Lee Shumway of Hadley works to give others a chance against a disease that is paralyzing him, ALS

  • Shumway, holding his chihuahua, Turbo, says he focuses now on getting outdoors more and visiting with friends and relatives: “At this point, I have no material wants whatsoever.” GAZETTE STAFF/ANDY CASTILLO

  • Lee Shumway of Hadley, who has ALS, spends much of his time raising money online to help find a cure for the deadly disease. GAZETTE STAFF/ANDY CASTILLO

  • Lee Shumway's weights next to his armchair, as seen Wednesday, April 11, 2018.

  • Shumway runs with his granddaughter, Peyton, at Old Orchard Beach in Maine, June 29, 2015. Contributed photo

  • In a photo from the 1990s, Shumway, who worked for UPS, holds his daughters, Amanda and Lindsey. Contributed photo

  • In the back, from left to right, Lindsey St. Laurence, Diane Shumway, Amanda Shumway. In the front, Phil St. Laurence, Lily, Lee Shumway, and Peyton. Contributed photo—

  • Lee Shumway in his old UPS uniform one month after retirement. Contributed photo—

  • Shumway, shown here with his wife, Diane Shumway and his granddaughters, Lily St. Laurence, 4, left, and Peyton St. Laurence, 5, gets joy from his family. GAZETTE STAFF/CAROL LOLLIS

  • Lee Shumway with his wife Diane Shumway and dog Turbo at their home in Hadley. —CAROL LOLLIS

  • Lee Shumway with his wife Diane Shumway and dog Turbo at their home in Hadley. —CAROL LOLLIS

  • Lee Shumway at his home in Hadley where he spends most his day. Above he works on his Ipad raising money for ALS which he was diagnosed with. —CAROL LOLLIS

Staff Writer
Monday, April 16, 2018

It started with an ankle roll as UPS driver Lee Shumway of Hadley was delivering a package.

Soon, it happened a few more times, and he began to limp. He bought a brace. An orthopedist referred him to physical therapy. But nothing helped strengthen his weakening ankle.

Fourteen days before last Christmas and 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, 60, had 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 paralysis.

The disease, which is incurable, is also indiscriminate. On average, people live between two and five years after diagnosis, Shumway says through tears during an interview at his home one morning last week. 

“It’s a quiet, creeping killer. It just starts taking away your mobility.”

His wife, Diane Shumway, gives him a hug, and they cry silently together.

As the disease progresses, muscles lose their strength and begin wasting away, he says, looking away and holding Turbo, a feisty chihuahua, tightly to his chest. “When it reaches the chest muscles, the person can no longer breathe. So they are forced to choose between an oxygen tube to help keep them alive, or suffocate to death.”

According to the ALS Association, a little over 6,000 people in the United States are diagnosed with ALS every year, or two per 100,000 people. Sixty percent are men, most between ages 40 and 70, and 93 percent are white.

Today, Shumway struggles to walk. Every morning, he lifts his weakened legs over the side of the bed and sits for 10 to 15 minutes, preparing for his next move. Then, he slowly makes his way with a walker to the couch, where he begins his day’s work — first, lifting small weights to strengthen his upper body, and then, focusing on raising money online for various ALS associations.

He has thrown himself into fundraising and activism to find a cure for ALS, through social media and personal connections as a coping mechanism, he says. At the moment he is working on the Western Massachusetts Walk to Defeat ALS, scheduled for May 12 at Look Memorial Park in Florence. He has raised $15,000 for it so far.

Adjusting to change

Shumway sinks deeply into the couch in the living room of his Rocky Hill Road home. Vitamin bottles and medication crowd an end table. A recumbent bike, which he tries to pedal for a mile every day, is on the opposite side of the room. It’s a beautiful day and sunlight pours through a window.

“At this point, I have no material wants whatsoever,” he says. “The biggest thing I miss is being able to walk on the beach with my wife, and to run around outside with my grandchildren. I ride the emotional rollercoaster. I try to bury myself into fundraising, and stay busy.”

