MS Support Group Celebrating Milestone

Since 1998, Multiple Sclerosis Resources has been assisting persons with MS live a better life

By Stefan Yablonski

Multiple Sclerosis Resources of Central New York, Inc., was developed by a group of concerned individuals who felt persons with MS needed additional assistance to help them meet the daily challenges of living with a chronic disease.

The 501(c)3 nonprofit was founded in 1998.

“This is actually our 25th year of service and it’ll be our 11th poker walk,” Annette Simiele, associate director, said.

“We have a regular 9-5 work day. For the most part we’re here Monday through Friday. As we’re doing events and things like that we get busier. We have already had a walk and a bowling tournament. And, we are an office of two people — so, we are very busy!” she added.

The annual Bridie Manor Poker Walk will be held Sept. 9, starting at 9:30 a.m.

Over the years, it’s raised more than $50,000.

“We’re not part of a large national organization — we’re a local agency,” Simiele said. “All the funds stay local.”

“[The Poker Walk] starts at the restaurant, Bridie Manor. People walk through downtown Oswego. There are seven different locations,” she explained. “They pick up a playing card and go to the next location. At the end, everyone comes back to Bridie Manor and I have volunteers there to see who has acquired the best poker hand. Then [owner] Larry [Lombardo] does like a picnic lunch.”

Lombardo is not just the host — he has MS.

“Larry, God bless him. His disease isn’t as progressive as some others’. He’s still a business owner, goes to work every day and manages his symptoms quite well and functions at such a high level,” Simiele said.

What is MS?

“MS is a progressive autoimmune disease of the central nervous system,” Simiele said. “It affects more than two million people worldwide. It makes your immune system attack the protective sheath surrounding your nerves [called the myelin sheath] — and this causes nerve damage. It affects the brain, spinal column and optic nerves.”

Symptoms can vary from very mild to very severe where maybe a person has to use a wheelchair or they’re bedbound, she added.

It’s not a terminal disease, she said.

Multiple sclerosis isn’t generally considered life-threatening. Most people will live a normal lifespan. It’s chronic and progressive, she added.

“Their life expectancy isn’t really any shorter than a person without MS,” she said.

One study found the average life expectancy for people with MS is 76. In 2019, the U.S. life-expectancy averaged 78.8 years and in 2020 it declined to 77.3 years, primarily due to COVID-19.

Many people with MS may live for 25 to 35 years or longer after diagnosis, she said.

“A lot of our clients — we have 1,500 of them — I’d say a good population of them do feel isolation because some of them do use a wheelchair, they don’t drive any longer, they’re not in the workforce — maybe their family has moved away. So there are some isolation issues,” she said. “We try to combat that with support groups and all these different events for them to participate in.”

There are all sorts of different medications available these days — orals, infused, there’s injectable medications.

“We’re running the gamut of ways to get medication now,” she said. “Before 1993, there was really nothing; patients were told, ‘go home and manage the symptoms.’ But now we have a plethora of things to choose from.”

“I think people with disabilities in general are more widely accepted through education. Not everybody uses a wheelchair, not everybody

Annette Simiele is the associate director at Multiple Sclerosis Resources of CNY. uses a cane. Those people who do use adaptive equipment may not be affected by MS. Maybe they were in a car accident or maybe they had a stroke or something like that,” she added. “I think that as a nation, as a people, we are more tolerant now. Years ago, I don’t want to say stigma, but there was that curiosity about why somebody was in a wheelchair.”

Survival is improving. But chronic medical conditions such as heart disease, lung disease, depression or diabetes may lower life expectancy in MS. Talk with your healthcare provider for more information.

For more information, call 315-438-4790 or 1-800-975-2404.

The annual Bridie Manor Poker Walk to benefit the Multiple Sclerosis Resources of Central New York will be held starting at 9:30 a.m., Sept. 9 at 1830 Bridie Square Oswego.

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