Navigating ALS: Mass. Advocate Helps Thousands Of ‘Friends’ With The Debilitating Disease
By Lisa Mullins and Lynn Jolicoeur, October 11, 2017
Somewhere in Massachusetts, on any day of the week, a 64-year-old man with a long gray ponytail, jeans and tennis shoes is behind the wheel of a Toyota Highlander crisscrossing the state. The SUV is six months old and has already gone 38,000 miles.
The driver, Ron Hoffman, has traveled hundreds of thousands of miles on a singular mission: to help people who are reckoning with a cruel and fatal disease — amyotrophic lateral sclerosis, or ALS. The degenerative neurological condition causes muscles to waste away and can leave a person unable to move, talk and eat, and eventually unable to breathe. In most people, the brain stays sharp.
Twenty years ago, all Hoffman knew about ALS was that baseball legend Lou Gehrig had it. Now he has nearly 500 “friends” with the disease. He calls them friends even if they’ve just met.
Hoffman’s mission is to help those people navigate the complexities of living and dying with ALS, including getting the overwhelming amount of equipment they’ll need. The work might even be Hoffman’s calling, after his own brush with death long ago. At that time, someone stepped in and was there for him.
On one of the days we meet up with Hoffman, he’s driving to a brownstone in Boston’s South End — the home of Susan Kron, who has ALS, and her husband Paul Schaffrath. There’s a big black steel vertical lift outside the building. Hoffman scoped it out for Kron, so she and her wheelchair could get up and down the front steps.
Kron was a longtime magazine editor. She was diagnosed with ALS 4 1/2 years ago. When Hoffman walks into her living room, he gives her a hug. She’s wearing a long flowered blouse and cropped navy blue pants, and she’s leaned back in her wheelchair.
All around Kron’s living room are striking prints and vases and other crafts from her travels to Israel and Europe. And there’s something that looks like a crane with a sling — to help her husband or her home health aide get her in and out of bed. This is the kind of gear Hoffman finds — from shower chairs to catheters to high-tech computer systems that let people send email with their eyes — so his friends can live out their lives fully.
‘You Really Feel Like You’re A Person, Not A Disease’
Hoffman asks Kron, who is 67, how she likes the steel lift on the stairs outside.
“Isn’t it gorgeous?” Kron responds. “It’s just made such a difference. And it’s very cool looking.”
The lift lets her live at home. Kron credits all the vendors who work with Hoffman for helping her stay mobile as long as possible.
“Like the fan guy … and the stair-lift guy,” Kron says. “They’re all dedicated to helping people with ALS because of Ron. You really feel like you’re a person, not a disease, and that you’re going to be taken care of.”
Part of that caring involves the fun stuff. Kron is wearing a necklace with a pendant that appears to be a guitar pick.
“It’s Springsteen’s guitar pick,” Kron says. “I got it at the concert that Ron helped facilitate. And we met Bruce’s guitar guy, and he gave me one of his picks.”
“How many Springsteen concerts have you been to?” Hoffman asks her.
“Over 50 … which is not a lot,” Kron answers.
Getting someone backstage at a Bruce Springsteen concert is a big deal; so is tracking down the vertical lift. The role Hoffman cherishes, though, is initiating difficult conversations when people are ready.
He’s already had a tough conversation with Kron about whether — when she can no longer swallow — she’ll want a feeding tube in her stomach. Even though it would extend her life, she says no.
“For some people the feeding tube is a no-brainer. It wasn’t for me, because if I’m at that state where I’m not eating, I don’t know whether I want to stay there,” Kron explains.
“Plus, you’ve talked with your doctors,” Hoffman says to her. “You guys have really navigated all of this.”
Hoffman’s organization is called Compassionate Care ALS, or CCALS. He launched it in 2003 with just $35,000 in donations. Now it has a budget of $2.2 million.
CCALS is based in a two-room cottage in Falmouth, with a staff of seven. A few miles away, the organization has a warehouse packed with equipment for ALS families. They’re items that are rarely covered by insurance. CCALS bought them with donations and grants.
People with ALS hear about Hoffman through word of mouth or a doctor, such as Merit Cudkowicz. She’s chief of neurology at Massachusetts General Hospital.
