GREENFIELD — The symptoms came on suddenly — the memory loss, the overwhelming vertigo that left him housebound.
Jim Matthews already knew what it meant to struggle with activities most people take for granted. The multiple sclerosis diagnosis about a year ago compounded the nerve and muscle disorder the Greenfield resident had battled his whole life. He already depended on a wheelchair to get around but had built a life that emphasized what he could do — not what he couldn’t.
But this new illness and the symptoms it wrought — including a vision disorder — caused uncontrollable eye issues, robbing him briefly of his ability to read and permanently of his driver’s license. He stepped down as leader of a nonprofit he and his wife worked together to create. Facing the changes that lay ahead, Matthews feared losing the one thing he’d maintained despite a lifetime of challenges — his independence.
But those who know and love him, who have seen the impact he’s had on the community through his volunteerism and nonprofit work over the years, weren’t about to let that happen. They talked amongst themselves, made note of the activities that now might require a helping hand for Matthews to do. And they decided to make them happen.
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Common cause
Matthews has lived with Charcot-Marie-Tooth, a group of disorders that affects nerves in the arms and legs, for as long as he can remember. He was never able to run and play the way other kids did. He found things he loved anyway — a career as a licensed counselor, a 30-year marriage, bird-watching and volunteering with organizations that include Bentley’s Buddies and Friends, a nonprofit that pairs reluctant readers with canine listeners.
With his new diagnosis, all that felt out of reach.
“When I lost my ability to drive, I thought I was done,” he remembered.
But Bentley’s Buddies founder Nickie Scott knew just how important it is for people with multiple sclerosis to keep fighting, to keep active even as the disease progresses.
She knew Matthews’ struggle — it’s one she shares.
“I have MS, and I know you can’t ever give up,” she said. “When he told me, I said, ‘Oh, golly, he can’t just sit home.’”
Fellow Bentley’s Buddies volunteers Meg and Paul Niehaus worked in the organization’s office, and Scott asked if they’d be willing to team up with Matthews, who also serves on the organization’s board. The couple stepped up to take Matthews to his weekly appointments at Weston Elementary School.
They help Matthews and his 12-year-old beagle, Bentley, into a wheelchair-accessible van, and drive him to the school, where first-graders read to Bentley and other furry, nonjudgmental listeners.
Meg Niehaus, a retired teacher, and Matthews look forward to the visits each week, talking about the kids and how they’ll tailor the reading sessions to their needs, Paul Niehaus said.
Matthews is just thankful he’s still able to participate, he said. Because of the eye condition he was struggling with, he hadn’t been able to read for nearly five months.
Medication changes and a new pair of glasses helped get the condition under control, he said.
Scott said she knows how much Matthews loves spending time with the first-graders every week, and what’s more, he does a great job of getting them to engage with what they’re reading.
She felt like she had to find a way to keep him involved in the program, even if it was just taking work to him at his home to keep his mind busy, she said.
It was a shock to hear her board member was diagnosed with the same disease she’d battled for 22 years, but Scott hoped she could be an inspiration to him.
“Even though the disease is taking a different path for each of us, we can still help each other,” she said.
Sense of purpose
People living with multiple sclerosis are susceptible to both physical and emotional isolation, said Kathy Costello, associate vice president of the National MS Society.
Because MS often doesn’t have obvious physical symptoms, it can be difficult for people to understand what people like Matthews are going through, she said.
Fatigue is one of the most common symptoms of the disease, and that can mean it takes a lot more effort to do everyday things others take for granted, she added.
“Feelings of isolation can creep up, especially when people make the effort to come out and then can’t participate fully because of their symptoms,” she said.
Even when people with MS do choose to participate in activities like volunteering, they have more obstacles to consider.
Some common symptoms of MS include pain, bladder issues and mobility trouble, Costello said.
“It’s not just, ‘Will I be able to sit down?’” she said. “It’s about how far you’ll have to walk to get there, will your cognitive function interfere with what you’re trying to do. There are a lot of considerations, and people will be tempted to say, ‘forget it.’”
There are some 1,200 National MS Society support groups around the country that can help both patients and their loved ones wrap their heads around the disease and what it means for them, Costello said.
It can be challenging to come to terms with the disease, as it is a chronic condition without a cure, she said. Those with MS can take medications in different forms that work to reduce the inflammation of the central nervous system that causes the disease’s symptoms, she said.
Having a support network and dedicated activities can make those living with MS feel more connected to the world.
“We all have passions, and if we make some alterations, we can continue with those,” she said. “We all strive to feel a sense of purpose and want to do the things that make us feel good.”