Shumway lives in a two-decker family house in an apartment above his daughter, Lindsey St. Laurence, son-in-law, Philip St. Laurence, and grandchildren, Peyton, 5, and Lily, 4. Another daughter, Amanda Shumway, lives in Charleston, South Carolina. He remembers running from waves with Peyton a few years ago at Old Orchard Beach in Maine, a favorite vacation spot, with cold water and sand between his toes.

Those sensations are slowly becoming memories. Having lost movement in his left leg, Shumway says he’s now “standing on one leg.” Peyton and Lily don’t understand what’s happening to their grandfather. Increasingly, he is constrained to his bedroom, living room, bathroom and hallway in-between.

Shumway, who previously enjoyed good health and kept active for most of his life, calls losing mobility a “mind boggling” and “unbelievable” reality.

Over his 30 year career at UPS, 18 of which were spent in his hometown Amherst area, Shumway estimated that he delivered 1.8 million packages and drove more than 700,000 miles. In his prime, he averaged 350 packages a day, and drove 210 miles during one shift.

“I’m sad a lot, dismayed a lot, and sometimes angry. I told my wife yesterday that I just want to get up and walk around like a normal person,” Shumway says. “I’m the same person on the inside, I’m just broken on the outside.”

New priorities

The impact on Shumway’s family has been equally traumatic.

“My wife is a mess,” he says. “She tries to hide it. She thinks of me the way I used to be. We had everything laid out for retirement, when we were supposed to start living again.” He describes a cottage in Maine where they’d planned to spend summers. In retirement, Shumway also intended to restore a 1968 Ford Mustang, for which he has “boxes and boxes of parts.”

But the cottage isn’t handicapped accessible, and the mustang isn’t practical. Buying an accessible van and fixing his home to accommodate his needs with renovations like adding a stair lift and a larger bathroom are more important now. 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 an outdoor ramp and electric wheelchair, but Shumway says he’ll need to pay roughly $125,000 himself to finish the remaining upgrades, and acquire a wheelchair van.

“If I look into the future and see what could happen to me, I just can’t handle it,” he says. “I have to try to stay in the present, because when you see other patients and how the disease has affected them — if I start thinking about that, it’s just crushing.”

Instead, when he looks into the future, Shumway says he’s excited to think about getting outside more and visiting with friends. He wants to put on monthly “dine to donate” events at area restaurants. On Thursday, the Texas Roadhouse in Hadley will give 10 percent of total food purchases to Shumway’s efforts. 

Sparking compassion

By telling his story, Shumway wants others to understand the depth of the impact ALS has and to be compassionate toward those suffering from health or other problems.

The disease, he says, has changed his perspective on life, making him more compassion and appreciative of friendships. It has changed his values, too, he says.

Over the past few months, he has written a number of personal essays published online by various ALS associations’ nonprofits.

In one titled “The Other Side of the Fence,” he wrote:

“Why, with all the wealth in this country is not more of that wealth earmarked to finding cures? for real people, people with families and loved ones, who are also greatly affected by the disease?”

Shumway reflects on how he has changed:

“I feel like I’m probably a better person than I was before, in that I now see the struggles of other people whereas before I had my head buried in sand going back and forth to work.

“Treat me like a normal person. Show up. I can’t get out, so come visit me. I’ve learned that’s how the people in nursing homes must feel. A lot of times, they’re left behind and forgotten. The best thing you can do is show up and talk with them.”

Andy Castillo can be reached at acastillo@gazettenet.com.

How to connect

The Western Mass. Walk to Defeat ALS will be held May 12, at Look Memorial Park in Florence. Registration begins at 9 a.m., and the walk will step off at 11 a.m.

  For those who want to donate to Lee Shumway’s efforts, visit https://bit.ly/2GSVQbJ. He also has a GoFundMe page that can be viewed at https://bit.ly/2qt9Pur.