“We refer probably 70 [percent to] 80 percent of our patients to him,” Cudkowicz says. “And we follow about 500 people. So that’s a lot of people that we refer to him … because he provides this unique care in the home that really doesn’t exist in any other state. And he’s also been emotionally supporting our patients.”
Those who can afford to pay the thousands of dollars it costs for a ramp system or stair lift to be installed at their home do pay; if they didn’t, Hoffman says, his organization would go broke. Aside from that, he doesn’t ask for a penny or even a signature. Paperwork is not his style.
“He’s fearless,” says neuroscientist Lisa Genova, who writes novels that deal with debilitating disease. Her book “Still Alice,” about Alzheimer’s disease, became a hit film. She’s about to publish a novel about someone with ALS, and she’s been watching Hoffman at work.
“With a lot of people, when you talk about these illnesses, there’s a lot of limitation … and with health insurance and managed care, it can be cumbersome to get what you need,” Genova says. “And Ron doesn’t go by any of that. … He goes around it.”
He also takes care of the caretakers.
Faith Regan lost her husband, John, to ALS in 2014. She went through what many caregivers endure when someone they love becomes immobilized as a result of the disease.
“They have [an itch] on their toe,” Regan says. “And they wake up at one in the morning, and they say to you, ‘Can you scratch my toe? Can you move my leg?’ And when you do that for a year, you’re so exhausted. And at some points you feel like, ‘I can’t take it anymore. And I’m a horrible person.’ But Ron Hoffman comes in and he says, ‘No. That’s the way ALS is. That’s what it does to families. And you’re doing the best you can. And we’re going to get through this together.’ ”
‘Someone Was Actually There For Me’
If all of this makes Ron Hoffman sound like a saint, he’d be the first to tell you he isn’t. He can be edgy and demanding with his staff. He can be tough for families to track down.
Hoffman is a complicated man who is haunted by something from his childhood. He wrote about it in his memoir, “Sacred Bullet.”
When he was growing up in Richmond, Virginia, his father was an alcoholic and frighteningly abusive to his mother.
One night, when Hoffman was 10, his father pointed a gun at his mother. Hoffman dove in front of her, and a bullet pierced his side. It lodged at the base of his spine.
Hoffman calls it a “sacred bullet,” because being shot led to a moment he considers sacred. He was on a gurney at the door to the hospital, when an orderly met him and put a hand on his shoulder.
“I just felt the warmth and love of his hand,” Hoffman recalls. “And he just looked at me and said, ‘Ronnie, I’m here.’ It was a moment that I’ve never forgotten all my life. Someone was actually there for me.”
The bullet did no lasting physical damage. But as he aged, his life became unmoored. He got into drugs and drank too much. He couldn’t make relationships or jobs last; he was, as he puts it, a “wannabe hair stylist” in Manhattan, and he ran a men’s clothing store for a time.
Hoffman’s turning point came in the mid-1990s, when he took a catering job on Cape Cod for a businessman named Gordon Heald. In the summer of 1997, Heald developed ALS and asked Hoffman to become his caretaker. So the two navigated the alien world of ALS care together.
“We were just mucking our way through, and we did it well,” Hoffman reflects.
Heald died of ALS the next year and had donations in his memory sent to Hoffman for what ultimately became CCALS. That changed Hoffman’s life. And it taught him a valuable lesson about dying, because Heald wouldn’t prepare for his own decline; he wouldn’t even decide whether to get a ventilator to help him breathe.
“Gordon made his choices by never making them,” Hoffman says. “[And] there’s nothing wrong with [that]. That’s what I’ve learned. Everyone is not going to be proactive.”
By contrast, he says, Susan Kron and her husband are consciously dealing with death. Hoffman says that’s gift.
“Susan and Paul are an example of the nurturing that I actually get from my families because they say yes … to what we’re able to bring to their table and then take another breath and [say], ‘OK, what’s next?’ ”
Asked if there’s a point at which he wonders how long he can continue taking on more “friends” when he knows he’s going to lose every one of them, Hoffman responds: “Well, this is the path that I’ve chosen, consciously or unconsciously. It’s just what I do.”
Hoffman is about to fulfill a dream. He’s having an old inn in Falmouth converted into an education and retreat center for ALS families, nurses, doctors and caregivers. It should be open next year.