chapter, meeting with legislators in Washington, D.C., and Harrisburg, pushing for more funding not only for research of the disease but also for assistance for those stricken by the disease.
Deeley, a Warwick High School alum, detailed those efforts in a LNP In The Spotlight Q&A back in December.
ALS made headlines with the Ice Bucket Challenges that became popular five summers ago, which raised $115 million by 2016, according to a report in the New York Times.
Also referred to as Lou Gehrig’s disease, ALS involves the progressive degeneration of the motor neurons, where the ability of the brain to initiate and control muscle movement is lost, eventually leading to losing the ability to speak, eat, move and breathe, according to ALS Association website.
“It’s a gradual onset of paralysis,” Deeley said.
Roughly 30,000 people currently have the disease, with more than 5,600 newly diagnosed each year. The average life expectancy of a person with ALS is two to five years from the time of diagnosis. Though the rate of decline of a person with ALS often varies.
“It’s all so different for every single person,” Deeley said. “So it’s hard to define a path.”
Deeley’s path took a turn two months ago, when he begrudgingly gave up a walker for a motorized electric wheelchair to which he’s now confined. It’s a circumstance he knew would come eventually, but one he’d been attempting to keep at bay.
“I was walking without a cane longer than most people (with the disease) would,” Deeley said. “I was walking with a cane longer than most people would. I was walking with a walker longer than most people would be able to.”
“He wants to challenge himself to maintain the highest level of physical independence he can do,” said Adam Hawk, a former Roses’ teammate of Deeley’s. “Just seeing him fight to maintain that physicality and challenge himself ... it’s inspiring. I think about the little things that happen in my life, then I look at Deeley and he’s got the best attitude.”
That doesn’t mean Deeley, 49, hasn’t had dark days. The hardest part of the last few months, Deeley said, “It’s more than just this chair.”
“The chair is an obvious. It’s the overall breakdown of my body. It’s not being able to use my hands. Hands and legs both getting weaker,’’ he said. “It’s approaching a point of needing somebody to do just about everything.”
A father to a 27-year-old daughter from a previous marriage, Deeley lives in a two-story West Hempfield Township home with his wife and 13-year-old stepson. A first-floor bedroom was recently constructed as an addition to the side of the home, along with a handicap-accessible bathroom.
Automatic door- and cabinet-openers have also been installed, aiding Deeley as his ability to grip objects declines.
“I need help getting toothpaste out of the tube,” he said. “But I can brush using an electric toothbrush.”
A small ramp has replaced steps that go from the home into a now-empty garage where Deeley previously spent countless hours tinkering on a 1971 brown Corvette before he lost the ability to drive. He has given the car to a friend.
He gets around now in a modified van, sometimes driven by his father, Fred Deeley, a 71-year-old retired truck driver who takes his son to medical checkups or out to lunch at their favorite restaurants.
Fortunately for Mike Deeley, who was an aviation electrician in the Navy from 1988 to 1992, all of his medical care has been covered by the Veterans’ Affairs Office.
“But I advocate for the people who are not in my situation,” Deeley said. “I know there are others who are not so lucky.”
Raising funds, awareness
This Saturday, the Roses Rugby club is hosting a golf tournament at Highlands of Donegal Golf Course in Mount Joy. This is the fourth year the club is hosting the event.
Each of the last two years, the club split the proceeds of the event with the ALS Association, giving the group roughly $3,000 each year. This year, all the proceeds raised at the event will go to the ALS Association. Deeley is hoping the event raises more than $6,000.
While foursomes for the event are already booked full, anyone interested in stopping by to make a donation can do so from 7 a.m. to 1 p.m.
Donations can also be made online by clicking here.
“There’s only 30,000 people listed in the country who have this disease,” he said. “But that’s such an erroneous number because that’s the number of people who have it, not the total number of people who have had it. Every 90 minutes somebody gets the disease and every 90 minutes somebody dies from it.”