Doctors face a unique challenge when looking to improve physical function and coordination in cerebral palsy patients because those with the disorder have had motion disabilities their entire lives.
Unlike a stroke victim, for example, those dealing with CP are not re-learning a task or how to use both hands but are instead learning skills for the first time. For most people, eating a bowl of soup or operating a television remote control are everyday actions, but people with CP may go their entire lives never having done them without outside help. Children with cerebral palsy are used to compensating for impaired function, doing things such as favoring one hand over another.
CP is caused by damage to developing brains and is the most common pediatric-onset neurological disorder, affecting nearly one in every 300 babies. Signals get jumbled between the different sections of the brain in those affected with CP, leading to a lack of dexterity with physical motion and speaking.
Kathleen Friel is the director of the Clinical Laboratory for Early Brain Injury Recovery, which opened last year at White Plains”™ Burke Medical Research Institute. Children who attend an intensive activity-based day camp there are often resistant to therapy in the early stages because they have never known anything but life with CP, and having a parent handle tasks such as tying their shoes for them. They tell her, “I can do it my way.”
“Some kids don”™t yet appreciate what independence means,” Friel said. “They can learn if they do these things, there are a lot of other things they can do, too.”
Friel herself has cerebral palsy. She is acutely aware of the historical lack of effective therapies for CP sufferers and a history of treatments that included muscle-lengthening surgeries and Botox injections. Muscle-lengthening and invasive surgeries are fundamentally different to Friel”™s work because they are simply attempts to compensate for CP impairment, while Burke”™s research arm has a stated goal of not just decreasing disability but seeking recovery solutions. The older treatments are akin to teaching someone with a foot injury how to use a cane rather than teaching him or her to walk again.
That Friel has struggled with CP has helped her gain specific insight into the issues the children are facing. “It”™s better to develop (the program) if you know what”™s going on,” she said. “And I think it”™s good to show kids I can do stuff.” She added that the day camp environment, putting together groups of children with CP, also helps the children understand that their problems aren”™t unique.
Dealing with children has its own challenges, which Burke”™s program was designed to address. Campers participate in therapy in the form of games and activities ”“ even Monopoly ”“ so they are not focused on doctors having them run through a particular physical motion over and over. Repetition is key, and keeping children interested in the repetition is where the games come in.
“If you tell a kid to grab something, that is boring, but if you tell them to play Checkers, for example, they like it even though it is the same motion,” Friel said.
The work at Burke in White Plains combines the study of brain function with the hand therapies. Using mapping technology, Friel is able to diagram what parts of the brain control hand function. Children that attend the intensive therapy camp show marked improvement not only in their hand motion and coordination but even in the mapped function of the brain, Friel said.
Burke uses what is called noninvasive transcranial magnetic stimulation to electrically stimulate movement. In that process, a doctor waves an energy wand near the patient”™s head in a targeted area, which then painlessly stimulates motion in the hand. Further development of that stimulation, Friel said, could result in “more robust” improvements. Burke is the only institute in the Northeast doing such work, and one of only about 10 labs in the country.
Robot-led motion therapy is also being utilized for CP sufferers and other Burke patients receiving therapy as a result of brain injury.
Friel, who is an assistant professor of neurology and neuroscience at Burke”™s academic affiliate, Weill Cornell Medical College in New York City, said she remains focused on the small steps to improving cerebral palsy sufferers”™ quality of life. Although there may not be a big medical breakthrough on the horizon, making people”™s daily lives better is as good as it gets, she said.
“I always get some encouragement when I see kids make even small gains,” she said. “For them, it”™s as big a breakthrough as anything.”
She’s an amazing role model for all CP persons, but she’s also an incredible human being!!