Doug McConnell

Doug McConnell wears his ALS mask as he prepares to start his swim September 13, 2020, from Evanston to Chicago to raise money for ALS research. (Brian Cassella/Chicago Tribune/TNS)

CHICAGO – When Doug McConnell reaches 100 swim strokes, he thinks about his father. At 400, he thinks about his sister.

He thought about both of them this week when he swam 19,220 strokes in Lake Michigan from Evanston, Ill., to downtown Chicago to raise funds toward finding a cure for amyotrophic lateral sclerosis (ALS), a terminal disease with no cure. He lost his father in 2006 to the disease, and in 2018, his sister.

"That's always a lift, when you're cold or you're tired or your shoulders are aching or your legs are cramping," he said.

The swim was part of the group A Long Swim, which he and his sister, Ellen McConnell Blakeman, had founded, to raise funding toward a cure for ALS. Doug McConnell has completed long swims, including the English Channel.

"Swimming is where you have to use all your muscles, and an ALS patient is kind of losing theirs," he said of the neurodegenerative disease that affects nerve cells, eventually paralyzing the body.

His father lived 12 years after his diagnosis, which is considered a long time for a terminal illness with an average life expectancy of three to five years after diagnosis.

Months after his father died, his sister felt muscle weakness in her leg, a symptom of ALS. She, too, lived for 12 years before dying from the disease two years ago.

It's now McConnell's mission to meet an ALS survivor.

A Long Swim has raised funds for the Ozdinler Lab at Northwestern University Feinberg School of Medicine, which studies motor neuron degeneration that leads to diseases such as ALS.

Those raising money and awareness for this disease include former staffers for President Barack Obama and Kenilworth residents Brian Wallach and Sandra Abrevaya. The couple created I AM ALS in 2019, an effort to make something good out of Wallach's diagnosis at age 37, shortly after their second daughter's birth. Years later, they have raised money and helped push for more funding for a disease many say can and should be cured.

On Sunday, McConnell and his support team met at Lighthouse Beach in Evanston around 7:30 a.m.; he swam south and finished over seven hours later near the Feinberg School of Medicine, close to Navy Pier, at about 2:45 p.m. To replace the calories he was burning, about every 30 minutes he stopped for a blended drink from his team. Following rules established for competitive long-distance swims, he did not touch the boat following him or anyone on the boat.

Swimming in Lake Michigan brought perks, he said. The views along the lakefront were nice, with parks and buildings and, eventually, downtown. He was worried the water might be too cold but found it a pleasant 65 degrees. With the preceding week's gloomy rain, waves also were a concern. But other than some heavy chop at Montrose Point, where he "really got slapped around," it was a mix of calm and some waves.

That's not to say it was easy. Around the fourth hour, he started to think about how much nicer it might have been to take up bowling, he joked.

So instead, he thought about his dad, David McConnell. His father was a veterinarian and spoke very clinically about his diagnosis. He also remembered his sister's laugh. She had a sharp sense of humor. She was one of the first women to become a page in the U.S. Senate.

It's their memory that keeps him moving toward a cure.

"With the progress that they're making on research, I really believe it's going to happen," he said.

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