Brotherly Dreams Transcend Disability

Neurology Now
January/February 2006
Volume 2(1)
p 28–29
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Jacob and Josef Gapko have never been content to live for the day. Brothers possessing different talents and abilities, they set their aspirations sky-high -with good cause. Diagnosed with Duchenne muscular dystrophy as young children, they refuse to let their disability deflect their dreams.

Jacob, 28, is working on his doctorate at the University of Wisconsin – Madison, where he earned his master's degree in library and information science, and wants to teach at a university. Josef, 22, is studying music at the University of Wisconsin–;Eau Clair, where he's a senior majoring in vocal performance as well as economics.

“We are,” says Jacob, “an example of how different people with Duchenne muscular dystrophy use their different talents and abilities to transcend the presumed limitations imposed by the condition.”

And those talents haven't gone unrecognized: Jacob won the American Library Association's 2004 Carnegie-Whitney Award to write “Children and Young Adults with Muscular Dystrophy: An Annotated Bibliography.” Josef likewise earned state honors for his singing. Then again, the Gapko brothers have been redefining perceptions since they were young.

Jacob, who was diagnosed at age 3, recalls readily adapting to the disorder. In grade school, he could run the mile in gym class, even though “it took me much longer than my peers to complete.” He could walk until he was 14, when getting to classes became impractical without a wheelchair. Although he developed learning disabilities associated with Duchenne as a child, he now works around them by, for instance, writing down oral directions he cannot easily remember.

Josef, who was diagnosed at 13 months, discovered music in grade school and found it a passion adaptable to his changing physical abilities. “Music is a skill you can keep,” he says. When playing piano became too difficult because of the need to use his arms, he joined a boys' choir.

He was able to walk until sixth grade, when he started to use a wheelchair. “It was kind of a relief to be using a chair,” he says. “There is less stigma using it at school than if you walk funny.”

As the brothers became older and began pursuing academic and career goals, they continued to work around their physical challenges. “Until a couple of years ago, I could drink from a glass without assistance,” Jacob says, “but since I have trouble lifting a glass, I now use straws.” Because his hands remain functional, he continues to type, take handwritten notes in class, and use pens and highlighters while studying. Several years ago he started using a BiPAP, a noninvasive nighttime ventilator to make it easier for him to breathe while sleeping - a common problem for people with Duchenne muscular dystrophy due to loss of muscle control.

Josef concentrates on what's needed physically for singing. His music teacher helps him adjust his wheelchair to increase his lung capacity. He chooses pieces that fit his capabilities, and uses music software to alter tempo and breathing space in his music. He doesn't use a ventilator yet, but will consider one at some point.

While tackling physical limitations is part of living with the disease, the brothers - who reside with their parents in Eau Clair - stress the importance of pursuing goals.

Jacob's next academic goal: presenting a paper on his doctoral work this July at the Information Seeking in Context Conference at the University of Technology in Sydney, Australia. In addition to academic pursuits, he's president of his local Muscular Dystrophy Association chapter.

Josef is also busy setting goals. While he views singing as an avocation, he says going professional is appealing. “But there's the question of what's going to happen when things get worse,” he says. “I'm considering going to graduate school in music history. I can use my music skills and apply it to that. I can write papers and later [use software to] voice-command them. That's my contingency plan for how I keep going with music.”

His recent musical achievements include placing third at last year's finals of the prestigious student audition for the Wisconsin chapter of the National Association of Teachers of Singing. “It was,” he says, “an awesome and unexpected honor.”

Striving for such goals is important because, as Jacob says, “having Duchenne muscular dystrophy is not about just living for the day.”

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