A concert on Sunday in a Palm Harbor restaurant will benefit a member of the local band Ozona who has a rare disease.
By MATTIAS KAREN
© St. Petersburg Times, published June 24, 2000
OZONA -- Sitting in bed in her small mobile home, her arms shaking from the effort to hold up her knees, it's hard for Sue Ferry to recognize herself.
Just months ago, Ferry, 43, swam or ran every day. Today, she gets exhausted walking down the three steps to the kitchen. And when she does, she can't feel her feet under her.
Ferry, lead singer of the local band Ozona, has been diagnosed with Guillain Barre syndrome, a rare inflammatory disorder that attacks the nerve cells outside the brain and spinal cord. In severe cases such as Ferry's, Guillain Barre syndrome affects a person's ability to move and breathe.
Now Ozona's other band members, a local restaurant and three other bands are teaming up for a benefit concert to help Ferry and her family. It is scheduled for 2 p.m. Sunday at Porterhouse Grille & Bar in Palm Harbor and will feature the bands Ozona, Authorities, Tribal Vision and Delayed Reaction, Ozona's manager Reggie Hall said. Admission is $5.
For the past 25 years, Ferry has been a professional singer. Since 1997, she has performed crowd-pleasing versions of White Rabbit and Rhiannon with Ozona on the local bar scene.
It's how she has made her living, going from microphone to microphone, as often as five nights a week, never making much money, but enough to sing one more night.
Ferry's insurance covers most of the treatment costs, which are expected to exceed $15,000, but co-payments are adding up for the many medications and steroids she must take. Her husband, Ken Risser, is working two jobs, but they are at the point where they have to choose between food and rent, Ferry said.
A raffle will also be held at the benefit. Winners will get a compact disc with a live recording from one of Ozona's concerts. The bands are playing for free, and the CDs have been donated by Studio 420 in Tarpon Springs.
"It's an everybody-helping-everybody kind of thing," said Jeff Erickson, owner of Porterhouse Grille & Bar. Erickson said he expects at least 200 people to show up for the event.
Hall said he hopes to raise at least $1,000. For Ferry, every bit will help.
"I'm blessed to have people around me who recognize (my financial situation)," Ferry said. "It really touches me."
It was about 31/2 months ago that Ferry started noticing something wrong. It started as a tingling sensation in her feet. The tingling quickly became numbness. Thinking it was poor circulation, Ferry said she started adding more laps and miles to her swimming and running. But the numbness wandered up her legs to her knees. Then she started feeling it in her fingers, moving up the arms.
But Ferry kept putting off going to the doctor until the numbness hit her tongue and throat. And when she went, her doctor didn't know what was wrong -- only about 350 cases of Guillain Barre syndrome are reported worldwide every year. Ferry was told to visit a neurologist the next week.
A friend of Ferry's who is a nurse was visiting at the time. The friend, who had been treating a Guillain Barre syndrome patient for years, recognized the symptoms and told her to visit the neurologist the next day. She did, and was diagnosed with the disorder. The next day, the inflammation hit her so bad she couldn't walk.
Since early April, she has spent 30 days in the hospital on three trips. Doctors replaced much of her plasma in order to pull out the virus. She also received intravenous immune globulin, a common treatment for neurological diseases.
She's now doing better, and hopes for a full recovery. Most Guillain Barre syndrome patients recover, but it can be fatal. No one knows how the virus is attracted, but in a majority of cases, the patient has recently suffered from a severe cold or flu. Ferry said she had "the cold from hell" for more than a month this winter.
Today, she spends her time in bed. Her only exercise comes from about three trips to the kitchen a day. The virus affects her eyes, too, so she can't read. A small television helps kill the time, although she's "sick to death of soap operas."
Ferry has lost feeling in her feet, she said, and can feel tingling sensations across her body. Sometimes when she puts her hand on her calf, she can feel the touch on her thigh, and vice versa. Her fingers, she said, feel like they've been rubbed raw.
"I miss the feeling of petting my cat and feeling softness," she said. "I feel like I'm rubbing sandpaper."
Her son, Anthony, 19, who's also a musician, makes her breakfast every morning before going to his day job. She said being at home with her son and husband has made the recovery a lot easier.
"Without them, I would be really sunk," she said.
Band members also visit a lot. Her husband, who is an electrician, handles the sound for Ozona, and when the band comes to pick him up, it's hard to see them go, Ferry said.
But Ferry hopes to be back on stage. She has even written about her experience. She's hoping to use the song, called A Funny Feeling, to raise awareness of the disorder.
"I don't have a lot to offer, and I feel like I've never had a lot to offer except my voice," she said. "And if that's what I have, I want to use it."
- Mattias Karen can be reached at (727) 445-4243 or at email@example.com