PITTSFIELD, Mass. — Jennifer Macksey's been navigating a debilitating disease for her entire life — even though she didn't know it until 10 years ago.
The mayor of North Adams suffers from multiple sclerosis, a disease she shares with nearly a million Americans and with 2.8 million people around the world.
"Every day presents a new challenge, as I contend with my internal best friend — MS," she said. "I face bear hugs of tightness, clouds of fatigue, numbness and struggles walking. But you didn't know that, did you? I pulled off pretty good. Through the years, I've learned how to pause, how to rest and how to persevere forward with my symptoms."
Macksey said those close to her have come to understand her journey — that her twitches are "break dance moves" and that she's not flirting when she winks but trying to control her rapid eye movement.
"Once somebody told me when I was first diagnosed, never to share my story about MS and they couldn't have been more wrong. My diagnosis empowers me to work fiercely every day for the community I love and to advocate for my fellow warriors with MS, I won't pretend that my journey is easy," she said.
"I face it head on every day, armed with the most spirit and spunk that I can offer today. I hope that I can be a role model for all of you and for those who struggle with MS, and that we can work together tirelessly, fiercely and effectively to find a cure for this awful disease."
Macksey was the recipient of this year's Robert L.W. "Robin" McGraw Award, created by the MS Support Foundation to recognize exemplary citizenship and dedication to helping those within the community living with multiple sclerosis. She was honored at a dinner and fundraiser for the foundation at Country Club of Pittsfield on Oct. 4.
The mayor attended with family and City Hall staff and sat down for a "fireside chat" with Jenny Wright of Massachusetts Museum of Contemporary Art in North Adams, who also has MS.
Multiple sclerosis is a neurological disease that strikes the brain and spinal cord and causes nerve damage. The symptoms can range from impeded mobility to paralysis and its effects can vary greatly from person to person. There is no cure but there is a growing number of treatments to alleviate and manage the condition.
McGraw,
the first recipient of his namesake award, has been involved with MS for 24 years in various roles, including as a member of the board of the National Multiple Sclerosis Society, and since has had three family members diagnosed.
The society's Pathways to Multiple Sclerosis Cures Initiative is one of the most collaborative MS research efforts to date, he said, and its invested $3.2 million in an international alliance and launched a Global Research Strategy Group.
The group's findings released in 2023 are that people who were treated with a disease modifying therapy within six months of their first episode of MS were 45 percent lower risk of reaching moderate disability than those treated after 16 months. Those treated within six months also at 60 percent lower risk of developing secondary progressive MS than people treated after 16 months.
"In the last 20 years, the amount of treatment modalities that have come to the forefront to be able to treat MS has been staggering. There's probably 17 or 18 major treatment facility out there right now," McGraw said. "They're helping people. They're diagnosed immediately, and that has to do with with you and everybody else that is helping to contribute to any disease."
Wende Carver, president of the board for MS Support Foundation spoke of the "silent issues" of bone tiredness, sensitivity to temperatures, eye issues and other symptoms. On the outside, most people wouldn't realize she had MS, she said.
"When I was diagnosed 29 years ago, there wasn't any good treatment for MS," said Carver. "Chemotherapy was used, and in my case, a Parkinson's drug. It was truly the Wild West, and it left me with not much hope for what progress this disease would take in my life.
"There were also next to no resources in this area to help MS patients navigate this devastating disease. This is the main reason that MS Support Foundation exists."
Carver thanked the many sponsors and attendees at Friday's event for their financial support toward information, programs and equipment to help MS patients journey a little easier, as did Executive Director Judy Bombardier in welcoming the gathering, which included dinner, a wine pull and a silent auction.
Macksey later sat down with Wright to talk about her experiences in dealing with her "internal best friend."
"I've done a whole slew of different kinds of medication and injections and infusions. They finally got the cocktail right for me," the mayor said.
She believes she had undiagnosed MS as early as age 15 or 20, when she remembers falling of her horse for no reason and falling down on the basketball court. She quit the sport and found once she stopped physically stressing her body, she was OK for awhile.
"I had just given my notice to take the vice president's job at Southern Vermont College, and I was walking back from my boss's office, and for no apparent reason, I tripped on the sidewalk and smashed my face," she said, and the emergency room doctor recommended she get tested for MS.
"From that time, I really learned how to navigate, because I had been navigating my whole life and didn't even realize how I was navigating."
It was a time of stress — new job, new house. Then she took on an even more stressful job when elected in 2021 as the city's first woman mayor. MS is something she lives with, she said, and it hasn't slowed her down.
"I think the best advice my doctor gave me was do whatever you want to now, because we don't know what your future will be and your mobility," Macksey said.
"You have to take a deep breath as much as you want to power through it, practice the pause. And that's kind of how I live my life ... I don't do anything special, other than really be realistic to what I can do each day."
