Working Through Multiple Sclerosis, Like Millions With MS Worldwide

MANCHESTER – She was having dinner with a friend when the tingling started, up and down her left arm. She thought she was having a heart attack.

Sabina Skibo, the longtime clerk for Manchester Township, was taken to the hospital where she was told her heart was fine. Tests showed some neurological issues without a firm diagnosis at that point. The next morning, making a fist with her left hand was impossible. She was hospitalized and ran through a battery of tests. Quickly, she lost all movement on the left side of her body. Skibo could only walk with the assistance of a cane.

Her doctors here were baffled. So Skibo finally visited a physician in North Jersey who ordered another round of testing. The results came back immediately: Skibo had multiple sclerosis, a neurological disorder that causes blurred vision, weak limbs, tingling sensations, unsteadiness, memory problems and fatigue.

The body’s immune system attacks that central nervous system – the brain, spinal cord and optic nerves. Those attacks – inflammation – destroy the body’s myelin, the fatty substance that protects nerve fibers. There are four general disease courses – Clinically Isolated Syndrome, Relapsing-remitting MS, Secondary progressive MS, and Primary progressive MS – that determine how severely the disease affects the body.

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Skibo was diagnosed with relapsing-remitting MS, as are about 85 percent of those diagnosed with MS. According to the National MS Society, that phenotype is “characterized by clearly defined attacks of new or increasing neurologic symptoms. These attacks – also called relapses or exacerbations – are followed by periods of partial or complete recovery (remissions). During remissions, all symptoms may disappear, or some symptoms may continue and become permanent. However, there is no apparent progression of the disease during the periods of remission.”

There’s no known cause and no cure for MS, which affects 2.3 million people worldwide, according to the WorldMSDay.org. Most people are diagnosed between the ages of 25 and 31, and more women than men are struck with the disease.

No one in Skibo’s family was ever diagnosed with MS. She had been out of the country with one of her children a month before, and believes she picked up some virus that triggered the disease.

“Normally, you are diagnosed up to the age of 50 is the norm. So, that was actually a few weeks before my 50th birthday,” Skibo said.

The diagnosis triggered something else in Skibo: a depression. She described that time as dealing with a death, the death of the life she had planned to lead. But one woman she met through an MS support group gave her some perspective.

“She told me I had three months, and I said, ‘What do you mean I have three months?’ You start, oh my God, because you think it’s a death sentence when you get diagnosed. And she said, ‘Three months to get off your pity party, and picking yourself up, and deciding what you want to do, and not letting the MS decide how it’s going to run your life. So, you can live with MS, you just have to learn to manage your life around that.’ And so, I do.”

The epicenter of her disease is located in her spine. She suffers from crushing fatigue and extreme pain, especially in her spine, but manages symptoms through diet, light exercise and medications.

“I try not to let it stop me from doing what I need to do,” she said. “I’m a person who has MS, but it does not define who I am.”

Her family is the most important thing to her, she said. She also loves her job and is proud of the work she does as municipal clerk in Manchester. She’s passionate about both, but realizes that there are times she has to slow down and rest. She said both her family and colleagues have been supportive of her new normal.

It’s been 13 years since her diagnosis. A year after learning of her MS, Skibo’s son formed “Sam’s Squad,” a group of friends who walk to raise money in the Walk MS: Seaside Park every year. Skibo raised nearly $2,000 for this year’s walk, which took place April 27. The money goes to the National Multiple Sclerosis Society

“It was through the efforts of the township. We have employees who are so generous. They host a breakfast. It’s a donation to the MS Society but they get a breakfast and they get a dress-down day, so it’s a lot of fun for everybody. They’ve been very good to the cause every year,” she said.

The particular evil of MS is its unpredictability. While there are general symptoms associated with the disease, it’s progression and severity hits each individual differently. According to the National MS Society, some people can live asymptomatically for decades while others will rapidly decline.

Forced by necessity, Skibo has immersed herself in medical research about MS. She’s excited about stem cells, those that come from adults or umbilical cord blood, and how that might one day offer a cure, or the very least a therapy to halt the disease’s progression and possibly reverse it. She has benefitted from interferon betas that have likely helped prevent her from slipping into a more progressive form of the disease.

“Everybody has some disease, illness, pain, and you need to understand where people are coming from, because visually, from the outside, I get that a lot. ‘Oh my God, you have MS? I would never have thought that,’” Skibo said. Yes, she has MS; she has very limited feeling in her left arm and had to reteach herself to type after her initial MS attack. “It’s difficult because people see you and they don’t understand. It took my family a while to get that I looked good from the outside but I’m having a bad day. So it’s difficult, but those days come for everybody no matter what their affliction is. You just have to get past that. So if you learn to do what you need to do to move forward, and get your family to understand that sometimes you can’t keep those commitments that you would love to have kept, sometimes you just can’t do that, and my family has come to understand that. People from the outside looking in, sometimes it’s a little more difficult for them to understand unless they’ve seen you at your worst. I hide most of that at home.

“I’m one of the lucky ones. I’m still walking, which is why I do the MS Walk every year. …I’m not going to change a thing I do. Until there comes a point where it stops me in my tracks, and I’m hoping that doesn’t happen, I don’t know what the future holds. I just play it one day at a time, and hope I get through another day and I’m still walking, I’m still talking, I’m still functioning.”

World MS Day is May 30.