Only a year ago, Roz Jeffrey, 65, sailed around the Greek Islands with her husband. They harnessed the wind with canvas, a rudder and physical grit.
Today, the Gulfport woman can't walk or talk. She uses a wheelchair and is fed through a tube. Most of her large motor skills have trickled away. The trouble began with her speech. It felt like marbles rattling under her tongue. ALS — better known as Lou Gehrig's disease — inched forward.
Amyotrophic lateral sclerosis is a progressive neurodegenerative disease. It affects motor neurons in the brain and spinal cord. Once her diaphragm is affected, Jeffrey will stop breathing.
"She will die of suffocation," said her daughter Shelly Reale, 45, of Seminole.
The cause of ALS is unknown, and there is no cure.
The impact on her family is devastating.
"I had two options," Reale said. "Get in bed, pull the covers over my head and cry until she dies, or do something meaningful."
She chose action with a passion.
Reale set up a fundraising event for the ALS Association Florida Chapter. She will honor Jeffrey's life by helping others on her mother's birthday, Nov. 7. Reale, an avid cyclist, has scheduled the Tour de Vie at Walsingham Park in Largo.
Three cycling routes are planned to suit riders, from families to professionals. Routes include a 5-mile fun ride, a 25-mile ride on the Pinellas Trail and the challenging Century Loop. The 100K loop extends south on the trail to Blossom Lake Park, north to Palm Harbor and back to Walsingham Park.
Supporters unable to pedal for the cause may sponsor a rider or team. They may also become a virtual rider to join in the challenge. Both can be done online at tourdevie.org.
The goal is to raise at least $50,000 for the local chapter. Registration fee is $35, and riders are asked to reach a $150 fundraising minimum. Online tools help participants get started.
Raising awareness is just as important to Reale.
"Once people learn about ALS, they are generous and compassionate,'' she said. "They want to help."
The event will include a Health & Wellness Expo with 25 vendors to share information about healthy cooking, cycling, ALS and more. Music, food and beverages will add to the festivities. All proceeds will support patient care and research to find a cure.
"Shelly brought this fabulous event idea to us," said Kamden Kuhn, ALS spokeswoman. "This is our first local event reaching out to the cycling community."
In the Tampa Bay area, about 300 people are living with the disease. Nationally, one person is diagnosed with ALS every 90 minutes and another dies every 90 minutes.
ALS marches on inside Jeffrey's body, although her mind remains sharp. Her life expectancy is two to five years.
"It's about trying to make sense of something senseless," Reale said. "After all, she's my mom."