Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: WEDNESDAY, October 5, 1994 TAG: 9410050074
SECTION: EXTRA PAGE: 1 EDITION: METRO
SOURCE: RICHARD FOSTER STAFF WRITER
DATELINE: LENGTH: Long
"It's really frustrating. I park in a handicapped space, and I have people stop and ask me, `Why are you parking there?' They think I'm using my grandparents' car."
Smith is an "invisible MSer." She suffers from chronic fatigue but doesn't show any outward signs of MS unless she's having an outbreak of symptoms, called an episode or exacerbation.
She lives in Roanoke and belongs to a support group for "invisible MSers" called Gee ... But You Look So Good, sponsored by the National Multiple Sclerosis Society's Blue Ridge Chapter. The support group gives members a chance to talk about their fears and frustrations and to educate each other about possible symptoms. Members also believe that it is helpful for people who are newly diagnosed to see people in the support group who are functioning and mobile.
The Blue Ridge Chapter has 1,100 members from 45 counties in Northwest and Southwest Virginia. About 500 of those members are in the Roanoke Valley, Bedford and Franklin counties and Lynchburg. Those numbers place the Roanoke area well above the national average, and the society classifies it as a "high-risk MS area."
This weekend, the chapter will hold its biggest annual fund-raiser, a home tour at Smith Mountain Lake. The 1994 tour showcases 10 homes, including "Random Hall," an English cottage-style home with a lap pool in the living room and master bedroom. And for the first time in the event's three-year history, homes on the tour can be accessed by car or boat.
Since 1991, the tour has raised almost $280,000 for the Blue Ridge Chapter, allowing it to provide members with a wide range of services such as literature, medical equipment, athletic therapy, personal grants and self-help groups like Smith's. The tour earned the National MS Society's award for "most innovative volunteer-driven fund-raiser" last year.
But organizers hope that the tour will do more than expose people to pretty houses. They want to encourage people to learn more about multiple sclerosis, a disease that few understand and many confuse with muscular dystrophy.
"When we survey people with MS, one of the things that is of the highest concern to them is the lack of public awareness" about the disease, said Fay Painter, executive director of the Blue Ridge Chapter. "The need for services for people with MS runs the whole spectrum. And public awareness is tied into the funds generated for those services."
Those with MS say that the disease lacks a recognizable face because it is different for every person that has it. MS symptoms vary from episode to episode, and even the severity of symptoms varies in individuals.
"That's the most devastating part of MS," Painter said. "The element of unpredictability."
A disease of the central nervous system, MS destroys myelin, a fatty tissue that covers nerves and helps the brain send messages to limbs and muscles. After an episode, a scar is formed where the myelin was destroyed. Permanent loss or reduction of body functions can occur if the scar is deep enough or enough myelin has been destroyed.
No one knows what causes MS. The disease usually strikes people between the ages of 20 and 50, and women are twice as susceptible to it as men. It's not contagious or hereditary, but some families are predisposed to it.
Two-thirds of the 350,000 Americans diagnosed with MS are "invisible MSers": No one would know they have the disease from just looking at them. But symptoms strike capricously. Episodes can strike at any time and may persist minutes, months or years. Symptoms - such as reduced vision, speech or mobility - may be temporary or permanent.
"Each day we wake up, we don't know what the day will bring us," Diana Smith said at a recent monthly meeting of the support group held at the Ronald McDonald House in Roanoke.
Smith, 41, was diagnosed with MS seven years ago. She used to work with children with behavioral problems before claiming disability from the Social Security Administration. She is married and has two teen-age sons.
Barbara Green, 43, a supervisor of support services with the Roanoke Department of Social Services, was diagnosed with MS in 1978 at age 27. She is a founding member of the support group, which started two years ago and continues with new-member referrals from the chapter.
Like Smith, Green suffers from fatigue. Occasionally, she needs to use a cane to walk. She joined the support group to help her youngest brother, who was diagnosed with MS a few years ago. Their father also had the disease.
