Living With MS

May 22, 2020

Derek Winter has spent a lifetime being proactive about his health, including playing on many sports teams and seeing doctors immediately when illness strikes. This take-charge style is one reason Derek, diagnosed with multiple sclerosis (MS) six years ago, meshes so well with his dedicated MS specialist and medical team at Jersey Shore University Medical Center.

It took about two years of clumsily tripping and falling “out of the blue” before Derek, now 55, received the correct diagnosis from doctors. After learning he had MS, which occurs when the body’s immune system mistakenly attacks nerves in the brain and spinal cord, Derek’s condition rapidly deteriorated. A quick progression from using a cane to needing a walker, scooter and then a wheelchair prompted Derek to push for tests pinpointing his disease type as primary-progressive MS (PPMS), a more aggressive form that doesn’t include remissions and generally leads to worsening disability over time.

But only months after moving to Brick, New Jersey, to a handicapped-accessible apartment building and seeking treatment at Jersey Shore’s new Multiple Sclerosis Center, which opened in summer 2019, the father of one is much more satisfied. Neurologist and MS specialist David Duncan, M.D., took a comprehensive approach to Derek’s condition and treatment from the first consultation. Derek also visits the center to receive infusions of an IV drug specifically approved for PPMS, which has slowed his disease.

“Dr. Duncan was so thorough at my first appointment that I couldn’t believe it,” Derek recalls. “I really like that, because if I feel something is wrong, I don’t want to let it sit and brew and get worse. Having someone so thorough like that put me at ease.”

World-class Specialists

In late 2019, Neurologist Mary Sedarous, M.D., was the first Jersey Shore doctor to assess Derek after he moved to Brick, where his adult son also lives. But Dr. Sedarous, medical director of the hospital’s ALS Center, knew Derek would benefit from the newly minted MS Center and Dr. Duncan’s expert focus on MS, making the key referrals.

“Derek actually had perfect timing because the MS Center opened right around the time he came to see me. The biggest thing for him was to find a place close to home to receive his medication infusion,” Dr. Sedarous explains. “He previously had dealt with a lot of issues with access and transportation that would have limited his ability to get treatment, so it was fortunate that we had just opened the MS Center here.”

As an MS specialist, Dr. Duncan knows the most up-to-date treatment guidelines and keeps tabs on the rapidly increasing medications appropriate for patients with various forms of the disease.

Additionally, such specialists are knowledgeable about emerging clinical trials in MS that can increase a patient’s options. “We’re focused specifically on the problems associated with MS, so we look at each patient as a whole, including urologic, ophthalmologic and ambulatory issues related to MS,” Dr. Duncan says. “We also look at other disease processes that can make someone with MS progress more rapidly.”

Navigating Independent Living

Maintaining independence is crucial to Derek, so his care has included spending time at two rehabilitation facilities. At Hackensack Meridian Health’s Subacute Rehab Center in Wall, New Jersey, Derek learned a bevy of skills related to navigating everyday life solo from a wheelchair, including getting in and out of his chair to bathe, use the bathroom and get in bed.

Other proactive measures that preserve Derek’s ability to live alone include wearing a Life Alert button to call for emergency help, donning a special cooling vest to prevent overheating in summer temperatures—a particular concern for MS patients—and joining a gym that offers a handicapped-accessible pool.

As part of Dr. Duncan’s holistic approach, Derek is following a strict eating plan that limits oils, dairy products and red meat, as well as taking vitamins that may become deficient in MS patients. “When you’re in a wheelchair, it’s harder to exercise, so this is better for my overall health,” Derek says.

And while his condition—and all the accommodations he must make to live independently—can sometimes take a toll on Derek’s mental health, he is determined to live with intention. “I’m not letting this disease hold me back. I’m just trying to take care of the things I can and keep everything else from getting worse,” he says. “I don’t see myself walking again, though I would be grateful if it happens. But my mind is as sharp as a tack, I can see fine, and I can feed and bathe myself. My legs just don’t work, which isn’t the worst thing in the world.”

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