Life with Multiple Sclerosis

The earlier your multiple sclerosis is diagnosed, the better the chance of slowing the progression of this insidious disease with the right treatment.

In some ways, Adriane Emerson, 38, lives like most everyone else. She gets up in the morning, prepares for her day, commutes to work and back, ties up loose ends, sees to her kids’ needs, and, maybe, finds some time for herself before going to sleep.

Unlike most everyone else, she gets through her days knowing she is battling multiple scerlosis (MS), diagnosed eight years ago with the most common of four types – relapse-remitting MS – after her left leg started tingling and felt numb.

About 85 percent of people with MS are initially diagnosed with her type. More than likely, her condition will progress over time, but no one knows how quickly. So far, her fight has been like a skirmish between two small companies of Civil War soldiers. Few, if any, casualties with a hasty retreat.

Emerson injects herself in the thigh once a week with Avonex (interferon beta-1a). The drug has been shown in clinical trials to slow progression of the disease, meaning less risk of further disability. After eight years, so far, so good.

“That’s the worst part, the injections,” she says. The drug has helped pin the disease down, but Emerson knows the disease could still progress because there is no cure. She bluntly adds that she could “be in a wheelchair someday” but for now does everything she can to prevent that.

She takes vitamin D regularly. Having low levels of vitamin D can make MS worse. Though it’s not proven, vitamin D deficiency may even contribute to the development of MS, according to Emerson’s neurologist, Geoffrey Eubank, MD, medical director of the Mid Ohio MS Center at OhioHealth Neurological Physicians.

Emerson also loads up on fruits and vegetables, in accordance with the best science available, because they may help slow the disease. Fruits and vegetables contain antioxidants, compounds that prevent cellular breakdown, a key process in the worsening of MS. She exercises regularly, again because it “certainly can be beneficial in managing certain symptoms” and may have “protective effects” overall, Eubank says.

Emerson vigilantly watches for new symptoms and avoids overtaxing herself, completing tasks in chunks, then taking naps. Rest helps her avoid fatigue and stress, which can affect her central nervous system and might worsen her disease.

“I consider myself lucky,” she says.

At the other end of the MS spectrum is Madelyn Solomon, 64, also diagnosed at age 30. She has the rarest form, progressive-relapsing MS, which steadily progresses with little or no remission of symptoms. Ten to 15 percent of people with MS are diagnosed with this type, often later in life than other types of MS. Her fight has been an all-out war. She is largely incapacitated and needs around the clock care. The disease has even crippled the muscles she needs to speak clearly.

Her husband, Michael, does the talking for her.

Like Emerson, Solomon noticed some minor symptoms that soon led to her diagnosis. Friends advised Michael to “end the relationship” because the couple had been together for only a month. They told him he didn’t know “what (he) would be saddled with.”

“It was a life-changing moment for me,” he says. “Do I decide to continue with my crazy, selfish ways, or do I do what my heart tells me,” he recalls thinking. “My heart told me I was in for a ride. But it also told me this was an opportunity I could not walk away from. Here was a person I could possibly help and comfort, and just to deny that didn’t feel right to me.”

Thirty-four years later, they remain in the same Chicago apartment, sharing it with a live-in caretaker. Madalyne first lost the use of her legs, then the disease spread to her arms and finally to the parts of her nervous system that control breathing and speaking.

Although Madalyne needs constant care, having a live-in caregiver helps Michael. Being a family member and a caregiver is an incredible burden that can wear you down. Michael also rents a small apartment, a getaway place where he spends two days a week, a reminder that, to help take care of her, he needs to take care of himself.

The couple remains in love, partly because, through it all, Madalyne still has the sweet, positive mental attitude that attracted Michael in the first place. For his part, Michael has used the challenge as a way to grow spiritually and understand the true meaning of caring and friendship.

MS is an insidious disease that attacks the brain and spinal cord. There is no single test for the condition. It often progresses for years without a formal diagnosis, probably because many of its most common symptoms are found in so many other conditions. Common symptoms include fatigue, numbness or tingling, walking difficulties, and spasticity. More than 250,000 Americans have been diagnosed with MS.

If you have symptoms, see a neurologist. While there is no cure, MS symptoms can be treated. The earlier the diagnosis, the better the chance of slowing its progression.

For more information, visit the National Multiple Sclerosis Society and the Multiple Sclerosis Foundation.