Robert Shepherd, 33, a former cook from Roanoke, was diagnosed in 1991. He is on disability welfare and works part-time at a pharmacy. His MS relapses, but he is slowly losing some mobility. The Blue Ridge Chapter helped him find sources for grant money to buy an electric scooter for when he is unable to walk long distances.
He recalled that at one meeting last summer, he was in the midst of an episode and unable to walk. He came into the "Gee ... But You Look So Good'' meeting in the scooter.
"I said, 'I guess I don't look so good,' but in fact I tried to encourage new people. I said, `Don't let this scare you. Chances are it won't happen to you, and if it does, you've got tools to help you.'''
"This group is great. You identify with people who have gone through different episodes. If you go to the support group, there's probably always somebody there who's gone through the symptoms you have.
"It really lessens your fears and anxieties. The more information I can gather on my disease, the better I feel I know how to deal with it."
A lot of the support-group meetings are spent trading methods of dealing with MS. Diana's toes curl when they go into her shoes, and shoestrings hurt her feet. Bladder problems suffered by many people with MS also contribute to leg pains. She and Robert compare brands of shoes and talk about the advantages of Velcro-straps and slip-on shoes.Someone asked about optic neuritis, a loss of vision that is experienced many people with MS.
Wendy, 38, asked to be identified by her first name only. She has had it four or five times in both eyes, but not at the same time.
"It's like you wake up in the morning and somebody pulls down a fog curtain or you're driving down a road and the windshield wipers aren't working."
They complain about all the medicines and steroids that they must take to manage their symptoms. Then there are the side effects. "The steroids keep me up all night sometimes," Robert said. "My dresser looks like a pharmacy," Diana grumbles.
They talk about people's lack of understanding. About public places that don't offer places to sit or people who question their using handicapped facilities.
"With resting and such, I can accomplish things, but I have to make accommodations," Green said. "Parking close allows me to walk to the store. If I had to walk the entire parking lot, I might not be able to complete my shopping."
Many agreed that the day of the meeting, a cool, windy early fall day, had been good for them. Heat brings on episodes of MS, so many programs and meetings for MS patients are canceled during summer.
Talk among group members was very hopeful for a swimming therapy program sponsored by the chapter that will start this month. And a chapter-sponsored symposium last week about new treatments for MS also was a topic of discussion.
Diana spoke about taking a newly approved MS drug called Betaseron. She said she hadn't had any episodes since starting the drug, but she was having flu-like side effects. With the help of a computer bulletin board on Prodigy, she found out from other Betaseron users that Tylenol PM helps alleviate some of the problems.
And that helps her with peer counseling for other local Betaseron users, a job she was trained for during four workshops paid for by the chapter.
Judy Diekow also attended the workshops. Diagnosed with MS seven years ago at age 46, she has learned to overcome her own fear and help others through the difficult initial stages of diagnosis.
In mostly one-on-one telephone conversations, Diekow says, she will "listen because they're scared when they're first diagnosed. They want answers, and sometimes they just want to vent." From her experiences with counseling her peers with MS, Diekow decided she wanted to be a professional counselor. Now she's studying toward that goal at Virginia Wesleyan Community College..
Green also is a peer-support counselor for the MS Society. She said counseling gives "invisible MSers" like herself, who don't need as much money or services from the chapter, a chance to help those who need more.
After all, she said, "invisible MSers" also know that "if we ever need other services the Society has, it's available.
On line services/support group for people with MS:
Compuseve: Under "Disabilities," choose MS folder for several topics and live cinversation.
America Online: Choose keyword "NMSS" for a National Multiple Sclerosis Society database and reference network.
Prodigy: Jump, Type in "medical support bb" and look foir "multiple sclerosis" under topics.
Internet: For conversations, support group information and literature to download, there is a usenet server with the address "alt.support.mult-sclerosis"
by CNB