ALS can't quite stop ex-dancer


HER STORY: Dancer Clarice Roby is coping with the restrictions of ALS.


By AMANDA BARON and SEAN D'OLIVEIRA, University of North Florida


Clarice Roby, once an avid dancer, bopped in dance clubs and at competitions up and down the south Atlantic coast. Now she uses a wheelchair much of the time, and the arms she once twirled across the dance floor are nearly useless.


Roby, 66, has ALS, amyotrophic lateral sclerosis, known as Lou Gehrig's disease, a fatal disease that causes muscle weakness. The nerve cells responsible for controlling muscles die, ceasing to control them. The muscles gradually weaken, then waste away.

Roby explains it like this: "The brain is the general and your fingers and arms and everything are the boys; the general gives the orders, but the boys don't pay attention."

Her first symptom of ALS appeared in 1991 after an injury to her shoulder, although she wasn't diagnosed until years later. She noticed her arms grow weaker and weaker until she finally lost movement in them. Roby can walk, but without movement in her arms she has trouble balancing herself and sometimes falls. A fall in October left her with two black eyes and three broken ribs.

WHAT WOULD HELP: She needs her home to be made wheelchair-accessible.

She misses the movement of her former life. The dancing as a member of the Jacksonville Beach Boppers Association. The dance contests she competed in up and down the Atlantic Coast. The nights of card playing with good friends.

The disease even managed to take her husband. He asked for a divorce after learning she had ALS, and Roby believes it was because he couldn't handle the situation. But Roby stayed strong and never gave up. Before marrying him, she had been a divorced mother of four children. She worked long hours at Winn-Dixie to provide for her children, and also had survived breast cancer and a heart attack.

Roby lives alone in a house she bought years ago with the money she saved from her Winn-Dixie paycheck. The home isn't handicapped accessible; when Roby moved there, she didn't know she one day would rely on a wheelchair. Now the home she was so proud to buy has become an uncomfortable place to live.

Roby's wheelchair can't fit through the door of her bathroom or her bedroom. This forces her to stand and walk through the doors, even though she is unstable on her feet and has fallen several times.

The doors need to be widened to accommodate her wheelchair.

The back deck Roby loves to sit on also has become a problem because she can't easily get out to it. A makeshift plywood ramp leads from the back door to the deck. The ramp isn't stable and, even though Roby knows it's dangerous, she still uses it because it's the only way she can get outside.

Roby receives $730 a month from Social Security, not enough to fix her home; she only has $100 left after paying bills.

"I don't want anyone to wait on me," she said. "I think that's been the hardest thing now, to ask for help."

She has found ways to meet her illness with creativity. She has learned to accomplish simple tasks, things others take for granted, without the use of her arms. To stay warm at night, Roby wiggles her arms and legs to move the covers close to her mouth, then pulls them up with her teeth.

She also has figured out a way to make an egg:

"I can get the little frying pan and put it on the stove, and then I get the olive oil that has a snap top with my teeth," Roby said. "Then I'll swing it on the counter, stand on a stool, drop an egg about 2 feet from it and it cracks, and then I pull the egg shells out and leave it on the burner with a lid and it will cook. Once the pan cools down I can eat the eggs."

Now, she'd like to share some of her creativity, humor and knowledge with others. Roby has offered to become a phone volunteer for a local service agency, to talk with others with disabilities and be a friend to those who need support.

"I've got to do something to leave a mark," Roby said.

The memories of the good times keep her going. She has lived with this deadly disease for nine years, something of a miracle considering that most people with ALS only live three to five years after the diagnosis.

"If I didn't go anywhere but stay here and watch TV from now on, I have memories," Roby said. "You know you can't cry because you didn't do it all. I'm not gonna lay down and die. You know I'm gonna keep going."

Learn more about the Hope Fund by visiting hopefund.org or calling (904) 359-HOPE.

The person featured today represents the people helped by Hope Fund donations. This year, the Hope Fund will assist about 800 clients from local social service agencies. Because so many recipients need the help provided by the Hope Fund, we ask that donations be made to the general fund for equal distribution to participating agencies and not be earmarked for specific people featured in The Times-Union.

The Hope Fund accepts only cash donations, not goods or services.


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