Neuromuscular disorder is topic of seminar

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After Kathy Clouse started working in a new nursing position in 1991, an X-ray of her chest showed a shadow. At the same time, she was having blurred vision and increasing difficulty speaking.

A neurosurgeon diagnosed her with the neuromuscular disorder myasthenia gravis, or MG, and a thymoma, a tumor, was found.

Parts of the cancerous tumor were removed as was a part of her lung and other tissue where the tumor had grown.

"I was horrified and could not believe it was happening to me," said Ms. Clouse, director of nursing and clinical education at West Penn Hospital of the West Penn Allegheny Health System.

She began taking medicine and has been able to work full time ever since. She regards her disorder as simply another challenge that has made her a better nurse and individual.

"I'm lucky," she said. "My eyebrow is droopy and a side of my mouth is droopy and I have some inability to move like I used to with my arms. When I'm tired, my speech and breathing are affected, and if I'm really stressed or I get a cold, it really wipes me out.

"But I've adjusted well," she added.

Ms. Clouse will share her story at the educational seminar on MG, titled "Finding Your Inner Strength," which will be held from 9 a.m. to 2 p.m. Saturday in the Magovern Conference Center at Allegheny General Hospital, 320 East North Ave., North Side.

It is sponsored by the Myasthenia Gravis Association of Western Pennsylvania, which is housed at AGH.

The event is geared to MG patients and their caregivers as well as anyone who wants to improve their wellness, balance and strength.

Among the lifestyle challenges faced by MG patients is continuing to get daily exercise.

"We have an educational seminar every year, but this is the first time with a fun and exercise slant," said Maree Gallagher, executive director of the association. "We felt these instructors have something to say to anyone interested in getting in better shape and feeling better."

Myasthenia gravis is an autoimmune disorder characterized by weakness and fatigue of voluntary muscles. It occurs when the body's immune system produces antibodies that mistakenly attack receptors in muscles.

MG is relatively rare, occurring on average in 30 per 100,000 individuals. It usually hits suddenly. While it strikes people of any age or race, it most often occurs in women under the age of 40 and men older than 50.

MG has no known cause or cure, but medicine may be prescribed.

Ms. Gallagher said as MG causes muscle weakness of the voluntary muscles, patients have a tendency to avoid exercise.

To address that, the seminar will include a zumba demonstration by KDKA news anchor Jennifer Antkowiak and a laughter yoga demonstration by David Russell.

"Laughter yoga is a form of gentle stretching and deep breathing and laughter exercises, and it's done for relaxation," Mr. Russell, a certified laughter yoga leader, said.

The sessions will not include running. Most exercises will be done while seated or standing -- or in the participant's mind.

"We pretend we are doing things like riding a laughter roller coaster, going up and down the hills laughing," he said. "The hills are done through our imaginations so we pretend we are drinking a laughter milkshake -- no calories."

Ms. Clouse, who will deliver her co-presentation with Mary K. Wehling, a nurse and director of professional practice at AGH, is eager to learn the exercises.

"It is important to keep moving," she said.

The cost for the seminar is $10 for MG patients and their caregivers and $20 for the general public. The fee includes continental breakfast, lunch and all seminar materials. Reservations: 412-566-1545 by today.


Margaret Smykla, freelance writer:


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