At 40 years old, BAYADA client Adam B. realizes that he has been given a great gift—the wisdom he can share with others about a disease he’s lived with for more than three decades.He relates his gift to a quote from one of his favorite super heroes, Spiderman, “With great power comes great responsibility,” he says. “If you have some kind of talent or power, you use it to help people.”
And he does not take that responsibility lightly.
An inherited disorder that impacts only males, Duchenne Muscular Dystrophy (DMD) is characterized by progressive muscle degeneration and weakness leading to difficulty with motor skills, frequent falls, and progressive difficulty walking. Eventually this muscle weakness spreads to the arms, neck, and other areas of the body, resulting in inability to breathe on his own and paralysis. And until relatively recently, boys with DMD usually did not survive much beyond their teen years.
Despite the odds, Adam has met each challenge presented to him with grace and resilience. And his challenges have been many: A progressive decrease in functioning and dependence on a tracheostomy tube and a ventilator 24 hours a day to breathe. The loss of friends. And the passing of his brother, who had DMD as well.
His words of advice? “I’ve learned that you have to adapt to every situation,” he says. “It’s tough when it happens, but you try to accept it. It makes you realize that when you’re with your friends, you do as much as you can. Get out there in the world.”
Not just living, but thriving
As a child, Adam’s preferred means of expression was through art, but he eventually lost that ability due to muscle weakness.
“When I got older and lost the use of my hands, I kept the mindset of an artist, but I decided to put it into writing,” he explains. “I figured that’s another way of drawing a picture—with words—and it made it easier to express myself after losing the one outlet.”
Adam took some college courses that sharpened his skills and gave him more confidence in his writing, He then began contributing movie reviews to magazines for adults with disabilities. And, with the help of his family and close friends, he realized his dream of making his own movie, a satirical docudrama based on his experiences as a person with a disability.
For more than 20 years, BAYADA Nurses have helped Adam live safely at home with his family, where he can pursue writing and other activities he loves. His BAYADA Nurse Rachel, who provides complex nursing care including tracheostomy and ventilator management, often accompanies him to the movies, so he can continue to enjoy one of his favorite pastimes.
Adam feels personally responsible for showing himself, his family, and the world not only how to live with—but thrive—with DMD. And that is why he is such an inspiration to all of us.
To learn more about DMD, visit www.mda.org.
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