All About Multiple Sclerosis

More MS news articles for October 2002

Limitations no bar to assisting fellow MS sufferers

October 8, 2002 Tuesday

The walls of the finished basement Joseph Neary built teem with photos of family and his life - -before and after multiple sclerosis.

"Every wall has a meaning, a story to tell," he says, proudly pointing out highlights as he maneuvers about with cuffed canes.

On one wall there is a collage of earlier years when Neary, now 53, played base guitar and sang in Starbound, a lounge band. "I did a show with the Four Tops and wrote songs," he smiles, remembering those years in the Sixties. From more recent years are plaques and awards for work he has done as a volunteer for those suffering from multiple sclerosis and strokes.

Included are a "Making a Difference" award he received last May from the Russell Berrie Foundation -recognition for years of work as a peer counselor and support group leader for the National Multiple Sclerosis Society of North Jersey, and for forming seven years ago the 50-member strong "Mighty Strutters" walk team (he's captain), which raises thousands of dollars each April for the disease.

Neary is also a board director of a swim group for those suffering with MS and a community volunteer with the Bergen County Division on Disability Services.

"He's a happy-go-lucky guy," said Leo DePinto, division director. "It's never 'poor me' with Joe."

Said Pat Evertz, chapter services coordinator for the national society: "He's a great advocate for us, someone we rely on in a number of ways. Joe is an inspiration to others."

Neary admits he was in denial for a long time after learning he had the disease. Then he questioned his plight. "Did I think, 'Why me? What did I do to deserve this?' Every day I did," he said.

As the disease slowly progressed, a courageous attitude evolved.

"I now appreciate life and people for what they go through more," he said. "I appreciate the things I can't do as well as I used to, and I'm glad that I can do what I'm doing. There are a lot of people worse off than I am, and my heart goes out to them. I've got friends who are bedridden or can't speak well."

Neary can walk only 30 feet with his canes and uses a motor scooter for everything else, such as shopping with his wife. His car is handicapped-equipped so he can drive with just his hands.

"I haven't used my feet for 11 years for driving," he said. "But I wouldn't think twice about driving to Pennsylvania. The one thing that bothers me is not being able to pick up [wheelchair-confined] people with MS to get them out of the house, to say, 'Let's go to lunch.'-"

Neary's spirit, motivation, and compassion -- despite his own struggle -- inspires others. No wonder the phone in his Fair Lawn home never stops ringing. "I get quite a few calls," he says apologetically, stopping to answer them.

Someone wants to talk to him about an upcoming seminar the society is holding on employment discrimination. Someone else is newly diagnosed and wants advice. Neary recommends a neurologist versed in MS.

"I've been through training courses which help me direct them to areas beneficial to them," he said. Others just want to talk and the upbeat, empathetic Neary is the perfect listener.

"When you're newly diagnosed, it knocks you for a loop," he said. "To be in the productive years of your life and you're told you're not going to be able to live like you once thought is very hard."

In the peer support group, which meets in a Paramus church, MS patients discuss issues they deal with on a daily basis, including eating, dressing, bathing, marriage, and attitude. They talk about how they used to do things and how they can do them now.

"The good thing about a support group is that everyone has a common interest," Neary said. "They're not afraid to talk about their fears and their needs. The disease affects everybody differently. Everybody's got their own worst experience with the disease."

Nearly all hear people say, "I know what you're going through."

"But you can't," Neary said. "You're not there. That's why the group is so good. Everyone really does understand."

What is the hardest thing about MS, an unpredictable disease? "Not knowing what to expect, when something is going to happen," said Neary. "Some days are better than others."

Neary first learned he had the disease in 1976 when his entire left side would get numb. He was 26 and he and his wife, Rita, had three children -- now 27, 29, and 35. Neary continued to work until 1991 when he was laid off due to cutbacks. He looked for other work, but they wanted to pay him one-third the salary he made before for doing the same thing.

The disease progressing (he lost his central vision in one eye for four months and now uses a cane), his doctor advised him to go on Social Security. Only 41, he thought he was too young. The doctor suggested he volunteer to keep occupied.

Neary found he felt good doing it. "It gave me a sense of responsibility, of worth," he said. "It makes me feel good to know that I'm getting through to people suffering from this devastating disease by sharing my experiences and the experiences I've come to understand from talking to other clients."

His legs have been his biggest problem.

"The strength is not there anymore," he said. "I need assistance to walk."

His greatest strength: family. "They're everything to me," said the grandfather of four. "My wife is the best support I could have."

Neary prefers to look at his assets, not what he's lost. "Seeing physically challenged people makes me feel, 'Why should I complain? Why shouldn't I help if it's just talking to them, just listening to what they are going through, trying to make them laugh?'-"

What hopes does he have? A cure would be wonderful but until then: "Waking up to sunshine and still having all my friends I've made through this ordeal."

Neary wants to continue to help others. "I'd like them to say that I was there for them when they needed someone," he said. "That's how I'd like to be remembered."

© Copyright 2002 Bergen Record Corporation