\'You\'re Not In This Alone\': Myasthenia Gravis Patients Support Each Other

By Kayleen CubbalFor The Times

The Rev. Mel McRoberts was driving to Maryland to visit his son 12 years ago when his wife asked a question that would change his life.

She said, "Mel, does it seem like your left eyelid is drooping?" McRoberts said.

When the situation worsened in a matter of minutes, McRoberts pulled into a vision center and asked the optometrist there to take a look.

"He examined me and went in the back and got a medical book," McRoberts said. "He said, 'I'm not in a position to diagnose you, but I think you might have myasthenia gravis,'" McRoberts said. "I said myasthenia gravis? I wasn't even sure exactly what that was. We turned around and went back home."

The Rochester resident and retired pastor of Rochester Free Methodist Church learned he did, indeed, have the autoimmune disease characterized by weakness and rapid fatigue of muscles.

McRoberts has spent the last decade-plus researching the disease, learning to deal with its side effects and volunteering for Myasthenia Gravis Association of Western Pennsylvania, which added him to its board of directors. When the organization was looking for a facilitator for its monthly support group at Heritage Valley Health System in Beaver, McRoberts proved to be the perfect choice.

McRoberts, 67, meets with a group of a dozen or more MG suffers from 1 to 2:30 p.m. on the third Saturday of each month. They share stories and discuss medications and symptoms.

Mostly, though, the group talks about how to live with the disease.

"I learned the hard way that there are limitations and you have to pay attention to them," McRoberts said. "I had run a marathon not long before I was diagnosed with MG and around 2008, when I was feeling pretty good, I decided to run another one. It was a mistake. My body couldn't handle it. I ran a 4:31 before my diagnosis, after it, I ran a 6:45. The only reason I finished was because I willed myself to do it. Now I understand what I can do, and I don't try to do any more than that. You absolutely have to listen to your body.

"The first thing we stress to those who attend our support group is that you're not in this alone," he added. "It's called the 'snowflake disease' because it affects every person who has been diagnosed with it differently. So what I have experienced might not be the same that the person next to me has experienced. You just have to know your limitations. And even though it's hard sometimes, you have to accept them."

Like many MG sufferers, McRoberts also learned that he is unable to fight off illness as he could previously. Four years ago, he got the flu and became so weak, he was hospitalized in the intensive care unit. His weight plummeted from 190 to 167 pounds.

Myasthenia Gravis Association of Western Pennsylvania, a nonprofit based in Pittsburgh, oversees the organization's involvement in Beaver County, including the support group run by McRoberts.

Executive director Maree Gallagher, who has been with the organization for five years, is based in the association's offices located in a professional building located next to Allegheny General Hospital. The location enables it to easily partner with the hospital and Allegheny Neurological Associates and have access to its treatment center and patient clinics. After working for various nonprofits, Gallagher, a Crafton Heights native who now lives in Kennedy Township, says she was drawn to the service aspect of the association.

The organization, which fundraises most of its operating expenses, receives a hospital stipend to help, as well as an allocation from the United Way of Beaver County. MG affects 30 in every 100,000 people. Of the association's 16 board members, nine have MG themselves.

"A lot of people go undiagnosed for years," Gallagher said. "In the early days, people died from it. Now people live with it and most live for many, many years.

"The key is that you have to come to an understanding of just want you can do and can't do. If you feel yourself getting weak, you have to stop and rest. And by rest, I mean you have to stop what you're doing and go to bed. If you rest, you can recharge and wake up feeling ready to go again the next day.

"Some people are resilient with this disease and some are not," she added. "We even see cases where patients go to remission. Every single person is different."

One of those who lives with the disease is Gallagher's administrative coordinator and treatment center receptionist, Donna Kalisek.

Kalisek, 59, was diagnosed with MG 50 years ago when she was nine. She utilized the services of MGA's western Pennsylvania branch and, about 25 years ago, began working for the local organization.

Kalisek has experienced most all of the symptoms, including droopy eyelids, double vision, lack of peripheral vision, general muscle weakness and spent years in and out of hospitals. The Butler County native enrolled in Butler County Community College, but after a semester developed pneumonia and was forced to drop out.

She makes many contributions in her role, but Gallagher said that perhaps the greatest is the way she greets visitors and patients to the organization's headquarters with warmth and understanding.

"Donna is amazing," Gallagher said. "I think a lot of our patients see her and what she has overcome and they think, 'if she can do it, I can do it.'"

Kalisek said that even on the worse days, she keeps a smile on her face.

"So much of dealing with MG is about keeping a positive attitude," she said. "I'm a big believer in that. I feel like my role here is more than to just answer the phone or help with fundraising, I am here to give hope and support. I spent years just trying to stay alive and I think I've made the best life that I can for myself.

"Sometimes I think maybe I should retire," Kalisek said, adding with a laugh, "but they won't let me."

Like McRoberts, Kalisek says she has to listen to her body. She said while she does not really experience pain, the muscle weakness is ever-present. She is unable to drive because of her vision problems and said she never married or considered having children.

"I've always been too busy taking care of myself to think of trying to care for someone else," she said. "Honestly, it would have been unfair. I have a large circle of friends who are my life.

"I usually have good mornings, but as the day goes on, I start to wear down," Kalisek added. "When evening comes, I have to start thinking about going to bed. When I rest, I can recharge."

One thing Kalisek says she always makes time for is her love of baseball and the Pittsburgh Pirates. She lives near PNC Park and purchases a 20-game package each year, riding to games on a scooter and taking advantage of handicapped seating.

"I have MG, MG does not have me," she said. "I try not to sit in a corner and watch life go by. I am a happy person. I just do the best I can with what God gave me."

McRoberts agreed.

"Life is not bad now, it is just different than it was before," he said. "I am very thankful that I am still here and that hopefully I am able to make a difference for people in the same situation as me."

Source : http://www.timesonline.com/community/leanonthem/you-re-not-in-this-alone-myasthenia-gravis-patients-support/article_4f5f2e94-4704-11e7-a460-53e2fb59ed86.html

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