ALS takes victims ‘by the centimeter’
Story Category: General
By BETTY RIDGE
Tahlequah resident Marge Malone recalls the battle her husband, Jim, fought with the disease before it claimed his life.
Like the villain in one of the dramas he so loved, ALS stole onto the stage, shortening and finally claiming the life of Dr. Jim Malone.
Malone, a retired associate professor at Northeastern State University, died last Dec. 11 at age 65, only four months after his diagnosis with ALS. His decline and loss of abilities came more rapidly than for most ALS patients, who usually live for three to five years after their disease is diagnosed.
Marge Malone, who shared his struggle with him, described the experiences this week, as part of National ALS Awareness Month.
This is the 19th year for National ALS Month to spotlight the devastating effects of ALS – amytrophic lateral sclerosis, or Lou Gehrig’s disease. ALS affects more than 30,000 Americans, with about 5,000 new diagnoses made each year.
According to information from the Muscular Dystrophy Association, which sponsors National ALS Month, ALS destroys the nerve cells that control voluntary muscles, causing paralysis of the body’s voluntary muscles, including those needed for breathing. The cause is not yet known, nor is there a cure.
Before Jim’s diagnosis, the Malones were enjoying an active retirement. An NSU alumnus, he taught there 35 years in the fields of speech, humanities, theater and puppetry. He coached the men’s soccer team and served as the voice of Redmen football and basketball for several years.
He brought the art of puppetry to this area and held offices, including president, of a national puppetry organization. He also helped create the Boare’s Heade Feaste and directed plays. He retired in 2004.
Marge also enjoyed a career directing the vocal music program at Tahlequah High School. Under her tutelage, THS vocalists earned numerous awards. The choir’s tea rings became renowned in the community each Christmas, as students baked the holiday delicacies to earn money for their annual trips.
The disease crept up on Jim slowly.
“I had suspected something for a year,” Marge said. “I was kind of mad at him, thinking he was giving in to old age, or he’d had a mild stroke or something.”
Jim’s dentures didn’t fit right, and his speech wasn’t quite right. They thought the dentures didn’t fit because he’d lost weight. They got the dentures fixed, but he still didn’t speak the way he should.
After Jim participated in Dr. Lee Quiett’s funeral in December of 2008, some of his friends noticed something was wrong, and asked what the problem was.
It took some time to find out, with the eventual diagnosis of ALS coming on Aug. 10, 2009.
“It’s very difficult to diagnose, because so many things have to be ruled out,” Marge said. “He fell the Wednesday before Palm Sunday in 2009. He really banged up his head, and was kind of disoriented for a few days.”
That drove him to see his family doctor, who referred him to a Tulsa neurologist. The specialist told them it was a form of motor neuron disease, but didn’t specify ALS. But Marge researched all the symptoms online and began to suspect ALS was the cause of Jim’s ailments.
“Jim had really not a clue, and I’m really happy he didn’t know what was going on,” she said.
He spent many of his days pursuing his interest in genealogy, researching and making new discoveries about his heritage in his work area downstairs.
The Tulsa neurologist referred them to a specialist in Texas for a second opinion.
“Dr. Sharon Nations [of Southwestern Medical Center, at the University of Texas] came highly recommended. I really admire her and the work she did with Jim,” Marge said.
Nations spent the entire day of Aug. 10, 2009, with him, and at the end of the day concluded he had ALS. It was the bulbar form, which affects the mouth.
Jim’s speech had become steadily more difficult.
“By the time we were traveling, he had to write out notes to me because with the road noise, I couldn’t understand him at all,” Marge said.
He declined rapidly, his speech less understandable as days went by. He used a cane to walk, but continued to attend his Kiwanis Club meetings and remained as active as possible. Friends who hadn’t seen him recently expressed shock at the rapid progression of the disease.
“When it [ALS] really reared its ugly head, it moved fast,” Marge said.
Eating became more and more difficult. At Thanksgiving, the Malones hosted the family as usual. Marge fixed the elaborate traditional holiday feast, knowing it would probably be Jim’s last. He wasn’t able to eat.
“He was on a liquid diet, and he was losing weight practically by the hour,” Marge said.
She had been feeding him a high-protein diet, mixed with milk, and he could manage only two or three swallows.
By Dec. 5, he became unable to swallow at all.
“On that particular day, I knew he would become dehydrated,” Marge said.
She took him to the emergency room at Tahlequah City Hospital. He was able to walk to the car, using his cane.
Jim was always optimistic, and they referred to the hospice workers as home health care workers, without acknowledging the terminal nature of his disease.
Some time after his hospitalization, a feeding tube was installed. He was discharged and sent home, but was unable to stay there because they didn’t have the oxygen setup he needed. So he spent the last day of his life at Cherokee County Nursing Center.
Even then, he continued to make plans.
“He wrote me a note in the nursing home, complaining there was no place for a computer hookup. He was still doing his genealogy,” Marge said. “That night he lost the ability to write notes.”
Death came soon after.
Sharing Jim’s suffering and his final months was difficult, but, she said, “I’d do it again in a heartbeat.”
The memories come quietly, painfully, as she speaks of ALS, how it affected Jim and their lives.
“ALS just kills a person centimeter by centimeter. It’s all their muscles shutting down,” she said. “In his case it was the mouth– it shut off his nutrition and hydration.
“He worked the election Aug. 11. It was the last day he drove. He was loading things, and he fell flat on his face and broke his nose. He didn’t know what had happened to him. You just go day by day, hour by hour,” she said. “He thought he was going to beat ALS. As long as he could, I took him to Walmart every day to do some walking. I respect him for that.
“He was very optimistic. I think it’s important to remain hopeful.”
Did you know?
Each day during May, an outstanding individual with ALS will be featured on the Muscular Dystrophy Association’s ALS Division website, www.als-mda-org. He or she will describe the physical and emotional impact of the disease, and how the daily challenges impact life.
Because ALS affects not only the people with the disease, but all those who care about them, MDA is adding a new feature to its awareness effort -- “ALS: It’s My Story, Too.” Anyone whose life is touched by ALS can go to www.als-mda.org to offer his or her own experiences and perspectives, through text, photos and videos.
MDA has long been the world’s leading nongovernmental funding source of ALS research and services. The association’s total historical investment fighting ALS exceeds $270 million. In 2010, MDA has dedicated $13.3 million to ALS research, plus $10.4 million to health care services and information for those with ALS.
The programs include a cure-driven research project in Cambridge, Mass.; specialized medical care at 37 MDA/ALS Centers and more than 200 hospital-affiliated clinics; more than 200 support groups; an equipment loan program; research news; and practical information for daily living through magazines.
MDA is the nonprofit health agency dedicated to curing muscular dystrophy, ALS and related diseases by funding worldwide research. The association, which was the first nonprofit to receive a Lifetime Achievement Award from the American Medical Association (“for significant and lasting contributions to the health and welfare of humanity”), also provides comprehensive health care and support services, advocacy and education.