Oregon resident Mary Kellerbougher was not diagnosed with multiple sclerosis until she was 40-years-old.
“I had this fatigue that I couldn’t figure out what was going on,” Kellerbougher said. “I was a mom with young kids and working full time and working on my master’s degree. This was a new fatigue that as a nurse I could not figure out exactly what it was, so we were trying to pinpoint what it was. When you say you have fatigue there isn’t very many things you can do.
“Then, one Friday I developed numbness in my chin, and by Monday it was in my arm, and by Thursday it was in my leg and I was diagnosed on Friday. I have weakness, I have numbness, I have lost some things cognitively, like memory loss, and the fatigue is the biggest thing.”
Kellerbougher, now 48, says she probably has had MS since she was in her 20s, but it began to onset more in recent years. Her story is similar to many women struck with MS.
Carla Brady, corporate and media relations manager for the Northwestern Ohio Chapter of the National Multiple Sclerosis Society, does not have MS, but she became involved because a close family member did. She describes her motivation to the Oregon-Northwood Rotary Club, where she guest speaker at a breakfast earlier this month.
“What got me started with the MS Society, about nine years ago, my daughter-in-law was having some difficulty with numbness in her hand when she would go to pick up her coffee,” Brady said. “She would have the cup in her hand and she would drop it. She would attribute it to just being tired or clumsy, or whatever.
“Then, it would go away and there wouldn't be any more issues. It went off and on for about five months, and she happened to go out for lunch with a friend of hers, who is a nurse. And her friend said, 'That's not normal.' She said to talk to her doctor about that, which she did the next time she had an appointment.”
Brady said the doctor sent her daughter-in-law to a neurologist.
“The neurologist started looking at her history of when these things started happening, and did she have any other things that she can attribute to any particular reason,” Brady said.
From there, she went to Cleveland Clinic for an MRI and spinal tap, and they diagnosed her with MS.
“So, that's what started my involvement with the society and with the chapter, because I had somebody very close to me be diagnosed with MS,” Brady said.
Brady says an estimated 400,000 Americans have MS. Most are diagnosed between the ages of 20 and 50, and about two-thirds are women. The disease is more frequently found among people raised in colder climates. Studies show that genetic factors make certain individuals susceptible to the disease, but there is no evidence that MS is directly inherited.
MS is thought to be an autoimmune disease. The body’s own defense system attacks myelin, the fatty substance that surrounds and protects the nerve fibers of the brain, optic nerves, and spinal cord (central nervous system). The damaged myelin forms scar tissue (sclerosis). Often the nerve fiber is damaged. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to the brain and spinal cord are distorted or interrupted.
Brady mentioned some celebrities who are living with the disease, including Montel Williams, the late Annette Funicello, Jack Osbourne, and two Osmond family members. But, many times, you would never know a person has MS.
“The thing is a lot of people are either afraid or they don’t want to share that they have MS,” Kellerbougher said. “Because of many of the symptoms, people would not know that I have MS, so they don’t understand and there is no way they can understand how this is, except for somebody who is living with it.
“We don’t have an arm cut off, or we don’t these visible symptoms. I can cover up most of my medical loss that’s there, but people don’t know that. That’s why some people don’t talk about it.”
Lobbying on behalf of MS
Like Brady, Kellerbougher took her involvement to an entirely new level. She helps with fundraisers, including the popular Bike to the Bay, but had to give up her nursing career and pursuit of a master’s degree.
Kellerbougher, who is originally from Henry County, instead turned her attention to helping others living with MS.
“The number of people that I have met through the Walk is just astronomical and so are the people that I have met through the Bike to the Bay,” Kellerbougher said. “I don’t physically take part, but I fundraise and I also help volunteer. They have so many things, such as the water class, horse riding, and they have referral resources locally and nationally. There are just a lot of things to do.
“They have so many resources that it’s too hard to list them all, but once you get connected to them there are very many resources both locally and nationally that can help you find stuff that they are just astronomical.”
She is also a cancer survivor and one child is now a teenager, the other a pre-teen. Yet, she is has lobbied to legislators in Columbus and Washington, D.C. on behalf of the Ohio MS Advocacy Group.
“I think a lot of the Medicaid unbundling that we’ve been trying to work on the past three or four years through has been a major thing that we have done recently,” Kellerbougher said. “I think we played a big role and that was a major accomplishment.
“Many of the people in this area, and the whole state of Ohio, were not getting their own power wheelchairs fixed because of the bundling in the nursing homes. If they were at home they could get them fixed, but not if they were in a nursing home they were not getting them fixed, so this is a major accomplishment not just for us, but for all disabilities that were affected.”
Kellerbougher is also co-chair of a local support group through the MS Society.
“That is a big help, but not everybody likes that because they don’t like the support setting,” Kellerbougher said.