Elgin man is ALS patient of the year

Dan Weiler's independence has been shrinking over the last few years. It has been a difficult change for the 63-year-old Elgin lawyer but one he has no choice but to accept.

Weiler was diagnosed with ALS, which is a motor neuron disease that essentially severs the connection between the brain and the muscles. The progressive, terminal disease causes patients to lose the ability to control their own movements, including speaking, swallowing and, eventually, breathing.

The Les Turner ALS Foundation recently awarded Weiler one of two patient of the year awards for his own advocacy work and that of his family on behalf of ALS patients.

In the last three years, the family has raised about $36,000 for the foundation and Weiler has spoken at various fundraising events about his own story.

Weiler said the award is somewhat of a beginning for him.

“It started making me think, maybe I should recognize this as a challenge that I should be doing more,” Weiler said. “I haven't really formulated what this means, but with that honor goes an obligation to do something with it. I just have to think a little bit more about how I would put that into practice.”

Weiler first started experiencing symptoms of ALS in 2007, but he wasn't diagnosed until 2009. Because there is no single test that confirms an individual has the disease, Weiler had to go through a barrage of testing to rule out other illnesses before his doctors settled on ALS.

Since his diagnosis, he has slowly shifted from needing a cane to walk, to needing a walker and now needing a motorized wheelchair. For a while he could drive, but he had to give that up in March.

Weiler said he depends on his wife a lot and knows his needs are a burden on her. The changes, he said, have been a struggle for both of them.

“Being an independent person and suddenly being cast in this role of being dependent on someone, it's not easy to do that,” Weiler said.

And even harder, his symptoms are constantly evolving with the severity of his disease. “You get to a point where you feel, ‘OK this is it,' but because this is a progressive disease, then you can't do something else,” Weiler said.

The couple's Elgin townhouse has been reorganized to accommodate Weiler's needs. A new ramp helps him get in the house from outside. Whereas he used to do things in all three levels of the home, everything he uses is on the main floor now. And the bathroom got a remodel so he can fit his chair under the sink and more easily navigate the shower.

It's the simple things that most people take for granted — getting dressed, bathing — that now take Weiler much more time and energy. He has continued to work in the St. Charles law firm he helped found, Weiler and Lengle, PC, but he has scaled back his hours because it takes him so much longer to get ready in the morning.

Weiler likes his job. He said if he didn't, he'd probably take the excuse to retire, but his wife drives him to and from his office almost every day and he gives as much as he can to the practice.

“Rather than sitting home feeling sorry for myself, I think it keeps my mind active,” Weiler said.

At home, while his wife escapes to her art, Weiler sometimes plays piano or reads. Other times he continues genealogy research he started years ago. He has found evidence that his mother's family line goes all the way back to the Mayflower and links to former President John Adams. On his father's side he can trace the Weilers to the first ancestor who immigrated to the United States from Germany in 1845.

He has spent the most time on the Weiler line and plans to write out the genealogy for future generations as his next project.

In the meantime he continues seeing Dr. Teepu Siddique, a neuroscientist at Northwestern University's Feinberg School of Medicine who has led groundbreaking research into the causes of ALS.

And for as long as he can he'll keep up his membership in the Elgin Area Chamber of Commerce, the Elgin Lions Club and the Rockford Catholic Foundation.

His disease makes it hard to plan very far into the future, but as cliché as Weiler knows it sounds, he said his family truly will take it “one day at a time.”