Video: After 24 Years With ALS, Ginny Curtis' Faith Grows Stronger

Virginia “Ginny” Curtis glanced outside her Peckham Road home in Little Compton earlier this month and admired her immaculate backyard and beautiful garden. She said her hummingbird feeder was getting some activity.

Citing the famous words of deceased baseball legend Lou Gehrig, she said, “I am the luckiest girl in the world,” referring to living a full life with a wonderful family, fabulous husband and a great home.

Curtis, 74, has been living with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, for 24 years. She received the Brian Dickinson Courage Award earlier this month at the 15^th Annual “Evening of Hope” held at Quidnesset Country Club in North Kingstown by The ALS Association Rhode Island Chapter. Brian Dickinson was a reporter for the Providence Journal who had ALS and wrote his stories using a machine that detected his eye movement.

The award is given to an individual who shows tremendous faith and courage and serves as an inspiration for others affected by ALS.

When she was initially diagnosed with the neurological disease, Curtis said, she was given three to five years to live. She thought she would never get to see her grandchildren.

“All seven were at the ceremony,” Curtis said.

Her husband, Wayne, said ALS attacks every nerve in the body.

“Every muscle movement generates nerve movement,” he said. “It’s all attached to your motor neuron system, so the motor skills, swallowing and hand-eye coordination are impaired.”

ALS affects the upper and lower body systems and either the left or the right side of the body. Every six months, on an as-needed basis, Curtis attends an ALS clinic in Providence where a neurologist, nutritionist and speech pathologist tend to her.

To date, Curtis said she has not had any major problems to deal with. Before being diagnosed, she began noticing symptoms and was falling down often for "no apparent reason." Doctors first told her it was stress, then suggested multiple scleroris or a brain tumor, before arriving at ALS.

“We decided a long time ago when she had the three- to five-year possibility we’d attempt to live the most normal life we could,” said her husband. They moved to a one-story house.

Curtis still cooks, bakes, sees her children and grandchildren, reads and does needlework and embroidery. She is also the hospitality chairwoman of the Little Compton Garden Club. Her biggest problems are in the winter, when the cold weather makes her whole body stiff like a two-by-four.

“The doctors at the clinic are glad to see someone like her, who’s been in it for so long,” said Wayne Curtis. “They use that as an incentive.”

The Curtises said one of the last times they were at the Providence clinic, they heard there has not been any major breakthrough in research to prevent or cure ALS, but they asked Ginny for her DNA blood samples, thinking she could have a component that’s let her live so long.

Prior to being diagnosed, Curtis was an optician for Curtis Optical, with offices in Newport and Providence. Her husband is a retired schoolteacher of 40 years, who started in New Hampshire and ended at Moses Brown in Providence.

This summer the Curtises plan to go to the beach and be outside in the warm weather as often as possible.

Her relationship with this disease mirrors that of world-renowned physicist and cosmologist Stephen Hawking, 69, who has been living with a variation of ALS for more than 40 years. It has left him completely paralyzed. Hawking cannot breathe, eat or hold his head up on his own.

“I don’t consider myself in the same category as him,” Curtis said.

Watch the attached YouTube video for an extended interview with the Curtises.