Avitzur, Orly M.D.
It began suddenly in 2003: two-year-old Samantha Sherwood got up from a nap and stumbled. Although doctors in the emergency department suspected an ear infection, Samantha's symptoms steadily worsened during the following week. Walking became more difficult. She developed uncontrollable shaking and irregular, rapid eye movements that left her holding her head and crying. After Samantha underwent many tests and medical examinations, she was diagnosed with opsoclonus myoclonus by a pediatric neurologist. This rare, degenerative, neurologic condition affects one in five million people.
Failing to respond to a number of medications—including twice-daily steroid injections that caused mood swings—Sherwood was taken to another specialist. That doctor placed her on intravenous (IV) immunoglobulin therapy and rituximab (brand name Rituxan), an anticancer drug, for the next four years. Although Sherwood responded well, she was soon diagnosed with neuroblastoma, a cancer often associated with opsoclonus myoclonus. She required surgery to have her left adrenal gland removed, underwent chemotherapy, and received more steroids.
“I have spent so much time in the hospital hooked to IV poles, having surgeries, having treatments to make me better,” Samantha, now 12 years old, recently wrote on her blog (caringbridge.org/visit/samanthasherwood/mystory). This left her little time to enjoy childhood, and the disease robbed her of the equilibrium she needed to learn how to jump rope or ride a two-wheeled bike. So when Samantha got a Rhoades car quadricycle for her ninth birthday, she was thrilled. “It's been life-changing,” says Sharon Leonhardt, her grandmother. “She loves feeling in control and being able to sit with the confidence that she won't fall over.” Sherwood experiences a sense of peace and a boost to her self-esteem when she is outdoors on neighborhood bike trails. She also gets valuable exercise by pedaling the quadricycle on the five-mile course she completes almost every day.
EVERYONE NEEDS PHYSICAL ACTIVITY
Exercise is a struggle for most of us, but more so for those who live with neurologic disabilities and physical limitations. In addition to the usual barriers of motivation and time, people with disabilities face extra challenges such as finding the right equipment and facilities. It's no surprise then that they are significantly more likely to be sedentary than people without disabilities, increasing their risk of chronic health conditions such as heart disease and diabetes.
“People who have had a stroke or traumatic brain injury or been diagnosed with multiple sclerosis or another chronic neurologic disease get even more debilitated when they sit around,” says Michael J. Reding, M.D., the former director of stroke rehabilitation at Burke Rehabilitation Hospital in White Plains, NY. “Inactivity can make other problems, such as osteoporosis, constipation, and pressure sores, worse. The more mobile and active a person is, the greater their sense of well-being and life satisfaction and the easier it is for caregivers,” Dr. Reding says.
However, when it comes to people with disabilities, even knowledgeable health professionals often come up short on strategies. “The medical profession doesn't promote exercise urgently enough,” says Carol Enseki, former president of the Brooklyn Children's Museum, who was diagnosed with Parkinson's disease (PD) in 2000. “Doctors rarely prescribe exercise. When they do, they are usually not aware of the programs available in their communities,” she adds.
But increasingly, unique opportunities are becoming available to those looking to incorporate fitness—and even sports—into their lives.
RITES OF PASSAGE
Riding a bike is one of those rites of passage that most of us take for granted. It was a dream the Wicklunds refused to give up on when they set out to design a bike for their son. Seven-year-old David (“Davey”) has Lesch-Nyhan syndrome, a rare, inherited neurologic condition often accompanied by muscle stiffness, abnormal postures, jerking movements, and flailing of the limbs. These problems have made it very difficult for him to enjoy almost any independent leisure activity despite his fun-loving disposition, explains his mother, Jaren.
After trying unsuccessfully to find an affordable, special-needs tricycle, his family decided to adapt their own. A few months ago, they asked the owner of a local bicycle shop if he had a tricycle (trike) that could be used by both able-bodied and disabled children. The Wicklunds tried a few out, settling on a moderately-priced EZ-TriClassic SX made by Sun Bicycles. The owner of the shop modified the trike, replacing the standard crank arm with a smaller one having multiple pedal positions, switching out standard pedals with larger ones that allow straps to hold Davey's feet securely, and angling the seatback adjustment bars to allow for a more reclined sitting position so that Davey can lean back while pedaling.
Finding Sports and Exercise Opportunities
Ask your physician, physical therapist, and local rehabilitation center or support group for suggestions on exercise classes and team sports. Call area health clubs to ask if they have trainers who specialize in working with people who have disabilities or a swimming pool with aquatic therapy classes. The following organizations may also be able to offer suggestions: American Association of Adapted Sports at adaptedsports.org; and Disabled Sports USA at disabledsportsusa.org
“Now Davey proudly races his trike around our quiet neighborhood streets. He feels the joy of self-directed speed and is able to move his legs quickly for exercise, more so than with any other activity. He loves riding the trike and wants to keep using it until he is nearly exhausted,” says his father, David. The Wicklunds are grateful they have found a way for their son to enjoy a heart-pumping outdoor activity. “It was gratifying to hear him announce that he feels like a normal kid, seeing himself finally able to do what other children can,” David says.
REDISCOVERING HER INNER JOCK
Three years ago, Leanne Smith was a well-rounded college junior, active in gymnastics, softball, and soccer, pursuing a degree in sports management, and working at her local YMCA in Salem, MA, as a gymnastics coach. But the sudden onset of facial droop and numbness, tingling, and weakness on her left side changed that. She spent the next five months in the hospital as doctors tried to figure out the cause of her symptoms. It was not until January 2012 that a movement disorders specialist at Massachusetts General Hospital diagnosed dystonia, a neurologic condition causing abnormal muscle tone. Dystonia has left the 25-year-old Smith dependent on a wheelchair. She has limited use of her left arm, is unable to use her left leg, and experiences tight, spastic muscles, although treatment with muscle relaxers and botulinum toxin has helped.
