Daily photo by John Godbey|
Joan Dempsey with her granddaughter Chandler Sprader and husband, Roger.
Decatur couple use eye blinks, mouth twitches to communicate
Living with Lou Gehrig's
"One?" Roger Dempsey said. "Two?"
He halted the count because his wife, Joan, blinked.
He resumed in the same rapid fashion.
"G?" he said. "H?"
He stopped on the next letter, when she blinked "yes" again. A slight movement of her mouth means "no."
Doctors diagnosed Joan Dempsey, 54, with amyotrophic lateral sclerosis, or Lou Gehrig's disease, in April 2000. There is no known cause or cure. She last spoke during 2004.
The Decatur grandparents, married for more than 38 years, use the chart, a kind of verbal version of Morse code, to communicate. This is how it works.
The chart groups the 26 letters of the alphabet in Nos. 1 through 5. For example, No. 1 includes A through F, No. 2 is G through K. No. 5 has the smallest grouping of letters, W through Z.
By calling out numbers and letters to his wife, who has been on a ventilator since July 2005, they spell the words she cannot vocalize.
He contends that one of the cruelest of diseases has not yet robbed her of a mind that is as bright as ever.
“Joan has ALS, but we’re all living it,” said Roger Dempsey, who retired from Delphi Steering Systems in December. “It impacts the whole family.”
A day in the life
He uses a patient lift to get her up each day about 3 p.m. and sit her in a wheelchair, where she remains for about five hours. Their daughters, Nikki Sprader of Mooresville and Kristie Royer of Decatur, alternate nights helping him get their mother to bed.
“We take life as normal as we can,” he said. “Joan is on her back all the time. She can’t move anything but facial muscles, but she isn’t fastened to the bedroom.”
He purchased a wheelchair-accessible van with a lift in January and drives her to Danville Road Church of Christ for Sunday morning services two or three times a month. Royer has two children, and when Sprader delivered their third grandchild Feb. 28 in Huntsville, her mother was there.
And when doctors performed hernia surgery on the Dempseys’ other child, Rod, of Tarrant, on Aug. 17, she was up at 4 a.m. for the ride to St. Vincent’s Hospital in Birmingham “to be with my 26-year-old baby.”
In May 2005, her husband and Sprader accompanied her to Beijing, where doctors did experimental surgery, transplanting olfactory cells into her brain.
“We believe the surgery helped her, but it’s difficult to say how much,” Roger Dempsey said. “We probably did it too late, but it took so long to get an appointment.”
Walk to D’Feet ALS
Joan Dempsey plans to be in Huntsville on Sept. 22 at Louis Crews Stadium for the start of the annual fundraiser, Walk to D’Feet ALS, sponsored by the ALS Association’s Alabama chapter.
“Our children took part in the walk last year in Birmingham,” Roger Dempsey said. “That’s how we got involved with the Huntsville support group, where we meet once a month. I wish we had done it five years earlier.”
Marcia Alexander, who lives five minutes from the Dempseys, has been Joan Dempsey’s caregiver for two years.
“She watches soap operas a lot, and if they’re laughing, we’re laughing, and if they’re crying, we’re crying,” Alexander said. “But sometimes we have those blah days, where we do nothing.”
Roger Dempsey said he and his wife still fuss.
“If she wrinkles her forehead, she’s mad, and I’m in trouble,” he said.
Joan Dempsey, whose beaming smile overshadows her condition, had a parting message for a recent guest. With her husband guiding her through the chart, she said, “I’d like for friends to visit.”
Walk to D’Feet ALS
In addition to the ALS fundraiser in Huntsville, which begins Sept. 22 at 9 a.m. at Louis Crews Stadium, the Alabama chapter will host a walk Oct. 27 in Birmingham, starting in Seibert Stadium at Samford University. For more information, log on to www.ALSAlabama.org., e-mail walk@ALSAlabama.org or phone 519-9030.
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