“People are Very Supportive and Very Helpful”: Tom and Susan Mountin on Living With ALS

Tom Mountin’s ALS diagnosis came as quite a shock in August 2016. “Before that, I was a tax attorney and thinking about retirement and all of a sudden, oh, I guess we’re going to accelerate this retirement,” he said.

Before his diagnosis, all Tom knew about ALS was how to spell it. “The day I was diagnosed, I downloaded the biography of Lou Gehrig because I said, ‘I want to see what I’m in for.’” He says he drew inspiration from Gehrig’s service after his diagnosis and retirement with the New York City Parole Commission helping juvenile offenders. “He was surprisingly good at this, and people thought he did a whole lot of good for people.”

“So, I said, ‘Well that’s got to be part of the key with dealing with ALS is find something different than you’ve been doing and try to do some good.’ So that’s been my approach.”

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“There’s Still A Lot of Life to Be Lived”: Steve Kowalski’s Story

Steve Kowalski was active and healthy in 2017 when he says he noticed his toes weren’t working quite right. That, coupled with a few inexplicable falls, led him to get it checked out. After a two-and-a-half-hour doctor’s visit, he was diagnosed with ALS.

“I equate it to being hit by lightning on a sunny day, because it was kind of out of the blue,” he said. 

Steve was alone in his doctor’s office when he was diagnosed. 

“I just thought it was another doctor’s visit and didn’t want to involve anyone in my family to come with me. Just thought I’d go, get checked up,” he said. The doctor’s office was close to home, and Steve walked home reflecting on the diagnosis.

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“You Got to Take Every Day with Grace and Dignity”: Liz Murray on Living with ALS

In summer 2014, as the ALS Ice Bucket Challenge was raising unprecedented awareness and funds for the fight against the disease, Liz Murray did not know that she was about to become part of the ALS community. Her diagnosis was confirmed later that year. 

Liz spent her career as a nurse in a VA clinic where she cared for numerous ALS patients over the years. She says the experience informed her suspicion that her symptoms were consistent with the disease even before her diagnosis was confirmed. 

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“You can’t give up”: Christian James on Living With ALS

When Christian James was heading to the neurologist at the University of Cincinnati Medical Center, his son, a student at UC at the time, met up with him for the appointment. 

“I thought, that’s fine. It’s not going to be that big of a deal,” he said. 

Christian says he and his wife, Kim, knew the worst-case scenario was an ALS diagnosis, which was confirmed that day in 2015. 

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Susan Hoerber’s Journey of Hope

Two days before her birthday in January 2018, Susan Hoerber was diagnosed with ALS. “I was symptomatic for about four years. I knew there was something terribly wrong,” she said. Susan first noticed her symptoms when she struggled to hold a fishing pole. “I was an avid fisherman and outdoors person,” she said. “That’s the first time I got kind of scared and I went to the neurologist.” 

Her diagnosis took several years of tests and ruling out other possible conditions. “I tried to stay active, but I kept getting worse and I would have bad falls,” she said. It is her inability to stay as physically active as she once did that frustrates her the most.

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How Joel Shamaskin Continues to Inspire and Care for Others While Fighting ALS

Joel Shamaskin spent 30 years caring for others as a primary care physician before his ALS diagnosis rushed him into retirement. Over the course of his career he had cared for some patients who had the disease, so by the time he received confirmation of his diagnosis, he and his wife Ann, who was a primary care physician as well, felt like they already knew. But ALS hasn’t taken away his desire to care for others.

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Through Sickness and Health: A Couple’s Love Perseveres in the Face of ALS

At home with Jeff and Darlene Sutherland

This article was originally published on the blog of the ALS Society of Canada on November 15, 2019, with kind thanks for their permission to reuse it.

The first thing one notices upon walking into Jeff and Darlene’s airy bungalow is the feeling of warmth and love that reaches into every corner: it’s present in the family photos that adorn the walls and the tasteful trinkets carrying messages of friendship and hope. And it’s a stark contrast to the second thing that’s evident: the soft, motorized whir of the breathing machine that keeps Jeff alive. It’s a constant reminder of the thin line between life and death – a line with which Jeff and Darlene are all too familiar.

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