Funding a cure

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By John Foster

It has already taken her career, her dream house and her ability to walk. It is taking her independence and most likely will eventually take her life.Last week Carole Jones of La Grange faced four U. S. Congressmen to ask for funding to research a cure for a disease that has taken so much away from her, but cannot take away her spirit.She joined representatives from all 50 states who lobbied congress on behalf of The ALS Association. They asked representatives to fund research about the disease, including specifically encouraging congress to pass a bill in the works that will allot $5 million toward research into the occurrence of the disease in veterans, who are diagnosed with the disease at disproportionate levels.Although not a veteran, she has been profoundly affected by the disease. She personally told her story to U.S. Representatives representing various districts of Kentucky — Ben Chandler, Geoff Davis, Hal Rogers and Edward Whitfield.Her journey to Washington didn’t begin with a crack of dawn plane flight May 11. It began with an admission in 2003 at the Charlotte, N.C. airport.For a time, Jones wouldn’t admit anything was wrong. When she’d drop a comb while working as a hair dresser, she chalked it up to clumsiness. When she was out of breath, she’d chalk it up to fatigue.But while traveling through the Charlotte airport, tired, on the way home from vacation, she stumbled and her feet flopped so much she couldn’t keep backless shoes on.“Something is wrong with my body,” she admitted.That admission took her on a journey of its own – 2 1/2 years, eight doctors and innumerable tests long.On Feb. 17, in Columbus, Ohio, she received a definitive diagnosis after the results of a muscle biopsy and it was affirmative — amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, a neurological disease that progressively diminishes muscle function, and with it independence, and for many, life.According to information from The ALS Association, although the disease was first identified in 1869, little is known about the causes or how it can be prevented, effectively treated or cured. The prognosis for a person diagnosed in 2007 is the same as in 1869, according to the association — death in an average of two to five years.The drive home from Columbus was quiet, she said. She and her husband, Don, held hands and cried. They didn’t talk much. Eventually she told her husband, “It is what it is.”“We can handle this,” they said to each other.She told the congressmen about how she has gone from a cane to a walker to a push chair to a power chair.She told them how her husband assists her in bathing, and in dressing, how he combs her hair, helps her turn over in bed and even massages her feet. He has taken over cooking and doing the laundry while she barks orders, she said. He has even improved on combing her hair up to expectations.“What a guy,” she said.“I just do what needs to be done,” he said.He told the congressmen that Medicare stops at the bathroom door. Although it has helped in many ways, including funding a $28,000 motorized wheelchair, it will not fund any equipment for the bathroom, although that is where the vast majority of falls happen, he said.They said the congressmen seemed receptive to what they had to say.Carole maintains a journal about her disease. She makes sure to save space to count her blessings. At the top of the list is Don. Also on the list is that she was in her late 60s by the time the disease took effect. She’s had time to raise her children and enjoy her grandchildren, and time to enjoy the dream home her husband built on Crystal Lake before they had to move to a one-story home around the corner.She counts her neighbors, Covenant United Methodist Church and the ALS support group as blessings, as well as a group of friends who call themselves the “Saving Graces.”The Saving Graces have been friends for more than 30 years, she said. They still drive out from Louisville to pick up Jones whenever they have an outing.Determined to stay positive, she counts a nest of baby robins visible outside the dining room window as a blessing.“My momma didn’t raise no sissies,” she said.Friend Tim Ballard said the Joneses are inspirational. She maintains a zest for life as she faces this battle he said, “all the while with an uplifting attitude and interest in other people and never focusing on her problems.”She tries to maintain as much independence as possible. She does arm exercises on a contraption her husband built for her. She squeezes a ball 300 times a day to maintain as much strength in her hands as possible to be able to write and eat on her own.She hems a pair of slacks, even though it takes her an hour longer than it used to.She takes 35 pills of supplements a day, in the hope that they will ease the pain and slow the disease, especially in the hope that she will not lose the ability to speak.But there is little else to do, she said.“I know I’m never gonna lick it, but I’m gonna do everything I can,” she said.There is no cure. The only drugs available slow the disease only slightly while bombarding the user with negative side effects.Don said he sees her lose a little bit of strength every day.It’s a monster of a disease, Carole said, but if anyone can handle it, she and her husband can.The last thing she said to each congressman sums up her approach.“I refuse to whine,” she told them.

E-mail us about this story at: jfoster@oldhamera.com.