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Craig Mainor

Just a Few Hiccups in Life

Holy Name MS - Craig Mainor

Craig Mainor starts his days at 5:00 am so he can fit in an 8–mile walk before he goes to work. Twice a week he tops that off by riding his bike to his job, a 7–mile jaunt each way. He quietly affirms, "multiple sclerosis has not altered my life."

This isn't what he expected when he was first diagnosed. He had gone for tests to find out what was causing his slower reaction time and the decreased dexterity in his left hand. Like so many MS patients, finding out he had MS hit him hard and was made worse by the professionals, working in a facility near his home in Union, who delivered the news. He remembers the day vividly.

"The technician who did my MRI came in and said I had MS and didn't offer me anything but bad news," Craig said. "I still have the dried tear marks on my face."

Then the first neurologist he saw told him that he needed to quit his job as a sleep–away camp director because mobility was going to be an issue for him. The doctor told Craig to find a job where he would be sedentary most, if not all, of the day.

This recommendation confirmed what Craig and his wife already knew - he needed another doctor. They researched experts in MS and found Dr. Mary Ann Picone, Medical Director of the MS Center at Holy Name Medical Center.

"I liked Dr. Picone's style and the way she communicated from the beginning," Craig, 47, said. "She led me to believe I would be fine - there would be a few hiccups but nothing serious. And she was right."

Throughout his 16–year journey with MS, Craig has been on a number of medications, from infusions to self–injections and oral therapies, to keep him in optimal health. He said Dr. Picone continuously evaluates his progress as well as his regressions and helps him make decisions about his care.

"You can't tell I have MS by looking at me," Craig said. "My children, who are 16 and 9, know I have the disease but only because I told them. They would never know by any physical signs. You know the expression, move it or lose it. I purposely move more."

Craig also eats well. He said he was obese before getting diagnosed and between the exercise and a better diet, he has lost a considerable amount of weight.

He did change jobs, but not because of his MS. Craig moved on to become executive director of a non–profit in Newark and his disease has never interfered with his jobs. He's had about six flare–ups over the years but said the care he receives from Dr. Picone and the entire team at the MS Center has made them easy to handle.

"If I call and say my fingers are numb or my one eye is blurry, it's like the bat signal goes up and everyone goes into action to address it," Craig said. "When I go to the MS Center, I feel like Norm on Cheers - everyone knows my name. It's the personal connection I have with everyone on the staff - from the people taking blood to the front desk receptionist. Dr. Picone and her staff are the reason I drive an hour when I probably pass about four neurologists on the way that are qualified to treat me."

Keeping a good mental outlook is also vitally important and Craig is happy to pass on positive messages to anyone who has been diagnosed. Recently, he learned that a cousin also has MS.

"Twenty years ago there weren't many options in the treatment of MS," Craig said he told his cousin. "Today, there are so many options so don't let it get to you – just make sure you find a good doctor. I'm even hoping there will be a cure in my lifetime - they've come such a long way in the treatment of this disease."

Learn more about MS Center at Holy Name