Two ALS victims somewhere in the world died in the hour’s time it took marchers to travel through Riverhead yesterday, Chris Pendergast, founder of the ALS Ride for Life, told the hushed crowd of about 150 students, teachers and supporters gathered around him outside Riverhead Town Hall. His audience strained to hear Pendergast’s message of determination and hope, whispered in a barely audible voice and repeated by a “translator” volunteer.
Pendergast, 65, diagnosed in 1993 with the rare and deadly disease Amyotrophic Lateral Sclerosis — commonly known as Lou Gehrig’s Disease, named for the Yankee great who died at age 37 from the illness — has all but lost his ability to speak aloud. His body has been ravaged by the disease, which attacks the nerve cells in the brain and spinal cord that control muscle movement. Nerve cells waste away or die, and can no longer send messages to muscles. Eventually the victim’s muscles weaken and he can no longer move his arms, legs, and body. When the muscles in the chest area stop working, it becomes hard or impossible for him to breathe on his own. Most die of respiratory failure, typically within two to three years of diagnosis. Fewer than 10 percent of ALS patients live more than five years.
Pendergast has beat the odds, for reasons no one can explain. Though he has lost the use of his legs, arms and hands and can breathe only with a respirator, he is still alive and, thanks to a motorized wheelchair he can control with head movements, able to make the annual trek from Montauk to Manhattan, now in its 17th year. Pendergast, who started the ALS Ride for Life to raise awareness and research dollars for the disease, says in 1998 he never expected to live to see a second ride.
Over the years, Pendergast and his wife Chris have been joined on the journey by other ALS victims who have since seen their disease progress to its near-certain conclusion.
Accompanying Pendergast this year is 52-year-old Frank Wojcik, diagnosed Nov. 13, 2012. Wojcik still has a strong voice, the use of his arms and hands and limited use of his legs. With the help of leg braces, he can stand on his own and move around his Commack home, as long as he has something to hold onto — like a toddler first learning to walk, Debbie Wojcik, his wife and sole caregiver said yesterday.
Before the illness, Wojcik was a butcher and meat department manager for King Kullen in the supermarket chain’s Eastport and Riverhead stores.
“I’m hanging in there,” said Wojcik, who is participating in the ride for the first time.
Stricken with various symptoms like slurred speech and muscle weakness, Wojcik and his wife knew the dread diagnosis even before neurologists confirmed it. They watched a friend waste away and die with ALS, and so were aware of the early signs. Doctors initially thought Wojcik had multiple sclerosis.
A year-and-a-half after the diagnosis, their days are now centered on Frank’s care. Debbie, a cancer survivor who has lost the use of her right arm, devotes all her time to caregiving.
“He falls a lot,” Debbie Wojcik said. Unfortunately, they live in a multi-level home, with three steps separating the living room from the kitchen and dining room on the main level and a flight of stairs separating it from the bedrooms and bathroom on the second floor. Frank fell and hit his head trying to get up those three stairs a few weeks ago and had staples in his head to close the cut.
“They couldn’t put a chair lift on the steps from the foyer to the living room, only from the living room going up to the bedrooms,” Debbie said. She’s installed grab bars in every room of their home and removed the saddles in the doorways to make it easier for her husband get around. Still, it’s difficult.
“I’m not sure what we’ll do when he can’t get out of the chair at all,” Debbie said. They’re trying to sell their home, so far to no avail.
The couple — together for 13 years but married just four — is struggling under crushing debt incurred since her illness sidelined her from work before he was diagnosed with ALS. They live on Social Security disability and pensions from their jobs, but barely make ends meet, as their current medical expenses continue to mount. Copayments for Frank’s medications cost $1,028 a month during the first year after his diagnosis.
“They put us on the wrong Medicare plan,” Debbie explains. Once enrolled, they had to wait a year to get on the right plan, which made their prescription drug copays more affordable.
“Month to month we survive,” Debbie said. “You do what you have to. We adjust.”
Debbie attends a support group headed up by Christine Pendergast, wife of the ALS Ride for Life founder.
“She says you need to be a wife and not just a caregiver,” Debbie said. “I’m OK with being both.”
Daily life is hard. Frank has sleepless nights more often than not, wracked by physical discomfort as well as mental and emotional turmoil, facing an almost certain future of physical deterioration, debilitation and death.
Debbie said she draws strength to persevere by thinking back her own recent battle against cancer.
“He totally took care of me,” she said. “Now it’s my turn to take care of him.”
The ALS Ride for Life, an all-volunteer nonprofit corporation, has helped raise more than $7 million since its inception, according to the group’s website. Fifty percent of the funds raised go to research, 40 percent to patient services including nursing respite, equipment and transportation, and 10 percent to awareness and education.
Yesterday at Riverhead Town Hall, McGann-Mercy students presented Pendergast, a Mercy High School alum, with a $3,000 donation to the Ride for Life, raised by students throughout the year. Riverhead High School student government contributed $250. Riverhead Councilman James Wooten presented Pendergast with a proclamation.
This year’s walk/ride across Long Island, began May 5 in East Hampton, at a tree planted by the East Hampton Teachers’ Association in honor of their friend and fellow ALS Ride For Lifer Denis Craine, who passed away several years ago. The Ride for Life then made its way to the North Fork, stopping at Greenport High School, Southold Elementary School, Cutchogue East Elementary School and in Mattituck. The ride concludes May 17 with the final leg of its journey across the Brooklyn Bridge and through Manhattan, ending with a rally in Central Park.
To donate to the ALS Ride for Life, click here.
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