By Gary Bennett
This article appears in the Health & Fitness section of the Frederick News-Post, March 26, 2024.
Frederick resident Robin Brown remembers getting her multiple sclerosis diagnosis like it was yesterday. It hit her like the proverbial ton of bricks.
“I woke up one Saturday morning — it was April 26, 2008; I was 47 years old — and felt a tingling on my left side. I’d never felt anything like it before. Because a dear childhood friend had just survived two brain aneurisms, I got scared and took myself to the ER.”
Once there, she endured an MRI of her brain and spine. The neurologist on call delivered the bad news that she “probably” had MS.
Since MS is notoriously challenging to diagnose, she soon found herself at Johns Hopkins in Baltimore for what she hoped would be a reversal of the initial diagnosis. She got the requisite lumbar puncture (also known as a spinal tap), which was frightening in its own right, and when the proteins came back positive for MS, the diagnosis was official.
“It was shocking,” Brown said. “No one in my family has it. My mother has rheumatoid arthritis, so I thought it may be that. The doctors ruled out other auto-immune disorders first such as Lyme disease and lupus. It only took four months to get my diagnosis, and that’s not normal. It usually takes a lot longer.”
WHAT IS MS?
Multiple sclerosis is a disorder in which the body’s immune system attacks the protective covering of the nerve cells in the brain, optic nerve and spinal cord, called the myelin sheath. It causes communication problems between the brain and the rest of the body. It is potentially disabling and affects nearly 1 million Americans.
Doctors don’t know why this happens. It is not necessarily genetic, environmental or due to the actions of the patients. Some studies show it may be a virus that can be contracted as a teen and remains dormant until later in life, but nothing has been conclusive.
Signs and symptoms of MS vary widely between patients and depend on the location and severity of nerve fiber damage in the central nervous system. Some people with severe MS may lose the ability to walk independently. Other individuals may experience long periods of remission with no new symptoms.
There is currently no cure, but treatments are available to help speed the recovery from attacks, modify the course of the disease and manage symptoms.
GETTING TO WORK
There is a bright side to Brown’s harrowing diagnosis.
In characteristic fashion, she threw herself immediately into the fight to find a cure. She was diagnosed in 2008 and began her association with the National MS Society the next year, where she’s been a valuable fundraiser and leader ever since.
To help find a cure and support those with MS, Brown is active in the MS Society’s main worldwide fundraiser, Walk MS.
“Walk MS brings us together,” she said. “I love that it gives me the opportunity to make others aware. It helps me feel not so alone. When I was diagnosed, I felt very alone.”
Walk MS is an event held in hundreds of cities throughout the world where the MS community, including supporters and loved ones, come together to walk, run or bike in support of those living with MS and raise funds to help find a cure.
Everyone is welcome to participate. There is no registration fee or fundraising minimum. While there is no fee to participate, every dollar raised helps those living with MS and their supporters. Since its inception in 1988, Walk MS has raised more than $1 billion to help people with MS and their caregivers.
According to Brown, the funds don’t all go to science. Some are used for critical but sometimes overlooked things, like respite care for caregivers, walking devices or vehicles that are wheelchair accessible.
“I do this for everybody, and, of course, it could be me one day that needs these things.”
WALK MS FREDERICK
Frederick’s next Walk MS event begins at 9 a.m. April 13 at Frederick High School. The day starts with a snack, sponsor booths, photos and an official ceremony.
At 10 a.m., participants start walking on the site’s supported and accessible routes, winding their way through Baker Park and back to Frederick High. There is a 3-mile route and a 1-mile route for those not quite as ambitious. The route is accessible for wheelchairs and strollers. The event concludes at noon.
New attractions this year include the Center for People Living with MS and Circles of Support. The Center provides information about the MS Society programs and resources, including self-help groups and navigators. Individuals living with MS also receive swag items there.
Circles of Support provides complimentary hand-held circles to use during the opening ceremony: yellow for those who support the mission to cure MS, green for those who love or care for someone with MS and orange for those who live with MS. The waving signs are sure to be a memorable scene at the event.
Since recent COVID-19 restrictions have been detrimental to the Frederick walk, Brown has been asked to help rejuvenate this year’s event. Her role is to be a powerhouse fundraiser and key awareness advocate for the society and walk. She has done so for many years. She heads up a team affectionately known as Robin’s Peeps, a group of 10 to 12 team members who bring awareness to MS, raise funds and support each other.
In 2023, Frederick’s MS Walk raised about $62,000 and had 295 participants. Brown and her team raised $15,000 of this total and was the top team in Frederick. Brown personally raised $13,475 of the $15,000, which ranked her No. 157 in the nation, out of more than 100,000 participants.
The goal for the 2024 Walk is to have more than 350 participants and raise $67,000. The Greater D.C.-Maryland chapter, of which Brown is a member, aims to raise $1.2 million this year during their 10 Walk MS events in Maryland, D.C. and Northern Virginia.
LIVING WITH MS
Brown does all this even though she has been one of the lucky ones whose symptoms have not progressed over the years. She doesn’t take this good fortune for granted. She leads an active life and works full-time as an associate agent in a busy insurance office.
“I know how lucky I am. I found the correct neurologist for me, and together we chose the correct treatment,” she said. “I use a medication called Rebif, which is injected three times a week. I am faithful to it, and it’s worked well for me. I’ve been on that same treatment since September 2008, and it has held everything at bay.”
Brown also credits her support system as key to her success. She counts support from her husband, mother, sister, other family members and countless friends as immeasurable.
“It is support for which I never have to ask. I attribute my success to working hard to manage my MS and to this unwavering support.”
Her deceased father also plays a surprisingly key role.
“My dad, who passed away in ’22, was always amazed about my attitude toward MS. He used to say that I have such a positive attitude that it’s never going to beat me. I hold on to that. It’s almost as if I just don’t want to let him down.”
Brown also co-leads a local peer support group called Messy Friends, with Dee Walter, a fellow MS warrior. The group allows folks to know they are not alone. They serve as a resource to provide information and share individual experiences.
“We Messy Friends don’t know everything, but we usually have access to information that’s helpful,” she said.
Gary Bennett is a longtime Frederick resident who spends his time hiking, biking, volunteering and providing childcare for grandchildren. He is married and retired from his career as a nonprofit marketing executive.
