Couple shares story of ALS diagnosis

Young family inspired to work toward cure, accommodations for those with disease

Brian Davis and Katy McNeil began their married life as so many couples do - living in Chicago with plans to start a family one day and move to a house in the suburbs.

They met in 2012 as law school students at the University of Michigan and married in 2016. Their first daughter, Ada, arrived four years later.

When Ada was still a toddler, Brian began noticing various physical changes. He experienced difficulty swallowing and sometimes slurred his words. The first neurologist he saw in the spring of 2022 told him he suffered from anxiety. The couple continued to search for answers.

"It got progressively worse that summer. He was running out of places to go to try to figure it out," his wife, Katy McNeil said.

An emergency room visit led to a referral for Brian to see a doctor at the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern University.

"I actually saw three neurologists there," Brian said.

In October 2022, a full year after the onset of his symptoms, he was diagnosed with amyotrophic lateral sclerosis, or ALS. He was 35 years old, and he and Katy had just learned they were expecting their second child.

"Then people started taking us seriously," Katy said.

Brian and Katy traveled to Mass General in Boston, home of the well-known Sean M. Healey & AMG Center for ALS. Doctors there told them the Les Turner Clinic was a fine facility - and wouldn't require a plane ride for every visit.

The support services team at Les Turner has helped them plan home renovations, acquire equipment such as a bed lift and find the right contractor to install a lift in the garage.

"We do so much with them," Katy said. "They really help us try to find solutions. They are very solution-oriented. We have a social worker that we talk to every month. They do everything necessary to get medications and things to help around the house."

A new reality

Two weeks after the diagnosis, Katy and Brian put a call into their real estate agent. They had been looking to move out of their Chicago condo into an older home, possibly a Victorian, in the suburbs.

"We knew we were going to be changing the type of house we were looking for and we changed our search parameters," Katy said. "We have known from the start doing what we can to make things accessible and easy - in advance of when they become urgent - is the best way for us to deal with things that are coming down the pike."

At first, the symptoms didn't really interfere with the family's life. Brian and Katy traveled to Scotland and London a few weeks after the diagnosis and then took Ada to Disney World in December 2022.

"He got 20,000 steps one day and he was still very active," Katy said. "By April 2023, when I gave birth to Penny, he was using a walker. The speed at which everything has declined has been really hard."

In March of last year the couple moved into a large home in Hinsdale that Brian could navigate in his wheelchair. The village also offered an easy weekday train commute to Chicago for Katy, an attorney with Mayer Brown.

"When we were looking for places to live, this was such an inviting community and had much of what we were looking for even before his diagnosis," she said.

They have found an incredible support network in town, Katy said. They also rely on Brian's mom, who lives with them, and help from a caregiver from 9 a.m. to 3 p.m. weekdays. The muscle weakness, deterioration and paralysis make everyday tasks difficult, from eating and drinking to having a conversation.

"Literally everything," Brian said - using a software program to communicate - when asked in what ways ALS has affected his everyday life. "There is nothing that is not impacted."

Sharing their story

Brian and Katy believe it's important to talk about their experiences with others, especially in May, which is ALS Awareness Month.

"We realized very early on, I would say, that we wanted to be as open about being an ALS family as we could," Katy said.

She has found inspiration from Brian Wallach and his wife, Sandra Abrevaya. Wallach was diagnosed with ALS at age 37 when his two girls were both younger than 3. He and his wife started a nonprofit, I Am ALS, to advocate for more funding for research into curing ALS and providing more resources for the ALS community.

"I am not a political person. We don't have those particular skill sets they have, but I was so inspired by how open people in the ALS community have been to talk about their own personal struggles, things with the disease, and we wanted to do whatever we could to ensure that this disease becomes chronic and not terminal in my lifetime, if not Brian's," Katy said.

Brian noted that one in 400 will be diagnosed with ALS, which means most people will know someone who gets the disease, often referred to as Lou Gherig's disease.

"We want to do our part to advocate awareness, research and fundraising," Brian said. "We've done a good amount of fundraising. I've participated in a fair number of ALS studies."

Facing the future

Katy said she knew little about ALS before Brian's diagnosis, except that Stephen Hawking suffered from it and it was a terrible disease.

"Nothing prepares you for a terminal diagnosis like ALS and one that is so cruel, that takes away kind of everything you do or can do to enjoy life - eating, speaking, spending time with your friends, moving on your own," Katy said. "It's taken so much of Brian's energy, which has been really challenging for him. There are a lot of days he's just too tired to do anything."

Helping Ada understand that her daddy loves her even though he can't do things other daddies do also has been a challenge. So is facing a future that is uncertain.

"They don't give prognoses for ALS. Some people just stop progressing for years," Brian said.

His life span could be as long as 10 years - or as short as a year or two.

"Each individual has their own battle with the disease and how it impacts them and how their decline works," Katy said.

The diagnosis has helped the couple avoid sweating the small stuff and noticing the daily annoyances that every couple experiences.

"Now that stuff is not even worth having a second thought about," Katy said. "It's changed my outlook certainly on relationships, on what's important in life, on where to put my limited time and energy and efforts.

"It definitely puts everything into a different perspective for sure," she added.

Brian, who has not lost any cognitive abilities, is very aware of how his disease has affected his family and the fact that he won't live to see his daughters grow up.

"I felt and still feel a lot of guilt about what my wife and my mom do to take care of me. I feel terrible that I will leave them without a father and they won't remember me," he said.

"I don't think that's true," Katy told him. "They will remember you. We'll make sure they remember you."

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Pamela Lannom is editor of The Hinsdalean