Local multiple sclerosis patient creates a resource for Berkshire County
NORTH ADAMS -- Wende Carver didn't know what hit her. At first, neither did her doctor.
It was 1993, and Carver was at home vacuuming when she lost feeling in her right side and collapsed to one knee. It only lasted for about a minute, and at the time -- while mystified -- she assumed it was a pinched nerve and went on about her day.
But it kept happening.
She went to her doctor a couple of weeks later and he attributed the episodes to symptoms of a migraine headache. But the episodes continued, so Carver sought further information, finally getting to a neurologist that confirmed through a spinal tap and a magnetic resonance image that she had multiple sclerosis.
For local folks with MS, there are not many resources in the form of information, nor is there much in the way of referral services to doctors or to other MS caregivers.
After struggling with the disease and getting frustrated in her search for information and services in the Berkshires, and seeing others with MS having similar issues, Carver decided to create just such a center for MS patients.
In 2006, Carver founded the Multiple Sclerosis Resource of the Tri-State Area, which advocates for victims of MS, provides information and education, offers support group sessions, aids in finding proper medical equipment for MS patients, as well as insurance and transportation to appointments. MS Resource serves individuals and their families in upstate New York, Western Massachusetts and Southern Vermont.
In fact, the annual fundraiser for Multiple Sclerosis Resource of the Tri-State Area -- its sixth annual gala to "Knockout MS" -- is on April 12 at Proctor's Theater in Schenectady, N.Y. News Channel 13 anchor Subrina Dhammi will serve as master of ceremonies for the gala which features dinner, dancing, and a silent and live auction. Tickets are $150 per person, or $275 per couple.
An estimated 400,000 people have MS in the U.S., although that number could be much higher since many have not yet been diagnosed. Women develop the disease at twice the rate of men.
While the active agent of MS is unknown, it is known that MS is an auto-immune disease in which the body's immune system attacks the localized sheathing of nerve fibers inside the brain leaving lesions on the nerve fibers. It tends to shift to different nerves, and as a result, different patients have different, changing symptoms making diagnosis a bit more complicated.
It can be very disconcerting for the victim.
"You could wake up one morning unable to walk, or you can't see," Carver noted. MS victims include Terri Garr, Montel Williams and the late Annette Funicello.
For those newly diagnosed with MS, the search for information is a pressing need.
"If you have MS, you want someone who knows all about it, someone who specializes in MS," Carver said. "There's just a real need for that."
At first, she had no idea what she was up against, and it took a good deal of searching and coming up empty before she connected with neurologists who could help.
"I had no idea about the things that are affected by MS," Carver recalled. "Many people don't know what it is, but so many people have it."
Today, with their offices at 85 Main St. in North Adams, MS resource provides information and contacts to MS patients and their families, and can put them on track to find the right medical equipment -- canes and wheelchairs for example.
Perhaps more important, MS Resource can provide information on MS support groups. There are also talks on physical therapy, nutrition and finding the right doctors. The agency will soon be bringing in an executive director and an office manager, funded through a grant from the pharmaceutical industry.
According to Dr. Keith Edwards, MS Resource's medical director and board certified in neurology since 1978, there are a significant number of people living with MS in Berkshire County.
"The support provided by MS Resource is built upon best practices and the latest research," Edwards said. "Like much of the Northeast, the Berkshires has a higher per capita prevalence of MS. We encourage the community to support the work of MS Resource."
In North Adams, an MS support group meets every third Thursday at 85 Main St., Suite 210, at 5 p.m. There are also support groups in Bennington, Pittsfield, Albany and Saratoga.
For more information on the sixth annual gala to "Knockout MS," log on to msresource.org or call Multiple Sclerosis Resource of the Tri-State Area at (413) 664-2011.
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