After ALS diagnosis, Hadley resident takes to advocacy work, fundraising

  • Lee Shumway sits with his dog, Turbo, in his Hadley home. Staff Photo/Andy Castillo

  • Lee Shumway sits with his dog, Turbo, in his Hadley home. Shumway was diagnosed with ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s disease, in December of 2017. Staff Photo/Andy Castillo

  • Lee Shumway sits with his dog, Turbo, in his Hadley home. Staff Photo/Andy Castillo

Staff Writer
Published: 5/10/2019 1:40:31 PM

Every afternoon, Diane Shumway of Hadley goes for a walk around the block. On most days, she cries.

Her husband, Lee Shumway, has ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s disease, a progressive neurodegenerative illness that erodes nerves in the spinal cord and brain, causing gradual paralysis. For Diane Shumway, watching from the sidelines has been incredibly challenging.

“It’s difficult to watch the struggle he goes through every time he has to move — feeling helpless. It’s a really cruel disease,” she said.

On average, people with ALS live between two and five years after diagnosis, according to Shumway. He first noticed the symptoms while delivering packages for UPS, where he worked for more than 30 years. Fourteen days before Christmas in 2017, a few months shy of his retirement, after more than a year of MRIs, EMGs, blood tests and medical appointments, doctors came to one sobering conclusion: Shumway, then 60, had ALS. The disease, which is incurable, is also indiscriminate, and the toll it has taken is evident.

“The last week has been pretty rough — the weakness and trouble with my arms,” Shumway said. He was sitting one recent day in a recliner with his feisty Chihuahua, Turbo, where he can be found most days from sunrise to sunset. After his diagnosis, Shumway said he began praying more, but isn’t optimistic that much will change.

“There are so many people who are praying for miracles, and so few miracles,” he said.

Except for Sundays, when she works at Atkins Farm in Amherst, Diane Shumway said she is her husband’s primary caretaker. Every morning, she helps him slide on a board from the bed into a wheelchair. Whenever he has to move anywhere, Shumway is there to help him. Outside the house, she drives him to and from doctors appointments a few times each week.

To accommodate her husband’s condition, Shumway said they’ve had to undertake a few large renovations in their home, costing tens of thousands of dollars. They doubled the bathroom’s footprint to make it handicapped accessible, including a ceiling lift that allows him to use the toilet. Alongside the stairs, a chair-slide takes him up and down. An outside ramp leads up to the porch.

So far, a few ALS nonprofit organizations — including The ALS Association Massachusetts Chapter and Compassionate Care, a nonprofit based in Falmouth — have donated equipment like the outdoor ramp and the electric wheelchair, but Diane Shumway said they have paid for the rest.

While he doesn’t see many changes day-to-day, as the weeks and months go by, Lee Shumway said he is gradually losing strength, and with it, the ability to move his limbs. Last April, he could stand on one leg, transfer himself from one seat to another, and walk with a brace. By December, he was wheelchair-bound.

“As of August, I stopped walking. I fell, and it was dangerous,” Shumway said, noting that doctors don’t know how fast it’ll progress. “Everybody is different, in terms of where it starts, and in its progression. Some people start fast, others start slow. I’m considered ‘slow progression,’ but that doesn’t mean ‘no-progression.’ I don’t see things day to day, but as the weeks and the months go on, I notice ‘I could move my arm above my head a month ago,’ and all of a sudden, I can’t.”

On most days, Lee Shumway said he plays word games on his phone, watches sports and tries to educate people about ALS through social media outlets like Facebook. As part of the advocacy work he has taken up since his diagnosis, Shumway has dedicated himself to raising money for the annual Western Massachusetts Walk to Defeat ALS.

This year, Lee Shumway said he has raised $22,000. The benefit walk will be held on Saturday, May 18, at Look Memorial Park in Northampton, with check-in starting at 9 a.m. The walk will step off at 11 a.m.

Looking to the future, Diane Shumway said they intend to take things one day at a time and go to as many concerts as they can.

“We saw Darius Rucker a couple of times last year and Lady Antebellum. We’ve got some more planned this year, and hopefully, we’re going to be able to make it,” Diane Shumway said. “I have already bought the tickets. I’m just hoping that he will be able to get up and go.”

For more information on the Western Massachusetts Walk to Defeat ALS, or to donate to Lee Shumway’s fundraising efforts, visithttps://bit.ly/2LAeOXg.




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