Andy Scott says ALS is “relentless.”
A few hours before I met Andy Scott, I was filling out a medical form. “Have you or have you ever had...?” This question was followed by a list of the many things that can go wrong with a human being. And I thought as I checked “no” to everything, how “no” can change to “yes” in a heartbeat.
This is what happened to Andy Scott, a big, handsome man, with gray-white hair and a gray-white mustache and kind blue eyes. A physical therapist, his strength and his size made it easier for him to help people. That’s what he’s done his whole life. Help people.
Now he’s the one being helped.
Last September, he was diagnosed with amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig’s disease. He suspected in June. A muscle in his left shoulder wouldn’t stop twitching. He’d worked with patients who had ALS. He knew the symptoms. He had tests, X-rays, and an MRI. And never said a word to his wife. “I didn’t want to worry her.” Finally, in August, he told her. “We’ve got to go to this test. I think I have a progressive neuromuscular disease.”
Six months later he sits in a wheelchair in the kitchen of his Norwell home. His head droops, his body needs the chair to keep him upright, his voice is weak. A personal aide has just showered and dressed him.
The disease is progressing quickly.
He says he thought sometimes, because of his job, about “stuff I could contend with. Losing a limb. Having a stroke. Being in a wheelchair. The one disease I always said I couldn’t handle is ALS. ”
But he is handling it.
In February, his wife, Sue, fell and broke her leg. She’s philosophical about this. She said she hated leaving Andy to go to work and now she is home with him. She gets around the house on a scooter. He gets around with the help of his kids — they have four — family, and friends.
There’s a new wooden ramp that leads from the front door to the driveway. “The son of a friend of ours came and put it in two weeks ago.”
There’s a hospital bed and a chair lift and the power wheelchair he sits in, all provided by Compassionate Care ALS. Ron Hoffman, Compassionate Care’s founder, “had my back from day one,” says Andy. “He was a personal care attendant for a gentleman with ALS, and helping people with ALS has been his life’s mission since.”
There’s a fund set up to help the Scotts with the growing cost of home care: www.gofundme.com/Andylivesstrong.
And there will be a fund-raiser on April 11, at the Weymouth Elks from 7 to 11 p.m., sponsored by Norwell VNA and Hospice, where Andy worked for 14 years. (To purchase tickets, call Bernadette Ward at 781-610-1413.)
Andy is looking forward to the fund-raiser. “I am overwhelmed by the kindness and generosity of people. I want to say thank you.”
ALS takes something away from Andy every day. Words. Mobility. He calls the disease “relentless. It never gives you pause. I wouldn’t wish it on my worst enemy.”
He wants to die at home. He doesn’t want to be intubated. He doesn’t want a feeding tube. “I’m under no illusions. I know what’s coming.”
But he, too, is philosophical. “I’m frustrated with the disease and angry at the situation, but I’m not angry with anyone. I’m 60. I’ve had a chance to have a family and a profession. Someone in his 20s gets this? That’s not fair.”
His sister, Kathy, who lives in Lexington, says that all her life her brother has taught her things, like the best way to shovel the driveway and cut the grass. “Now he’s teaching us resilience and acceptance and optimism.”
Andy says: “I loved my job and I know I made a difference. But when the shoe is on the other foot?”
He’s quiet for a second.
And then he lifts his head as high as he is able and says, “We will struggle on.”
Beverly Beckham lives in Canton. She can be reached at firstname.lastname@example.org.