MS sufferers offer support

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By Christopher Brooke, Reporter

HILLSVILLE — Regina Dalton won't let multiple sclerosis get her down — and she's doing what she can for others, too, through a new support group in the Twin Counties.

"My personal motto is 'I have MS, but MS doesn't have me,'" she explained when talking about what led her to launch the Twin County MS Support Group. "I'm not going to give in to it... I have too much to live for."

Though her eyesight has worsened and her energy level has dropped, Dalton remains defiant.

The pianist for her church, Dalton copies and enlarges the songs from the hymnal so she can see them well enough to play.

What it took to arrive at the correct diagnosis of the central nervous system disorder for Dalton sounds like an ordeal.

Before medical personnel ordered the all-important MRI that provided a conclusive answer to her health problems, they shuttled Dalton between doctors, hospitals and emergency rooms.

Once, an anxious doctor even had her flown by a helicopter to another hospital for more extensive tests — he felt her condition was too serious to wait for an ambulance to take her.

In the end, it took from April to June — through recurring spells, several exams and hospital visits and scans, weeks of missed work and her first-ever ride in an aircraft — before the doctors realized Dalton is one of the 400,000 people in the United States that have MS.

Dalton at first chalked it up to exhaustion when everything went blank for her once in the shower.

The first telling episode occurred when Dalton was sitting up with her young grandson at Brenner Children's Hospital in Winston-Salem, N.C.

He was being treated for pneumonia and severe dehydration at the facility, and she was trying to sleep in a "hospital recliner" with limited success.

Things went blank there for a time when she was getting cleaned up one day. She also noticed a numbness down her left side.

Some features of MS make it difficult to detect.

One is the nature of the symptoms, which could point to other health concerns.

These include muscle stiffness or spasms, vision problems, weakness or unusual tiredness, numbness or tingling, staggering or loss of balance, shaking, poor coordination, loss of bladder or bowel control, problems with memory or concentration, speech or partial or complete paralysis on any part of the body.

Dalton described some of these symptoms to doctors. One possibility that occurred to them is that Dalton had a stroke.

The numbness made her co-workers think that she had a slipped disc, so they advised her to go to a chiropractor.

She has a sense of humor about it, but on occasion other people wonder if the staggering caused by the disease wasn't instead due to drinking alcoholic.

Also in Dalton's case, she has the "relapsing-remitting" type of MS, meaning the symptoms come and go.

Once they pinned down the cause, the doctors prescribed medications to handle her symptoms. There is no cure for MS.

In June, doctors pumped steroids into her body through an IV. Dalton said her numbness and other symptoms have been relieved somewhat.

She now takes an injection every day to manage the disease.

"It is very, very expensive, to the tune of almost $26,000 a year," she said.

Dalton has gotten help, fortunately, for her medications from the National Organization of Rare Diseases.

Copaxone she takes to help with the symptoms.

"I will receive a year's supply of the Copaxone for just the cost of shipping and handling," she said. "This is income-based, and because I have no insurance and I had huge medical bills, I was able to get my medicine for free."

Moral support has come from the Blue Ridge Chapter of the National Multiple Sclerosis Society, which has a support group meeting in Christiansburg.

Dalton liked it so well she approached coordinator Kristen Conklin to start a support group for the Twin Counties.

Dalton's volunteering and the training that followed made the support group possible.

Joining the support group helps members learn about ongoing research, receive updates about managing symptoms and share thoughts about their personal challenges due to the disease.

She knows there are 30 people in Carroll County who have joined the national MS group. An average of 10 people have attended the two local meetings, so far.

Members don't claim to have all the answers.

"Just to have a sounding board helps," Dalton said. "It's a self-help group, it's also a support group."

Reva Horton explained that she had symptoms off and on for about 20 years, but she didn't think about it because the symptoms had always gone away.

But after an attack during a trip to Disneyland in California, Horton couldn't ignore it any longer. The attack required her to ride through the theme park in a wheelchair.

She saw her doctor after returning home.

Attending the support group boosts her morale, Horton said. Members "get together and share the hope we have for a solution. It's just another step in trying to keep things going and staying up on the latest information."

Those with MS need to stay busy, stay as active as possible and keep hoping for a cure to come.

Brant Bottomley, who has been attending the group, agrees.

The ability to talk to other people going through the same issues is a relief in itself.

"Mostly, it allows people to talk to each other and vent about what they're going through," he noted.

There's a lot of help offered, and national and local chapters channel the information and advice to their members. Bottomley said the information is focused on how to cope with symptoms, how to manage the disease with the goal of leading a normal life.

Support group members want others to know about the disease, too. Earlier detection will help sufferers lead a better life.

They also want to promote group activities, such as the upcoming Blue Ridge MS chapter walk in Radford at Bissett Park on April 4.

Dalton said donations for the walk would be appreciated. Proceeds will go to research to find a cure for the disease.

Twin County MS Support Group

The Twin County MS Support Group meets the second Thursday of the month at 7 p.m. at the Carroll County Public Library. It's open to those with the disease, family, friends and coworkers.

For more information:

Call Regina Dalton at (276) 766-9228

or e-mail her at punkin_39@hotmail.com