PALS - Tom Steckman relies on Fluffy for
some companionship.
Tom Steckman, 45, Kansas City-North, does not seem to lack for company or conversation despite being mostly bed-ridden from amyotrophic lateral sclerosis, known by the initials ALS or Lou Gehrig's disease.
When he has an "up" day, Steckman's mother Sharon Sandefur helps him out of bed, dressed and into his motorized wheelchair.
"I prowl the neighborhood," he said, laughing. "All the neighbors know who I am so we talk. It's just fun."
Sandefur also takes Steckman to Harrah's. She carries Polaroid pictures of her smiling son with smiling waitresses.
"He's always getting hugs and kisses," she said.
Steckman said he enjoys Harrah's entertainment, the number of restaurant workers who know him and appreciates the casino's medical staff.
Mother and son receive visitors from across the country after many of these people found Steckman's Steckman's Web site which features stories and encouraging thoughts.
"Tom's had people drive from West Virginia and Florida to talk to him," Sandefur said. "A couple is coming soon from the Ozarks to sit by my son and listen to him."
On his Web site, Steckman's guest book is filled with names from England, Australia and Canada.
"Maybe I am an unofficial spokesman for ALS," Steckman said. "Until I take my dying breath, I plan to live and share hope with others."
Steckman received the ALS diagnosis three years ago, a week before Easter.
"I had symptoms eight months to a year prior to diagnosis, but the doctors weren't sure," he said. "I kept telling them that something was wrong because I had weakness in my legs. I'd stumble too much."
The ice storm of January 2002 started some of the actions that led to his diagnosis, Steckman said.
"I broke my toe off when I stumbled," Steckman said. "I was getting my son a drink of water during the night and I stumbled. After some healing, I bought some steel-toed boots and tried to go back to work as a tree trimmer. My boss noticed I was struggling, dragging my legs around. He said I had to go find out what was wrong."
A headache and fainting spell sent him to the North Kansas City Hospital Emergency Room.
"I was admitted and on the fourth day there, I would told that I had ALS after a many tests," Steckman said. "I was told that the disease would progress so I could not walk, use my arms and eventually attack my lungs and speech. It would also eventually take my life.
"My chin dropped to my chest. I said I had to think about it and that I really needed a cigarette."
Steckman said the nurses unhooked him from his I.V. and he took a wheelchair to an observation deck, smoked two cigarettes while staring at the Kansas City skyline, and came back in to crush the remaining cigarettes in the package.
"I laid there all night thinking," he said.
After his family dealt with the shock, Steckman asked to be discharged and he started planting flowers for Mother's Day.
"I was really only upset the first week," he said.
Steckman soon found some outlets. He visited the Muscular Dystrophy Association clinic about six months after diagnosis. The MDA is a world leader among voluntary agencies in fighting ALS. Both diseases are considered neuromuscular diseases.
"I ended up speaking at the local site for the telethon," Steckman said. "I have always been a singer and I did a fund-raiser at Marcy's. I decided to put out a CD. I knew my singing helped keep me in a good mood. I really believe all my singing helped keep my lungs stronger. It has only been in the last couple months that I have had shortness of breath."
Sandefur said she and her son sometimes have yelling matches.
"He can still muster that when he gets frustrated," she said.
Steckman said he moved back with his parents not long after his diagnosis.
"Mom really changed her whole lifestyle for me," he said. "I have thought about going to a nursing home, but Mom and Pops want me here."
Sandefur said others have asked her, "Why not a nursing home?"
"I brought him into this world and I will help him leave it as best as I can," she said.
Sandefur quit her job after almost 19 years at Marcy's.
"I am blessed that my family has rallied around me," Steckman said. "The closeness of my family has given me a calmness. I tell people that God has a sense of humor to give me ALS.
"I want people to know that they have to enjoy what you have. Even though I know my life is shortened, my mind is sharp as a tack and I will keep fighting."
Tommy Lee lost his battle to ALS on March 22, 2006
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