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All for one

Group unites those living with MS, offers support

August 14, 2012
By MICHELLE ROBBINS Tribune Chronicle (mrobbins@tribtoday.com) , Tribune Chronicle | TribToday.com

"All for one, one for all."

The famous motto of author Alexandre Dumas' fictional characters also fits the MS Musketeers.

When this group of people meets, they share with each other the available resources for people in the Mahoning Valley with multiple sclerosis.

Article Photos

From left, Cassandra Eden, Rita Chiodo and Jane Martin listen to a presentation at a recent meeting of the MS Musketeers.

But it seems their most valuable resource is each other.

"I'm always in such a good mood after a meeting," said Patty Granger of Boardman. "I get rejuvenated. It's the companionship and sharing."

Mike Clemons, 38, of Youngstown, started his journey with msworld.org.

Fact Box

When You?Go

WHAT:?21st annual MS Super Walk

WHEN:?10 a.m. Sept. 23, registration with food and beverages provided at 9 a.m.

WHERE: Wick Recreation Area, Mill Creek Park

Lunch is served after the 4-mile course

Walkers secure donations on a per-mile basis or flat sponsored amount. Prizes are awarded to walkers based on the amount of money they raise and turn in on Sept. 23.

For more information or to register, call 330-533-6772.

"There, I got so many answers," he said.

But Clemons doesn't recommend that the newly diagnosed take only the Internet route.

"They need to get out," he said, "I buried myself online at first."

Dawn Mitchell of Youngstown has been running the support group since 2005.

"Coming to group, people can give you an idea of how to handle it," Mitchell said. "Our group happens to be an extremely casual, friendly group."

Just this past Thursday, Cassandra Eden and Rita Chiodo talked about eyesight. They learned that the library will deliver audio books.

Jim Salata shared his thoughts on rollators (a walker you can sit on). This tall man recommends that anyone - large or not - gets the heavy duty kind.

The group members all agree it's important to have a doctor with a good attitude and who will take time with each patient, because there's no textbook case. Many of the them go to the Mellen Center at the Cleveland Clinic or the Oak Clinic in Green.

Salata, 60, of Youngstown, said he's happy with his local doctor, though, who he says tells it like it is. And size doesn't matter when it comes to an MS diagnosis.

"You're a big guy, you can handle it," was the prevailing thought, Salata said. "I was like a big baby. It took a couple years to get a grip on it."

Granger said she's recently discovered the value of having physical therapy, doctor visits and even medical tests done at home. Going out for those, using the RTA bus or getting a ride, is a big deal.

"That's like a half-day ordeal for me," she said.

Chiodo demonstrates her walking stick - a product she gets from an athletic company and not a medical supply store - and how it helps with her balance and allows her to take several steps at a time. Clemons prefers braces with arm bands.

Brian While of Lowellville, at just 35 years old, talks about dealing with the heat. In addition to his "little dog" being a big help in coping with his MS, so is the support group.

"The whole point is, none of our friends or family have MS - just us," he said.

The Musketeers are affiliated with the Ohio Buckeye Chapter of the National MS Society.

Also serving Trumbull, Mahoning and Columbiana counties is the Multiple Sclerosis Services Agency. Carol Danus of Canfield, who was diagnosed 43 years ago, is the agency's board president.

Danus encourages anyone in the area diagnosed with MS to contact the agency. New registrants will be asked what they need.

"We like feedback from our clients as to what they'd like above and beyond what we already offer," Danus said.

For Eleanor Bell, the service she needed was water therapy.

Bell, of Jackson Center, was diagnosed with MS in the spring of 1967. Her first attack occurred when her children were (rounding to even numbers) ages 1, 2, 3 and 4.

She spent 15 years in wheelchair. In 1981, the MSSA started a water therapy class at the YMCA.

"God bless Michael Shaffer," Bell said.

Shaffer, now the branch director at the YMCA of Youngstown, said at the time he and the agency director researched other communities and found movements to do in the water.

"What we saw happen was because it's so hard for them to get exercise once they get into a wheelchair, we used the lift to get them into the water," he said.

He said once they get in at shoulder-depth level it floats their body weight.

"What they can do in water is so much more than what they can do on land, because the gravity is gone," Shaffer said.

He said Bell saw dramatic benefits from the program.

"Two months later, I was able to walk," Bell said. "I still think it's a miracle."

In addition to offering more support groups and an MS clinic, Danus said the agency has a loan closet.

"If somebody calls for a wheelchair, they can use it as long as they want," she said.

Both women said the agency and its members have been a big benefit to them.

"The more I talked about it, the more I accepted it," Bell said. Her husband, Joe, was a big support, too. Although he did tease her a bit - if she was staggering, he'd ask if she'd been drinking again while he was at work.

"That guy has been 100 percent behind me," she said.

Danus said the MSSA serves almost 800 people in the tri-county area.

mrobbins@tribtoday.com

 
 

 

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