Friends unite to form support group

A wrong number and renewed contact with a friend suffering from a related condition led Gina Lisella to form a support group to help others as well as herself and her friend John "Chet" Michalik deal with the difficulties of multiple sclerosis and Parkinson's disease.

"There are a lot of people with multiple sclerosis that need a support group, and a few months ago I decided it was time to start one here," said Lisella before their first meeting at the Summit Hill Heritage Center last month.

Lisella is a licensed practical nurse and it was during her work with patients about nine years ago she realized things were not right.

"I worked with people who had MS and I started to realize that I was sharing the same symptoms as the people I care for," she said.

Multiple sclerosis is a progressive neurological disease that affects the brain and spinal cord. Lisella said her earliest symptoms were changes in the feelings in her hands and her arms.

She said MS affects many different things including vision, speech and walking.

"While I recognized the symptoms almost nine years ago, I was only formally diagnosed six years ago."

Diagnosed with Parkinson's disease

Michalik first noticed he was having a problem in 1995.

"I noticed my hands were shaking at work while I was eating lunch one day," he said.

He was diagnosed that year with Parkinson's disease which is a neurological disease that shares many symptoms with MS, although each disease affects different areas of the nervous system.

MS causes a breakdown of the sheath that protects the nerves which eventually causes the nerve cells to die. Parkinson's disease is a chronic progressive degeneration of the motor system caused by the loss of dopamine neurons.

Both have similar symptoms including tremors, problems with balance, vision problems and speech problems.

The symptoms for MS tend to show up on both sides of the body while the onset of Parkinson's disease may only have tremors on one side.

Also, it is possible for MS to go into remission, but Parkinson's tends to be progressive.

Michalik said by the beginning of 2012, his disease was at a critical state.

"My medications were at their limit," he said.

By that time though, there was a treatment he decided to try. He went to University of Pennsylvania to receive deep brain stimulation.

This is a procedure in which a computerlike device is implanted in the brain and used to counteract the motor symptoms of Parkinson's.

The device is adjusted twice a year. For Michalik, it gave him a fresh start and relieved the tremors that made it difficult to function.

He also got involved in an exercise group called "Get Up and Go" sponsored by Lehigh Valley Hospital, which is designed to address the physical needs of people with MS and Parkinson's. Michalik said he wishes the class would be offered nearby.

"It is critical to our health to have regular exercise like this group offers. I would like one of our local hospitals to help us."

Advocating

for others

Since being diagnosed six years ago, Lisella has been an advocate for those who share her disease.

Two years ago she was recognized for her work when the National Multiple Sclerosis Society invited her to their annual conference in Washington, D.C., to act as an advocate.

While there she met with U.S. Reps. Matthew Cartwright and Chaka Fattah, as well as a staff member for Rep. Charlie Dent.

"I was invited to speak because of my experience with MS and what it means to me."

Lisella said there are walks that are used to raise money for research and educational programs people can participate in to help raise research and treatment money for the diseases.

There are also support groups, but when she and Michalik were looking, the closest ones were in Stroudsburg, Bethlehem and Allentown for MS, while Michalik's closest group was in Philadelphia.

He said he used to travel to Philadelphia with a friend to attend the meetings, but when their conditions worsened, the trips ended.

Michalik and Lisella were friends growing up and they reconnected when they learned they each were suffering from these diseases.

The more they talked, the more they became convinced that a support group would be a benefit to the area to help themselves and others deal with these debilitating diseases.

"She has been an inspiration to me from the get-go," said Michalik, to which Lisella added, "You have too, Chet."

Wrong number,

right time

Lisella had thought about forming a support group several times in recent years, but a chance wrong number convinced her it was time.

"I was calling a restaurant to get information about an MS seminar, and I accidentally dialed a wrong number. The woman who answered the phone asked who I was looking for and I explained that I was calling about a seminar," Lisella said.

"I could hear her voice break on the other end of the phone and she admitted she too had MS. She cried as she told me she had no one else to speak to and she needed to talk to someone, so I listened to her."

Lisella considered this a sign that it was time to form the group.

She and Michalik decided to form the group and reached out to the Summit Hill Heritage Center President Deb Ranck.

"A friend suggested I call her," said Lisella.

Support group

gets a home

Ranck immediately accepted the proposal of the group and its mission.

"This is wonderful and a part of our mission," Ranck said. "It is the right thing to do."

The group had its first meeting recently and Lisella said she wanted the group to be a safe harbor.

"I want people to feel they can participate, sit and listen or gather information," she said. "It's a safe place for people to be so that they know they are not alone. Our goal is to help each other learn to deal with our illnesses and to learn how to help each other and empower each other."

The group meets at the Summit Hill Heritage Center at 1 W. Hazard St., the second Sunday of each month from 2 to 4 p.m. with the exception of May.

"This month we will meet on May 18 (because of Mother's Day), but the rest of the time we meet the second Sunday of the month," Lisella said.

There will be no meetings from December to February as well.

Michalik hopes one outcome from the group will be that one of the local hospitals will finally start an exercise class to help him and his fellow group members will get the exercise they need to slow the progress of their disease.

For more information about the MS and Parkinson's disease support group, call Lisella at 570-645-5454 or Michalik at 570-645-9306.