Pastor James Yansen - 11.25.17 "Living Without Regrets"
Counting Blessings and Living Without Regrets With Multiple Sclerosis
Facing an aggressive form of MS forced an early retirement, but that hasn't kept this chemical engineer from enjoying life and inspiring others with his blog.
By Jennifer Anderson
Medically Reviewed by Pat F. Bass III, MD, MPH
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While interviewing for a job in 2000, Mitch Sturgeon got a call from his primary care doctor with the results of an MRI scan.
Sturgeon, who lives on the coast in Maine, had been having trouble keeping his left foot moving in a heel-toe motion when on the treadmill. An Internet search identified multiple sclerosis as a possible cause, but the trouble was so minor that Sturgeon didn't think that could possibly be the problem.
The doctor thought otherwise and said something that led Sturgeon, then 38, to believe he had just 20 years left to live. “For the first time since I was a little boy, I cried,” he says.
A neurologist later confirmed the diagnosis: a form of multiple sclerosis known as PPMS, primary-progressive multiple sclerosis. No one really knows whether PPMS is a separate disease from the more common RRMS -- relapsing-remitting multiple sclerosis, says Robert Bermel, MD, a neurologist in the Neurological Institute's Mellen Center for Multiple Sclerosis at the Cleveland Clinic in Ohio. It could be the same disease just manifesting differently in different people, he said.
With PPMS, people typically describe a loss of abilities as “creeping up,” Dr. Bermel says. With RRMS, they usually can pinpoint when they lost a specific ability.
Approximately 400,000 people in the United States have been diagnosed with MS, and of those, about 10 percent have primary progressive, according to the Multiple Sclerosis Society of America.
Sturgeon recalls leaving the neurologist’s office on that first visit, confident he could beat the disease. “I didn’t realize at the time what I was up against,” he says.
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Medications With Minimal Benefit
Bermel explains that MS is largely an autoimmune disorder in which the white blood cells attack the covering on the nerve cells. With PPMS, there tends to be less inflammation than with RRMS and more neurodegeneration. That's why most medications approved for MS are not much help when the disease manifests as PPMS.
Sturgeon tried the medications. A year of quarterly novantrone infusions left him fatigued, and copaxone felt like a daily bee sting and didn’t work for him anyway. Neither did methotrexate, an oral chemotherapy drug.
Help From a Cane and the iBot
A chemical engineer, Sturgeon revealed his diagnosis to his employer in November 2001 and was laid off six months later.
Hired by another firm, he largely kept his disability hidden, though by 2003, he was feeling increased weakness in his legs. A company retreat in 2004 became what Sturgeon describes as his coming out -- he brought a cane to help him participate in the scavenger hunt and other planned activities. Sturgeon stayed with the company for another five years before retiring.
The cane and then forearm crutches sufficed for a while, but in 2008, Sturgeon transitioned to a wheelchair. His choice, the iBot, has four-wheel drive capabilities and even climbs stairs.
With the iBot, Sturgeon was able to accomplish goals with MS, such as continuing to go to the beach, on hikes through wooded trails, and to Fenway Park and other events in nearby Boston. Still, he’s had to let go of several passions. An early loss was golf. Later, after losing confidence in his ability to operate his minivan, he gave up deer hunting.
Enjoying the Ride
Sturgeon credits his ability to stay positive and content with life on two things: his ability -- perhaps a genetic predisposition -- to count his blessings and the example his mother set.
When Sturgeon was six, an injury left his mother paralyzed from the neck down. “She handled disability with extreme grace,” he recalls, remaining active in her community and never complaining.
Sturgeon emulates her and describes himself as fortunate. He made a conscious decision “not to spend time regretting what I’ve lost,” he says. “It’s not because of intestinal fortitude. It’s that I’ve been fortunate enough not to have fallen into despair.”
In 2009, he launched a blog called "Enjoying the Ride" to help pass the time and because he thought he might be able to help other people and, in the process, inspire others in spite of MS disability. The feedback he gets energizes him to keep writing.
Not knowing how he’ll feel in a year, Sturgeon and his wife never plan more than a few months ahead. But they live in a vibrant neighborhood and like going to local concerts and sporting events, and having friends over.
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