Hamlin doesn’t let MS slow her down, everRaeAnn Hamlin, this year's ambassador for the MS societies of northern Minnesota and northern Wisconsin, is working to educate folks about what it means to have MS and why people from this region, in particular, should care. (Hint: it's a lot more common in places farther from the equator ... like Minnesota.)
RaeAnn Hamlin found out she had multiple sclerosis 13 days before her graduation from the College of St. Scholastica.
“I had a performance at Central High School that night, to accompany a choir, and my neurologist was like, ‘Oh, I guess I was wrong. You do have MS,’” Hamlin said, sitting in the reception area of her business, Hamlin Music Academy. “I was in a fog that night, playing and thinking, You guys don’t even realize what I’m going through.”
To be honest, Hamlin didn’t initially realize what she was facing either.
“People don’t know what MS is,” she said. “Why would you? I didn’t know. I was like, whatever, give me the pill; I’ve got to get out of here.”
That was 13 years ago.
Now, as this year’s ambassador for the MS societies of northern Minnesota and northern Wisconsin, Hamlin is working to educate folks about what it means to have MS and why people from this region, in particular, should care.
First things first: at its most basic, multiple sclerosis is a brain disease. The myelin, the protective insulation surrounding the nerve fibers of the brain and spinal cord, starts to break down. That breakdown interrupts the flow of information between the brain and nervous system and whatever part of the body it’s trying to communicate with. This can happen in “multiple” places over time. When the myelin is destroyed, it is replaced by scars of hardened, or sclerotic, patches of tissue.
Hamlin is patient with the uneducated, but blunt.
“I’m not one of Jerry’s kids,” she says, referring to comedic actor Jerry Lewis’ annual telethon for the Muscular Dystrophy Association. “They’re both M-words, but different diseases.”
While MS can affect people’s muscles, it’s not because the disease is making the muscles weaker the way muscular dystrophy does. It’s because the signal from the brain to the legs, fingers, etc., is being interrupted. The scar tissue from the broken-down myelin affects the way electrical impulses travel along the nerve fiber, distorting and interrupting signals coming to and from the brain and spinal cord. This may result in symptoms that are relatively mild — such as numbness in the limbs — or severe, such as paralysis or loss of vision.
That’s what MS is.
Here is what MS is not: It is not a death sentence.
According to the National Multiple Sclerosis Society, the projected life span for most people with MS is 93 percent of the non-MS population.
It is a life unexpected, however. Because MS affects people differently, there is no handbook that tells people what to expect next. Symptoms vary from person to person; they also vary from time to time in the same person. One could have episodes of numbness and tingling, while another could have loss of balance and muscle coordination, making walking difficult. For others it might be slurred speech or tremors.
For Hamlin, one of the first symptoms was optic neuritis, inflammation of the optic nerve that may cause a complete or partial loss of vision. Optic neuritis usually develops due to an autoimmune disorder — which researchers think MS is — and can be an indication of MS, according to the Mayo Clinic Web site.
At times, MS has put Hamlin in a wheel chair. For another period of time, it affected her fingers — not a good thing for a pianist/piano teacher.
Now, however, she shows few outward signs of the disease. Part of that improvement she attributes to a Tysabri, a drug she’s been taking intravenously since 2007. She also credits various alternative medical treatments.
Her mindset has surely made a difference as well.
When nominating Hamlin for the Duluth News Tribune’s 20 Under 40 awards in 2008, Maryellen Kervina wrote about how many different ways Hamlin makes a difference: from owning two successful businesses plus holding two additional jobs, to her numerous volunteer roles with the Western Area Business and Civic Club (WABCC) to playing the piano and organ at St. Francis Xavier church.
Kervina had a list of adjectives to describe her friend, none of them negative: Professional, positive, fun, upbeat, persistent, organized and selfless were just a few.
“My friend doesn’t wear her disease on her sleeve,” wrote Ivan Hohnstadt, another friend and former co-vice president (with Hamlin) of the WABCC whose son Evan takes piano and voice lessons at Hamlin’s. “Most people she encounters are surprised to learn of her affliction. When they do learn of it, she dismisses it quickly and redirects the conversation to the task at hand. She gets stuff done!”
This year Hohnstadt and his son are joining Hamlin in the annual MS walk, where Hamlin will be captain of RaeAnn’s Rockin’ Walkers Walk team (which anyone is welcome to join).
While there is no cure — yet — for MS, Hamlin is hopeful. There are better drugs available now for treatment, although they don’t come without risk.
She wants a cure for herself; she also wants a cure for the 2.5 million people around the world who also have MS.
Why should you care? Because the farther you get from the equator, the higher the incidence of MS. This disease affects affects nearly 10,000 people in Minnesota and western Wisconsin. In places like Florida, on the other hand, MS is much less common.
“Whether you’re in the Cities or Duluth, it’s everywhere,” Hamlin said. “You don’t know who has MS, ... It could be someone sitting next to you.”
To get involved in the annual MS walk May 2 (along the Lakewalk in Duluth), go to walkms.org or call Kris at (612) 335-7922. To join Hamlin’s Rockin’ Walkers, call the music academy at 624-2619.