Nov 18, 2002
By JULIA FERRANTE
It started with fatigue to the point of exhaustion. Debbie Sneddon would lie on her couch and a weight would come over her like a pile of wet sand.
Later, when she was driving home from work, the former auto insurance claims adjuster noticed she was losing her depth perception. And then there was the tingling in her arms and legs.
But the symptoms came and went. Doctors prescribed vitamins and exercise and diagnosed depression.
"I was scared to death," Sneddon, now 46, said. "After 20 years of problems, it just got to the point where I thought, `I've got to do something.' "
In January, a neurologist finally ordered an MRI, and Sneddon was diagnosed with multiple sclerosis.
Sneddon's story was familiar to the women who met for the first time Wednesday at the Ministry of HOPE, or Happiness Optimism Perseverance Empathy, Christian support group for people with chronic illnesses. Sneddon of Zephyrhills organized the group after she discovered another obstacle in her illness: No local support group.
"I was going to have it for people with MS, but then I found out there are other people with chronic illnesses looking for support groups," Sneddon said. Those who attended the first meeting all have MS.
A neurological disease with visible and invisible symptoms, MS strikes most often between ages 20 and 40, said Laura McCatty, a registered nurse from Tampa who led the first session of HOPE. Two- thirds of those living with MS are women, and most were diagnosed in the prime of their lives.
"These are child-bearing years," McCatty said. "Most people are working.
It can cause a lot of unknowns."
Getting Through The Holidays
Wednesday's meeting focused on methods for coping with holiday stress. But participants also shared stories, observations and humor about their common illness.
"Before everyone knew I had MS, they thought I was drunk all the time," said Michelle Ballinger, 37, of Wesley Chapel. "After I was diagnosed I denied my symptoms for years. I was 27. I didn't want to deal with it."
Ballinger joined an MS support group once before, "but everyone just whined," she said. The HOPE group is different.
"I want to learn things," she said. "This is wonderful."
Cindy Piscioniere, 60, of San Antonio was diagnosed earlier this year but believes she had symptoms of MS for 40 years. Piscioniere's daughter Joy also has MS but was diagnosed 14 years ago.
"We would walk together and fall into each other," Piscioniere recalled. "I told her, `It's either you or me.' "
It turns out both had developed the classic "clumsiness" that comes with the breakdown of nerve tissue from MS.
Piscioniere encouraged others in the group to keep passionate about life and to manage their illness.
"I feel like I can help other people," she said. "My daughter and I help each other, and I know a lot about MS."
The group compared notes on pool yoga, holistic herbs, Betaseron shots and autoinjections. The Betaseron shots are a newer alternative to rigorous steroid treatments that kept some MS patients hospitalized for a month at a time.
The women discussed struggles with insurance companies and employers and their respective realizations they no longer could work. They talked about failed marriages and doctors who told them they were imagining things. They also shared coping strategies.
"One of the hardest things for me was to admit that I was depressed,"
Sneddon said. "There is a stigma to MS, but there's a real one to being
depressed. Now I know it is part of the disease, and I finally told my
doctor, `I need something for this.' "
Good Days, Bad Days
Ballinger said the income from Social Security disability benefits makes her feel more independent because she's making a financial contribution to the household.
"I also clean the house and make dinner, even if it takes all day. That helps get rid of my guilt," she said.
With MS, some days are good, some bad. And the invisible symptoms make it difficult for those on the outside to understand. Each woman had a story about being yelled at for parking in a handicapped parking space, for example.
Even family members are not always aware.
"I have a large family, and during the holidays I have a hard time
maneuvering across the room without tripping and being clumsy," Ballinger
said. "I don't want to sit in one place. To me, being in large groups
of people, that's very stressful."
Reporter Julia Ferrante can be reached at (813) 779-4613.
© 2002, Media General Inc