Exercise has long been hailed as good for the body and mind, regardless of people’s abilities or levels of fitness. But for people with CP, who are at high risk of chronic diseases, physical therapy and exercise are vital components to staying strong and healthy…
Anyone can improve their health with exercise and movement. Still, for the CP community, who often experience muscle tightness and symptoms of early aging, the stakes for wellness are even higher.
“Adults with CP have a higher risk than people who don’t have CP for cardiovascular, renal, musculoskeletal (bone and joint problems), and respiratory disease,” says Dr. Ed Hurvitz, Chair of Physical Medicine and Rehabilitation at the University of Michigan. “The common pathway is inflammation. People who are obese, who have poor fitness levels and don’t move around enough, have a high level of this inflammatory state.
This may be one of the things contributing to the higher risk of chronic diseases in adults with cerebral palsy.”
The American College of Sports Medicine recommends that adults do at least 150 minutes per week of moderate-intensity, heart rate raising, exercise, and muscle-strengthening activity at least twice a week.
“There is no evidence to suggest that these requirements should be any different for people with cerebral palsy,” states guidance from the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM). “Many people with cerebral palsy are very physically inactive, and these recommendations may be quite difficult to achieve.
“Some exercises may not be possible, depending on the severity of cerebral palsy. The good news is, many health benefits may be achieved by doing less than the recommendations. Being fit and exercising should not be considered all-or-nothing. Start small, become familiar with aerobic and resistance exercise, and gradually progress exercise time, frequency and intensity. It is better to stick with a program than to do nothing, simply because you cannot reach the recommended levels.”
So how can the CP community build stamina and strength? As an extension of physical therapy, many people with CP are encouraged to participate in adaptive fitness – otherwise known as personal training adapted to their abilities. Such training sessions could include cardio, stretching, strength training, core work, and gentler movements such as Pilates.
An ongoing hurdle for our community is how the fitness and exercise industry is predominantly tailored to the majority-abled. Thankfully, as we shift into a more accessible society for all, inclusivity is on the minds of many organizations. All over the world, multi-million dollar brands such as Peloton acknowledge the need to be more adaptive.
“Accessibility is very important to us, and our teams have been actively working on the implementation of more accessibility features, most recently for the visually impaired on our software and hardware,” an accessibility spokesperson told the CP Research Network in an email. Members of our community were also encouraged to join Peloton’s member focus groups to test accessibility.
Meanwhile, changemakers like adaptive fitness coach Steph “The Hammer” Roach are paving the way to empower differently-abled athletes.
Roach, the first woman with cerebral palsy to become an L2-certified Crossfit coach, was the owner and manager of a gym in North Carolina when the pandemic hit in 2020.
Determined to turn the experience into a positive, she quickly pivoted to build an online fitness organization Staying Driven providing all-inclusive adaptive training classes for a low monthly cost.
The organization provides programs and coaching and a supportive community to help everyday people achieve a greater fitness potential. Classes range from mixed ability work-outs to classes specifically for spinal cord injury athletes or the developmentally challenged.
“In this time of isolation, you can still be engaged to be fit, athletic, and social,” says Roach, who says she saw a real need for accessible adaptive fitness for people across the differently-abled community. “Making it fun for athletes is pretty awesome, and I love seeing their transformation week after week. It’s not about lifting heavy weights; it’s really cool when an athlete comes to you and says, my doctor says my blood pressure is awesome. My doctor says I’ve lost 8lb, and I’m feeling great.”
Roach’s clients include Alex McGee, 25, who has moderate CP and uses a posterior walker. He discovered StayingDriven in a CP support group at a time when he felt isolated and that he had lost confidence,
“When you have CP, you always need physical exercise and to stay in shape because otherwise, you’ll lose it,” he explains. “It’s very hard to find things for adults for CP. If it were up to my physician, she’d have me come in twice a week for PT, but with insurance, that’s not possible. My therapist and I talked about adaptive fitness.”
Alex attends weekly Staying Driven classes online, working out via Zoom at the home he shares with his parents in Florida.
“It’s hard, but doing it feels really good,” he says. “Core is important for the ability to walk, so I work with a core ball. The instructors adapt the exercises to the capacities of the people attending. They ask for concerns and tell you to use a chair if you need it. You can work out sitting down or standing up. They give you the option. I work out on the carpet in my bedroom for safety, so it’ll be alright if I fall. Some days you have better balance than others. We know our bodies better than anyone else.”
As well as feeling physically stronger, Alex says he has noticed mental health benefits from attending a group class. He has come to view his fellow athletes who turn up week after week as friends.
“Most of the time, it’s the same people, so the group class is a social benefit,” he says. “There’s social interaction, and they tease me pretty good. If you’re trapped in the house, then I recommend it.”
Staying Driven broadcasts interactive classes twice a day, Monday to Friday and once on Saturday. Athletes are charged $20 a month and can take any hour-long class.
Participants are required to sign a safety waiver to ensure they are willing and able to do the sessions. Roach advises finding the right balance between challenging and safe.
“We don’t require any particular equipment, and athletes use things they have already like water bottles or pillows,” adds Roach. “I’m a huge advocate of exploration and allowing people to realize what they can and can’t do on their own.”
Many people with cerebral palsy benefit from a multifaceted approach to managing their condition, combining regular therapies, exercise, and a healthy diet and lifestyle. The CP Research Network is partnering with the National Center on Health, Physical Activity and Disability (NCHPAD) to enroll ten CP community members in a free MENTOR program focused on health, wellness, exercise, mindfulness, and nutrition. Read more here .