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Living with ALS: The hard times and the hope

 “The bathroom is bigger and I extended the bedroom. I made the pocket door by gluing two regular doors together.”

 Scott Hall doesn’t hesitate to show off his latest project. The large addition adds much needed square footage to his Eugene, Oregon home. Hall is no stranger to home improvement projects and this one, like  others he’s completed over the years, is the result of his own design and is being done with the help of contractors and friends.

 “I knew exactly what I wanted,” Hall says as he navigates the new space, filled with his bed, equipment and computer. The computer is one of the ways he connects with his community- keeping file after file of  letters, along with pictures of all the fish he’s caught.

 When Hall, a former Lane Community College IT technician, envisioned his retirement, he knew it would include a few projects. But this isn’t the retirement he imagined.

 Instead of enjoying his remodel, it’s a source of stress. And rather than ocean fishing and spending quality time with his daughter and granddaughter, he spends his days facing a battle he knows he’s losing.

 “It’s hard living every day facing death.”

Hall has ALS, a degenerative neuromuscular disease that’s slowly stealing his ability to walk, talk, eat and do most anything.

“I feel ripped off. It makes me mad that this is my retirement.”

Hall first noticed something wrong in April, 2015 when he developed a limp. A year later, he received his diagnosis. Now, the man who family describes as a workaholic and always on the go, is confined to a wheelchair. The remodel he shows to visitors is part of an effort to make his home wheelchair accessible and provide a shower Hall can navigate with his dwindling physical abilities.

“This is one of the worst diseases ever. With cancer, you either die from it or they cure you. With ALS, you live with it two years, four years, six years, however long. You see everything happening and you know what’s going on, but there’s nothing you can do for it.”

Hall and his daughter, Catherine Brummett, are quick to share the realities of the disease. Catherine, her husband and their two children moved into Hall’s home a few years ago. She’s now both daughter and caregiver, mother and nurse.  

“It’s been devastating to see just how far downhill he’s gone. Losing his independence has been his biggest struggle. His brain is still totally functioning, so to be able to relay everything that’s going on in his head to multiple different people, to doctors, to builders, to me- it’s just very stressful for him.”

While Hall is the patient, the disease takes its toll on the whole family.

“I’m not even going to sugar coat it. We’re just to the point where I try to keep it together for everybody,” says Brummett, “but we're all just falling apart at times.”

The realities of ALS are startling and heartbreaking. According to the Muscular Dystrophy Association, which leads the charge in finding a cause and cure, someone is diagnosed with ALS every 90 minutes. The average life expectancy is three to five years after diagnosis.

The statistics don’t reveal how difficult living with a deadly disease is. Hall has approximately 20 appointments a month, has fallen more than 50 times and struggles to eat without choking.

“There’s a light at the end of the tunnel and it’s a train,” says Hall as he dabs at his eyes. “It’s hard to be Pollyanna. It’s real. At least I have a family- it would be worse without Catherine.”

Brummett is grateful for the time, too. She knows she’s lucky to spend her days with her father, watching her two-year-old daughter, Brielle, ride in his chair and make him laugh. Still, she feels as if ALS is stealing more than her father’s ability to function- it’s also stealing the kind of moments other children have with their parents.

“I feel guilty for being so stressed out. We don’t get to go to the beach and have fun. A lot of times, people are like, ‘Oh, use this time to bond.’ But when you’re in survival mode, you just don’t have time for that. So it’s definitely not rainbows and unicorns.”

Despite the struggles and frustrations, the family has found ways to bring joy into their lives. Often, it’s moments of genuine human connection that make the biggest difference. Hall will celebrate 19 years sober in October and credits AA, along with ALS support groups, with helping him come to terms with his disease.

“They help me stay positive.”

Brummett finds comfort in daily trips to her local Dutch Bros Coffee location.

“I find joy in something and I go to it. Dutch Bros is so happy and friendly and uplifting- they’ll talk to me. It’s nice to get that personal interaction outside my house and see those smiles. It changes my mindset a little bit.”

The daily trip means even more each Drink One for Dane day. The annual fundraiser began in 2007 in honor of Dutch Bros co-founder, Dane Boersma, who lost his battle with ALS in 2009. Hall’s family has attended for several years, contributed to the nearly $5 million raised since Drink One for Dane began and credits the fundraiser for helping give them hope.  

“My hope, for all of us, is to find a cure soon.” says Hall as he looks at his family. “ALS is a fixable problem. We need more money for research. It’s underfunded because it’s a very complex disease.”

Brummett agrees, “We pray every day for a cure. We raise money and attend ALS and MDA related events. We do what we can.”

If you ask Hall to describe living with ALS, he’ll compare himself to Sisyphus, the Greek king doomed to push a boulder up a mountain for all eternity.

“I want to thank everybody because when you face stuff everyday it gets old. They made Sisyphus push the boulder up the hill every day. That’s what ALS is like.”

Despite the struggle, Hall isn’t giving up. He hopes his boulder, his fight with ALS, is creating a path up the mountain for others behind him.

“It’s what I live with every day, but I’m fighting. I’m fighting to stay alive as long as I can.”

And Brummett says she and her family will be there with her father every step of the way.

“We’re family. We’ll be here through the end.”