Support group provides hope to MS patients, families

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By Cindy DiFazio

Staff Writer/Photographer

When John Roberts had trouble using his hands the doctor said he suffered from carpal tunnel syndrome.

When his vision blurred, a detached retina was blamed. When Roberts, of Eminence, had difficulties with his balance doctors diagnosed an inner ear condition. The worst was when doctors said he’d had a stroke.

After months of tests and misdiagnoses, Roberts finally was correctly diagnosed with Multiple Sclerosis, a disease with a staggering number and combination of symptoms — but no known cure. “Everybody’s different,” he said.

Roberts recently shared some of his story at a meeting of the MS Support Group at the Pleasureville Christian Church.

He is 57 and a former Henry County school teacher, coach, athletic director and alternative school assistant principal. Roberts was diagnosed in his mid-thirties and retired nine years ago. “I had to take early retirement because of the MS,” he said.

MS Support Group

MS Support Group founder, Betty Brewer, 61, was diagnosed with MS at age 42. “In Henry County, we’d never heard of MS,” she said. “There’s a need for this group.”

“We have several people in the community who have it,” Brewer said, citing the example of a local family where a man and his grandmother both struggle with the disease.

Pleasureville Christian Church pastor Rev. Libby McManis facilitates the meetings where topics range from the practical to the spiritual. 

McManis has waged her own battle with an autoimmune disorder. She was diagnosed with myasthenia gravis while in college at age 19. Myasthenia gravis translates literally to grave muscle weakness.

“It looks a whole lot like MS,” McManis said. “It started with double vision and weakness.”

Two physicians told her she was just stressed out, but after weeks of unrelenting symptoms McManis was sent to the University of Kentucky Medical Center. “I got the big diagnosis,” she said.

McManis recalled her experiences with myasthenia gravis. “It got bad,” she said. “I was stuck in a bed or chair.” However, McManis said she retained her optimism throughout the ordeal. “I never thought it would always be that way,” she said.

McManis said she experienced a complete recovery following surgery to remove her thymus gland. “They come up with new stuff every day,” she said. “If you’ve got that attitude it helps.”

Brewer said she also quickly found out what MS can do. “There were days when my eyes wouldn’t work or my legs or hands,” she said, “so I used the things that did work.”

She said she spent her days making stuffed bears out of burlap after a friend brought her a pattern. Crafting over 500 bears was a form of therapy.

Brewer said she now shows no signs of MS. “I’m doing great and I’m so positive,” she said.

Brewer said she found using nutritional supplements improved her condition. “Nutrition is kind of a weak link for us,” she said. Brewer is no longer on a 30-pills a day supplement regimen, but noted everyone can benefit from small changes. “Try to find food made with fewer chemicals,” she said.

Roberts’ wife, Mary, also is a retired Henry County teacher.

She said she was pregnant with their youngest son, Ben, when John got the “big diagnosis.”

Mary Roberts told the group that some things have changed for the better in their shared lives. “It’s been a blessing in a way,” she said. “He was never home, he had to be at every sporting event.” Mary Roberts said that although John found himself in a position where he could no longer play ball or go fishing, he was with Ben a lot.

She said their marriage grew stronger as well. “We were on the road to not being close,” Mary Roberts said. “It brings you back together.”

Brewer said it helps to take one day at a time. “That’s how we all live life anyway,” she said.

Noting her husband’s relapses always occur in the middle of the night, Mary Roberts said she and John practice the “one day at a time” mantra every morning. “He always feels blessed when he wakes up in the morning, throws his leg over and can stand up,” she said.

McManis agreed that illness while weakening the body may strengthen the character. “Think of your values,” she said. “When life is going fine you’re not as thoughtful and considerate. When you take the dive yourself you become more compassionate. It kind of humbles you - you get real.”

John Roberts, who uses a cane for balance, admitted there are tough times. “You just want to be back like you used to be,” he said. “Early on I could maneuver and now that’s gone. It’s frustrating.”

While doctors were searching for the cause of his symptoms, Roberts also went through invasive medical tests including a spinal tap and a painful eye test. “Now that I think about it you have had a rough time,” Mary Roberts said.

Other challenges facing the Roberts include finding drugs that address John’s symptoms without breaking the bank. He took once weekly Avonex, an injected drug for many years. The cost was $1,400 monthly. Doctors now are trying Roberts on a new drug called Rebiff. “My meds went from $1,400 to $2,000 a month,” he said. As retired teachers, John and Mary are supposed to have health insurance coverage for life. “We worry every year about our insurance,” Roberts said. “They keep talking about dropping it.”

He also has anxiety about falling. “The only thing I fear now is ice,” he said. “I really have a fear of falling. I couldn’t get up. I’d have to just lay there.”

Mary Roberts said John attends a water exercise class at Clear Creek in Shelbyville to help retain his strength and mobility. Clear Creek offers classes several times weekly from which folks with all kinds of physical challenges may benefit. Mary Roberts said she asked the physical therapist if John would ever regain his strength if he does the therapy. He replied in the negative, but stated it may keep him from getting worse.

Brewer lightened the mood. “I think if you have to do this water therapy,” she said, “your wife should supply you with young girls in bikinis.”

McManis offered this encouragement. “Whoever said he won’t get better, that’s not necessarily so,” she said.

The hour went by quickly. There was a free exchange of ideas, participants listened to one another respectfully and offered constructive support.

John and Mary Roberts said they had previously resisted joining a support group. “I didn’t really want to come,” Mary Roberts said, “but being with you all has made me think of things I never considered.”

McManis said she had never been in a support group either and was thinking about how to start one. “I think the people who come to a support group make it what it is,” she said, “and new people come in and make it what it should be, one day at a time.”

The Multiple Sclerosis Support Group meets at 2 p.m. on the third Saturday of every month at the Pleasureville Christian Church, U.S. 421. Call Betty Brewer at (502) 845-4976 for more information.

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