Tom Bush is like any other friendly Oro Valley resident.
The 66-year-old retiree is close to many of his neighbors. He volunteers at his church, and is active in a local history club.
Bush and his wife, 67-year-old Tina, love going to concerts, symphonies, and out to eat. They frequently host their numerous children, grandchildren and friends from different parts of the country.
But Tom Bush also lives with a debilitating disease that affects every aspect of his life, one he has learned to juggle so well that Bush says he and his wife “live a relatively normal life.”
He was born with muscular dystrophy, which causes the degeneration of muscle in an affected person. Specifically, Bush lives with spinal muscular dystrophy.
His condition is “generally painless,” but it causes weakness in the arms, legs, back and hands that worsens every day.
The disease confines Bush to a wheelchair, which he maneuvers through his wheelchair-friendly house, where all light switches, doorknobs, and plugs are at his chair’s level. He also drives a specially adapted car that “helps him maintain independence and gives my wife a break.”
Tina, his “support and quality of life,” helps Bush with everything his weakened muscles cannot do, from lifting a heavy coffee cup to bathing. She agreed that, sometimes, assisting Bush with everyday tasks can “be a bit stressful.”
“Simply dressing him in the morning is hard. Just to go through the process,” she said. “While it takes an average person maybe 30 to 45 minutes to get ready in the mornings, I take two or more hours to get Tom ready.”
Both natives of New Jersey, the Bushes moved to warm Tucson in 1993 because the damp cold affected Bush’s mobility. Bush said cold “had a paralyzing effect” on his muscles, especially his hands.
Back east, Bush had spent more than 30 years working for the state of New Jersey, helping implement the Americans with Disabilities Act. It was during this time that his love of service for America’s disabled instilled itself into Bush’s character.
When he moved to Tucson, Bush continued that love of service. In addition to serving on and expanding the Muscular Dystrophy Association Task Force on Public Awareness, he worked with the town of Oro Valley to create the award-winning transportation service Coyote Run, which serves the elderly and disabled in Oro Valley.
He has also spearheaded numerous other ADA-related projects which extend greater benefits to Oro Valley’s disabled, including Tucson-based organization Linkages, which helps Tucson’s disabled find employment. Bush had struggled with job discrimination during his younger years in New Jersey.
Bush was recently honored with the 2009 Robert Ross MDA National Personal Achievement Award, given out by the Muscular Dystrophy Association to one of its outstanding members. The award, which recognizes the accomplishments and community involvement of people with muscular dystrophy, now graces the top of his daughter’s piano in the couple’s home.
“His success is sure to inspire hope in others with muscle diseases, and in parents of children with those diseases, by demonstrating that life can be full and rewarding despite the challenges disability presents,” said Gerald C. Weinberg, MDA president and chief executive officer.
While the award gave Bush national notoriety for his good works, he simply likes to give service because “it was payback. I had benefited in my lifetime from others’ kindness, and I could do something to help others with disabilities.
“I want to serve as a role model for kids with the disease and parents coping with the disease as well,” he said. “I want to show people with the disease that there’s a life to live, a productive, useful life.”
Bush believes that volunteering and staying active also help him cope with the disease, which keeps him from walking and lifting heavy objects. “It’s all mental,” he said.
Because his disease is progressive, Bush constantly deals with the disease that “ages you twice as fast.” He loses more mobility every year.
Through his emotional and painful ordeals with his condition, Tom Bush is grateful for the values he has learned.
“This has given me a much greater appreciation for what I have in the here-and-now.”