Battling Deadly ALS, Village Firefighter Giving Back to Foundation

At first, Dick Jacobson thought the sore calf was a running injury. The sobering truth came from a neurologist last September: amyotrophic lateral sclerosis. ALS. Lou Gehrig’s disease.

A disease of the motor neurons, ALS causes muscles to stop responding, leading to loss of function. It progresses inexorably, and almost always rapidly. In 2012, just as when its most famous patient was diagnosed in 1939, it has no known cure and virtually no treatment. Even the cause is unknown. It is eventually fatal.

So for patients like Jacobson—a nine-year Western Springs resident, father of four, husband, pet owner and local paid-on-call firefighter—and their families, an ALS diagnosis can be overwhelming. And for the Jacobsons, and many others like them, the Les Turner ALS Foundation has been a light in the dark.

“We’ve been blessed to be affiliated with Les Turner,” said Kristen Jacobson, Dick’s wife. “They’re a very dedicated, helpful resource for us. I couldn’t imagine how we'd do this without them.”

Founded in 1977, the Les Turner ALS Foundation is a Chicagoland group supporting patient services as well as research for ALS. They’ve given Dick Jacobson movement-assistance equipment—once a marathoner, he can now barely climb a flight of stairs—along with occupational therapy, clinical assistance and a wealth of resources to ease the family's lives in a tough time.

As Jacobson’s ALS progresses, the Foundation will continue to give increasing help; for his part, he is organizing Western Springs’ first-ever ALS Tag Day for the Foundation on May 11 and 12. Tag Days involve dozens of yellow-vested volunteers canvassing the streets, exchanging baseball card-like “tags” (a callback to Gehrig) for donations.

Jacobson said he expects great generosity from the charitable residents of Western Springs; he has already seen tremendous support from friends and neighbors in volunteering to help. He will be hitting the streets himself to lobby for donations, as best he can.

“There’re a lot of bad diseases; there’s a lot of organizations that deserve money—if [residents] can find it in their hearts to add this one, it helps a lot of people,” he said. “[ALS] doesn’t get a lot of funding from the pharmaceutical companies… there aren’t many of us that have it, and we don’t live that long, so we’re not a big financial gain.

“Most people will give something. People in Western Springs are very generous. I’m sure for a lot of people it’ll be change, a dollar, two dollars, and that’ll be great.”

Nine months after his diagnosis, Jacobson continues to work as a mechanical engineer and project manager, and even as a paid-on-call Western Springs firefighter, where he has been reassigned to light duty (and promoted to lieutenant.)

“[The ] are going out of their way to make things as easy for me, keep me as involved as I’m willing to be an able to be,” Jacobson said appreciatively. (He still carries his fire-department scanner and is ready to respond.) “They’re always willing to look for other things that I can still do and be involved with.”

Western Springs Fire Chief Pat Kenny has seen the effects of ALS on a family first-hand before: his brother-in-law, Bob Madden, a Glen Ellyn police sergeant, died of the disease after an eight-year fight. (Deputy Chief Gary Mayor also lost his mother to ALS.) The experience has given them perspective on understanding the struggles of ALS patients and loved ones.

“I’ve been fortunate to have worked alongside a lot of courageous people in my career, but I haven’t seen anything more courageous than ALS patients—they have to be willing to face those challenges every day, physically as well as mentally and emotionally,” Kenny said, adding that the disease certainly put into perspective any whining about sore backs or stiff ankles.

“The ability to overcome that challenge mentally is something that Dick has just done an exceptional job with… He’s such an asset to the Department.”

At this point, Dick Jacobson is still in the very early stages of his ALS, and there is little indication to how fast it will progress. The Jacobson family (including McClure brothers Arturo and Andrew, and older sisters Rachel and Michelle) faces difficult decisions, like whether to hold onto a tri-level home when stairs become more difficult for Dick each day, or how to deal with disability insurance—decisions in which the Les Turner Foundation has been instrumentally helpful.

“It’s been somewhat emotional, but a lot of things in our life are still normal,” said Jacobson, who remains affable and cheerful, dressing up his canes in gaudy stripes and joking that his condition has finally freed him from moving furniture and mowing the lawn. “But we know that’s going to change, little by little. We try to keep our spirits up. We’re fortunate that we’ve got close family, good friends."

Meanwhile, those friends and family will be among the many taking to the streets of Western Springs for a couple of days this May to help ensure that the Foundation continues to be a beacon for Chicagoland ALS patients.

“We’re benefitting from it, so we want to help now and also for the future,” said Jacobson. “Frankly, any of the research is probably too late for me, but hopefully generations coming down the road won’t have to go through the same thing.”