How people cope and subsequently learn to live well while dealing with a progressive medical condition is a central theme in my health
advocacy writing. Later this year, I will be interviewing Deshae Lott, PhD, a prolific writer and health care advocate. She has written widely on subjects related to ventilator dependent living, spirituality, and health care access for persons with disabilities.
In the following essay, "No Way Out But In: Responding to Chaos Positively with Forgiveness and Grief", Deshae walks the reader through the challenges of a week in her life of living with Limb Girdle Muscular Dystrophy. In this piece, Deshae shares her own acquired model of coping, “Whether much is going awry or right, I restore my inner serenity and well-being each day by using prayer and meditation, and processing grief and forgiving.
No day seems to pass without my using these mental resources,” she states. Her mission is to offer encouragement to those who struggle with the emotional stresses of complex health concerns.
Janne Kouri, President and Founder of NextStep Fitness, a state-of-the-art specialized gym facility in Lawndale, California, is an advocate with a focused dream: “…to expand NextStep Fitness in communities of
need throughout the U.S., so people living with paralysis or disability would have access to community-based fitness options. This is a nationwide problem, and it needs to be addressed,” he says.
This mission is inspired by Kouri’s own journey. In 2006, while playing beach volleyball with friends, Kouri took a break and dove into the water to cool off; he hit his head on a sandbar and was instantly paralyzed from the neck down. He then began a challenging rehabilitation for his spinal cord injury at Fraizer Rehab Institute in Louisville, Kentucky. His background as an avid exerciser and former college football athlete at Georgetown University equipped him with a unique sensibility for tackling the demands of his recovery.
At the White House childhood obesity summit held last April, First Lady Michele Obama launched the Let's Move campaign to inspire healthier environments in schools and communities and to teach kids the vital skills of wellness - exercise and healthy eating. I recently spoke with Gregory Chertock, sports psychologist, fitness trainer, and baseball coach specializing in elementary and middle school youth, on how exercise/sports impact the development of children."Exercise training can teach kids powerful life skills that go beyond excelling in a sport," says Chertok.
Yoga has gained significant popularity, with classes held in small towns and big cities throughout the U.S. What may not be as widely known is the practice of adaptive yoga; yoga that is gentler, less rigorous in its poses, and modified by utilizing a chair or assistance from another person. A year ago, I interviewed Matthew Sanford of Mind-Body Solutions Center. Sanford is a pioneer in teaching yoga to persons with disabilities and believes that yoga can be adapted to many levels of limitation. In Matthew's own life, yoga was a means to establishing a mind-body connection.
If you've never tried yoga, find an instructor who has experience with restorative/adaptive yoga methods. Start with one or two restorative poses that you can count on a few times a week for stress relief, and then build on that. Here is one example of a restorative pose, taught by Rodney Yee.
Claudia Glaser-Mussen, the sassy singer-accordionist of the Grammy- nominated children's rock band, Brady Rymer and The Little Band That Could, has a lot to say about her muse, “I can feel my mother's presence on stage, when I perform; she inspires me and I'm able to convey that energy to the audience.” A thread of music runs through Glaser-Mussen’s life, "I grew up in a home where music was a part of our experience,” she says. Music never became more important for Glaser-Mussen than it did in the final stages of her mother’s life, when she was coping with Alzheimer’s disease. In this telling, WNYC radio interview, Opera Mom, Glaser-Mussen and her brother, violinist Matt Glaser, reflected on the role that music had in the care of their mother, Jeanette Glaser-Taubin, a professional opera singer.
Fitness Resolutions will be on the minds of many Americans as they ring in the New Year. News media venues will be inundated with feature stories on exercise, healthy eating, and the latest tech gadgets to battle the bulge.
The advice is limitless, with tips for the semi-pro athlete to the low budget exerciser. But why is it—with the influx of health education—that some people are able to establish the exercise habit and not others? “It’s not about the number on the scale, it’s about your connection to yourself,” says Robin Ox Goodpasture, a certified personal trainer, and body image consultant.
My interest in Paralympic sports was sparked after viewing Murderball, a gripping documentary on the fierce athleticism of wheelchair rugby competitors. Earlier this summer, I spoke with Charlie Huebner, Chief of Paralympics, U.S. Olympic Center based in Colorado, about the paralympics movement in the U.S. Still in its infancy, the Paralympic movement has grown exponentially both in the diversity of sports
venues and in the broad ranging disabilities of its athletes.
Today is the 20th Anniversary of the (ADA) Americans with Disabilities Act. Read what advocates are saying about this significant milestone: AAPD, NYT, Center for Disability Rights, ADA National Network.
One of the most memorable people I've interviewed in my travels is Ken Kunken, Deputy Bureau Chief of the Nassau County District Attorney's office. Over 30 years ago, Kunken suffered a spinal cord injury at age 20 while playing football at Cornell University, paralyzing him from the neck down. Despite his life-altering injury, Kunken's gifted intellect and perseverance afforded him an impressive string of academic and professional achievements. Ken would be the first to say these pale in comparison to becoming a Dad. "Being a father is my proudest accomplishment", says Kunken. When Kunken and his wife, Anna, decided to have a family, they sought help from The Miami Project- an organization specializing in fertility issues for paralyzed males.
On May 21-23, the Abilities Expo - New York Metro division - will be showcasing an impressive range of options in disability technology, expanding the scope of accessibility for persons with disabilities. Thirty-one years ago, the Abilities Expo began with the humble efforts of Dick and Pat Wooten. Dick, a polio survivor and wheelchair user since his teens, wanted to establish a forum to share the resources that enabled him live a better life. Today, the Abilities Expo has grown exponentially, providing direct learning to attendees on the latest in assistive devices, home furnishings, and daily living aids across disabilities.
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