Having been an athlete while growing up, Smith felt a huge void in her life because of her dystonia. In October 2012, a physical therapist encouraged her to try aquatic therapy. Although she was terrified at the thought of entering the water, she quickly fell in love with the activity and joined the Massachusetts YMCA of North Shore swim team. After a few months, her coach entered her into her first swim meet in May 2013. Water's buoyancy decreases the effects of gravity while still providing resistance. Water also allows Smith to achieve more mobility. She has found, for example, that swimming on her abdomen provides her a greater range of motion in her hips and shoulders. She now trains daily with a group of about 45 swimmers, who go through the rigorous drills together.
Smith's success opened her to the possibilities of other sports. She eventually found Northeast Passage (nepassage.org), a therapeutic recreation program funded by the University of New Hampshire, and was intrigued by their sled hockey program. She had always been a giant Bruins hockey fan and was drawn to the thought of engaging in team sports with other people facing challenges. When she finally worked up the courage to contact the organization in January 2013, she was invited to a practice session. “I loved it immediately,” says Smith, who picked up the skills relatively quickly. “It wasn't a struggle like everything else had been over the past two years,” she recalls. She enjoyed being with others on a team, practicing on weekends, and playing in fund-raising tournaments. Smith returned to college in February 2013 at Southern New Hampshire University. She is currently studying full time and expects to graduate in May of 2015.
Smith says her biggest challenge was overcoming her frustration in learning new ways to move. “Don't focus on your disabilities. Instead, focus on what you are still able to do. If you can change your attitude and are willing to put in the time and the work, so much is possible,” she says. Smith just demonstrated how far a person can go with that attitude by making the U.S. Paralympic Swim Team. Her next goal? To represent the United States at the 2016 Paralympics in Rio de Janeiro, Brazil.
“My biggest regret is not having gotten involved with team sports earlier on after my accident,” says Nathan Loomis. He was a 19-year-old art history major when a body surfing accident in shallow Caribbean waters left him quadriplegic. After four months at a rehabilitation center, he returned home to live with his family and attend outpatient therapy; eventually he was able to use a manual wheelchair. When he graduated from college in 2007, he decided to try quadriplegic (quad) rugby. “From the first crash into another wheelchair, I was hooked,” says Loomis, who is now competing in his seventh season for the New England Regional team. (The wheelchairs use specialized armor to absorb impact.)
“Physically, I've gained a lot of strength and lost weight,” says Loomis. He has increased muscle mass in his shoulders, which enables him to go up ramps and hills more easily. Equally important is having a source of stress relief and a peer group with whom to share stories and resources, he says. Loomis works for an information technology company part-time and trains a few times a week. In addition, he devotes time to volunteer work, including demonstrations at schools and visits to hospitals.
Loomis observes that his teammates who became involved with the sport immediately following rehabilitation seem to have gained independence much faster. “After a traumatic injury, you are so focused on what you've lost that you can't see the opportunities that are in front of you and the things that you can do,” Loomis says.
You don't have to have competitive drive or the heart of an athlete to work out if you have a neurologic condition. Many gentle fitness routines are available, including stretches, dancing, yoga, tai chi for people in wheelchairs, and many more. Carol Enseki, who was diagnosed with Parkinson's disease (PD) in 2000, went to her first Dance for PD® class when she retired from her job as president of the Brooklyn Children's Museum in 2010. Inspired by friends—some of whom were in their 80s—she began to dance regularly and recently participated in her first performance at the Mark Morris Dance Group in Brooklyn. “You can benefit even if you've been a couch potato all your life,” Enseki says.
Dancing motivated her to increase her stamina and abilities by lifting weights and adding aerobics to her routine. “Dance helped me realize that I am not defined by PD,” says Carol, who is a member of the Brooklyn Parkinson Group. At 59, she is one of the youngest dancers who recently participated in a public performance. Three of the performers are older than 85, and one has had PD for more than 25 years. “We feel like a group of dancers, rather than a group of patients,” she says.
Dance for PD®, which offered one of the most popular demonstrations at the American Brain Foundation's Brain Health Fair for the past two years, has expanded beyond its 2001 inception in Brooklyn to over 100 communities across the United States and to nine countries. It also launched an at-home DVD, which is available for purchase. Ivan Bodis-Wollner M.D., D.Sc., director of the Parkinson's Disease and Related Disorders Clinic, Center of Excellence, State University of New York, Downstate Medical Center, says, “Any physical activity is good for most people with neurologic conditions, but what makes dance special is not only the exercise, but that the elation provided by music is also therapeutic.” While traditional physical therapy involves repetitive activities, dance allows people to express themselves, and the enjoyment and sense of accomplishment can last for days, according to Dr. Bodis-Wollner. “It also has a very good effect on the caregiver,” he adds, having observed how often it also helps relationships with partners.
FOR MORE INFORMATION
* For more Neurology Now articles on exercise, go to bit.ly/1lL8jI8.
* To read a Patient Page on whether exercise can prevent Alzheimer's disease from Neurology, one of the American Academy of Neurology's medical journals, go to bit.ly/19NwINl.
* To read articles on exercise from Neurology Today, another publication from the American Academy of Neurology, go to bit.ly/1iL28GM.