There are a lot of things Dr. Mindy Aisen wishes people understood about cerebral palsy, probably enough to make a top 10 list.
1) It’s not a disease. It’s a disorder or developmental disability. It is not progressive, degenerative or communicable.
2) It isn’t really one disorder but a category of similar neurological impairments noticed in infancy.
3) Most people with cerebral palsy have no mental impairment and many — perhaps an unusually high proportion — pursue careers in science, medicine, law and other high-skill professions. ….
Aisen, a Potomac resident who took over Nov. 1 as the director and CEO of the nonprofit United Cerebral Palsy Research and Educational Foundation, knows that demystifying cerebral palsy is an uphill battle.
The very name is arcane. What does “palsy” mean, anyway? People feel more comfortable donating to more familiar medical causes.
“It sounds sort of crass, doesn’t it, that ... we’re competing with cancer,” Aisen said in an interview at her home near Piney Meetinghouse Road. “Everything’s important. But that’s the reality. It’s hardly an idyllic world.”
AISEN IS FORTHRIGHT in talking about the cerebral palsy universe, an approach that seems aimed at unraveling the discomfort of those unfamiliar with the disorder. Some of the messages are standard fare for medical research nonprofits — that education is key, that researchers need more dollars, and that people with cerebral palsy have the same needs and desires as others.
But Aisen’s experience with the disorder doesn’t fit neatly into clichés.
One surprise: that everything Aisen learned in medical school about treating neurological impairment was wrong.
“When I was in med school and a resident, I was taught that someone has a stroke you say, ‘Too bad they had a stroke. The way they are in a few months is the way they’re going to be, and the thing to do is to train them to do everything with the strong arm.’ And, in fact, that was completely the opposite of what was best for them,” she said.
Prior to joining UCP, Aisen spent most of her career in patient care, working with veterans with disabilities and spinal cord injury patients. Current research and Aisen’s own experience point to therapies based on neural plasticity, the idea that nerves can be retrained to carry out tasks thought to be lost; that the nervous system, given a bit of encouragement, is extremely resilient.
“Practicing a motor task intensively can lead to better recovery,” Aisen said. But while adults can understand the benefit of putting in hours of physically painful work on therapies that will improve their mobility, young children can not do so at the very time when such therapies are most needed. That’s why Aisen has taken an interest in robots, virtual reality programs and, yes, video games, that induce the desired movements.
Another surprise: cases of cerebral palsy are increasing in tandem with improvements in medicine.
“The reason that cerebral palsy is not diminishing is that there’s a lot more infertility treatments, more multiple births, more premature babies born and the neonatal intensive care people are so much better than they used to be,” Aisen said. “These very low birth weight premature babies are living — they didn’t use to live — and about 1/3 of those babies end up having cerebral palsy.”
That doesn’t mean that advances in neonatal care aren’t a good thing. No one wishes to have a child with a developmental disability, but parents who do mature more quickly in some ways than other parents.
“Parents of kids with cerebral palsy, they come to terms with this very early. They’re much calmer by the time that first grade, second grade, third grade rolls around and some of the other children are starting to have difficulties that were more intellectual,” Aisen said.
THESE ARE some of the conundrums presented by a medical field where prevention is a natural goal, but a distant one. Strokes, spinal cord injuries, and the natal and infant diseases that often cause cerebral palsy are likely to continue, so most of the research in neurological disorders is aimed at improving quality of life.
Aisen became involved in the field because of her 14-year-old nephew, who has cerebral palsy.
“He was [premature] and his dad was an OBGYN and they didn’t know much was wrong until he was about a year old, at which point his milestones were really delayed and he was clearly stronger on one side than the other,” Aisen said. “When his father realized that he had cerebral palsy, he wrote my sister a letter and he said, ‘I need more beauty in my life and I was hoping for a perfect child.’ So he walked out.”
The nephew can walk, his motor skills are good, and he is intellectually sharp when it comes to reading, vocabulary and creative fields. But he has serious difficulty with quantitative tasks like telling time and adding and subtracting.
He did well in a public elementary school but in middle school he became more aware of his differences from his peers and became seriously depressed and, later, suicidal.
“I think his experience is very typical,” Aisen said. I think there are divorces over the child. I think there are much greater stresses on marriages because of a child with a disability.”
Aisen’s nephew is now in private school and doing much better.
“There’s a sort of hidden blessing in it. You’re more grateful for the kid,” Aisen said. “I think the parents who have these kids who effortlessly grow up and make friends and do OK in sports and do OK in school, I think they end up being depressed and upset about nonsense like soccer teams and competitiveness that are so unimportant in the grand scheme of things.
“It’s sort of like you have this early pain. It’s like a brush with death or something — you see the world very differently and you’re really grateful for small things.”
IN TEACHING a non-traditional version of Cerebral Palsy 101, Aisen hopes she can have a role in putting the disorder on the research and fund-raising radar screen, alongside breast cancer, lung cancer and heart disease.
She said that a group of Potomac residents, including several United Cerebral Palsy board members, donors, and other contributors have been vital to advancing the group's mission. There was a “Potomac table” at a recent fund-raiser for the group honoring U.S. Sens. Chuck Grassley (R-Iowa) and Jeff Bingaman (D-N.M.). Other honorary guests at that event included former Federal Reserve Chairman Paul Volcker and actress Cheryl Hines of HBO’s “Curb Your Enthusiasm.”
“Every nonprofit is out there with a good cause and obviously attracts those folks that have a personal connection to that cause,” said Patricia Block, a Potomac resident and incoming member of the UCB board. “The hardest is to get to the people that don’t have a family member or a friend or someone who is afflicted with a particular disease. That’s really the key in the education process — finding a way to connect with, to touch folks who don’t see it in their daily lives.”
Block sees the Internet as a still largely untapped resource for nonprofits in carrying out that mission.
“I would hope that the Internet would play a pivotal role in the education process,” said Block, an attorney and businesswoman whose mentor has cerebral palsy. “There’s a lot of info out there if people avail themselves of it.”
Working with Block and others, that’s exactly what Aisen hopes to help people do, even if the lessons aren’t always what people expect.