“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.”

Tom’s determination to do something good has led him to be a volunteer immigration attorney for Catholic Charities in Milwaukee, where he deals with refugees going through the citizenship process. “These people are just salt of the Earth individuals,” he says, “and that sort of keeps me alive, that and I'm now doing ALS advocacy.”

When asked where he finds hope, Tom’s quick to reply, “My caregiver,” his wife Susan. “It's a lot worse for Susan than it is for me. Because the caregiver's job is never ending,” he says. Tom can no longer tie his shoes, put on a belt, or button his clothes.  Susan has managed to find clothes with Velcro to help Tom maintain as much of his independence as possible which she believes is an important part of his well-being.

Susan is thankful for the support they receive from friends, picking Tom up weekly so he can continue to attend his men’s luncheon on Monday afternoons. “And I think people are very anxious to help in any way. His cousins, I mean just a whole raft of people have said what can we do, how can we do it? Where can we be of service,” she says. “And I think people shouldn't be afraid to say yeah, I need some assistance. I can't do this alone.”

Tom and Susan are also very active with their chapter’s support group. “I don't know that at least my input is all that valuable, but it's good to hear from other people. And for a group of people, half of whom have a fairly serious diagnosis, there's a whole lot of laughing going on in that room which helps get through until the next month,” he said.

“I think in the support group, the people that we have seen have the toughest times are the ones that are trying to just do it on their own,” says Susan. “And I think we live in a world in which the opportunity for people to care and give and share and you know, even if it's a couple hours of their time or a ride somewhere, just say yes. Just say yes. I really think that is a gift to them, as well.”

Tom’s advice to others living with ALS and their families? “Make the best of their time and don't be angry,” he says.  “Because if you don't laugh at this thing, you're going to cry with it. That doesn't accomplish anything.”