For Forgotten Adults with Cerebral Palsy, a Center of Their Own

After seeing several doctors for a torn hip ligament, Shoshana Kohr was discouraged. The 27-year-old social studies teacher was working at a Brooklyn middle school, climbing stairs several times a day to and from her classroom on the fourth floor. “Bending my hip that much was causing significant amounts of pain,” she says. “It affected my ability to do my job. I was coming home exhausted. And it was a hassle to walk 10 blocks to meet my friend for dinner or do the things I wanted to do.”

But none of the doctors who saw Ms. Kohr—who has cerebral palsy—was able or willing to help. “I went to several different surgeons, but they were reticent to fix the ligament. They didn’t know how my body would respond to the surgery or what physical therapy I would need to recover from the operation,” she says. “It was frustrating. You come in with a problem and expect to find a doctor to either help you or refer you to someone who can help.”

Through word of mouth, Ms. Kohr learned about the Weinberg Family Cerebral Palsy Center at Columbia, a new center that opened last fall to help adults with cerebral palsy get the medical care they need. The center was funded by gifts of more than $7 million from Debby and Peter A. Weinberg and several of their family members and friends. The gift recognizes the support and care Columbia has given to Mr. and Mrs. Weinberg’s son, who was diagnosed at age 3 months with a rare form of cerebral palsy.

“The image that comes to mind when most people hear the words cerebral palsy is a child with braces, standing up with the support of a white-coated doctor,” says the center’s medical director, Joseph Dutkowsky, MD, associate clinical professor of orthopedic surgery. 

“But half of all people living with cerebral palsy in the United States are now adults, and they get lost in the medical system. Providers don’t know what to do with a 35-year-old woman with CP who wants a checkup.”

That problem also became apparent to the center’s founder, David Roye, MD, the St. Giles Professor of Pediatric Orthopedic Surgery, when the young children he saw in the 1980s and 1990s started to return to him in desperation as adults.

“Cerebral palsy is not a rare disease. There are about 1 million patients in the U.S.,” says Dr. Roye, “but once you leave the pediatric age range, you enter what I call siloed specialty care, and the providers don’t have a lot of knowledge about cerebral palsy or much exposure to patients.”

Dr. Roye’s idea, now a reality in the center, is to provide a medical home for all patients, coordinate their care with specialists, and ease the transition of teenage patients into adult care. It’s the first such center in the country for cerebral palsy patients.

Finding physicians willing to see them is one of the biggest issues for adult patients with cerebral palsy, say Drs. Roye and Dutkowsky. Most patients have stiff and rigid muscles that make physical exams difficult and slow. “It’s not hard to care for these patients, but you can’t figure it out on your own. You need some training,” Dr. Dutkowsky says.

At the center, more than 40 physicians from 20 specialties have signed up to see center patients. “We have doctors in every specialty our patients need, including cardiology, dentistry, and psychiatry,” Dr. Roye says.

Ms. Kohr made her first appointment in April 2012 and by May had a plan for her care. “Dr. Roye is behind the scenes monitoring everything and that’s reassuring. I feel like I’m not seeing a separate doctor for my ankle, my spine, and my hip, even though I am.”

New York City Mayor Michael Bloomberg, left, with Peter A. and Debby Weinberg and P&S Dean Lee Goldman, right, at a celebration of the new Weinberg Family Cerebral Palsy Center

Adult patients with CP also encounter doctors who mistakenly believe that nothing can be done for an adult patient’s cerebral palsy. “The term static has been historically attached to the condition and it’s been a detriment to the field,” Dr. Dutkowsky says. “CP is non-progressive because the condition’s source in the brain doesn’t get worse with age, but people do change. We’re now realizing that problems that are almost unsolvable when patients come back to us in their 40s could have been averted if somebody had spotted them earlier.”

Early joint degeneration is one common problem for middle-aged CP patients, because high tension in patients’ muscles places excess stress on the joint. Dr. Roye says the problem can be delayed with Botox, physical therapy, and sometimes surgery, but most adult providers don’t know the options.

“We can provide specialists with information about common issues in CP and how other conditions like pregnancy will impact their CP,” Dr. Dutkowsky says. 

For Ms. Kohr, the center has changed her outlook. “When you have CP, everything is connected and you need someone to look at the big picture. I’m so happy that I found a place where the doctors have experience with CP and are willing to provide the care. I feel like all of my health care needs are being taken care of now.”

The Weinberg Family Cerebral Palsy Center at Columbia can be reached at 212-305-2700.