Before he became a patient at the Weinberg Family Cerebral Palsy Center, Jason Lieberman had to be patient with the healthcare professionals who treated him. By the time he got to college, Jason would often have to walk his physical therapist through his treatment plan. His longtime neurologist and unofficial primary care physician Dr. Arnold Gold, the former Chair of Columbia’s Pediatric Neurology Department, was the only healthcare professional who understood how to treat him effectively.
“He was one of the first to truly understand continuous care for adult patients with CP,” said Jason. “I was his patient for decades – we went back so far that he was also the doctor who diagnosed me.”
After Dr. Gold retired in the early 2000s, he had difficulty finding a doctor who would treat adult patients with CP. Many of the doctors he visited were at a loss in figuring out how to treat him.
“Most pediatric neurologists didn’t want to treat adults and most adult neurologists didn’t know how to treat cerebral palsy,” said Jason.
How Jason Lieberman Found the Weinberg CP Center
When he developed a hernia, he had trouble searching for a surgeon who understood what the potential complications could be for a patient with CP. Most hernia surgeries allow patients to leave on the same day but Jason knew he needed additional time to recover.
“My wife made it very clear to the doctors that since I couldn’t walk into the hospital, I couldn’t walk out of it,” said Jason.
He knew a pediatric physical therapist at Columbia who understood the ramifications of this surgery. She connected Jason to orthopedists at the Weinberg Center, who helped explain to the general surgeons in charge of his hernia operation on how to take care of it without risking serious complications. She also helped him find a primary care physician who could refer him to a specialist at the Weinberg CP Center.
“I go to a physiatrist once a month since they treat my spasticity,” said Jason. “I go to a primary care doctor once a year since my physiatrist knows more about my body.”
A Multidisciplinary Cerebral Palsy Care Network
The Weinberg Center has been instrumental in pointing Jason to the right specialists. Now he has a neurologist that he’s seeing who understands any comorbidities related to CP. During a recent gastrointestinal illness, he was able to easily see a gastroenterologist who understood how his symptoms interacted with cerebral palsy.
“The CP Center was able to get me in, but if I called on my own I wouldn’t know who to see,” said Jason. “The specialist had a waiting list but the CP Center was able to get me in quickly.”
By going to these specialists well-versed in CP, it made Jason’s regular visits to the doctor much less stressful.
“Now I can be the patient and not the teacher,” said Jason.
Room for Improvement in CP Care
Although the Weinberg Center is at the forefront of transitioning pediatric patients to adult care, many in the wider healthcare community encounter a multitude of challenges when providing treatment or seeking care for adult patients with CP.
“Most adult patients with CP will live the lifespan of the average American,” said Jason. “Most adult specialists don’t have experience with CP. They should reach out to previous doctors or be aware that adult doctors may not be as familiar. The system still treats CP as if it were just a childhood condition but it isn’t. There are only so many patients with CP one neurologist or orthopedist can see at a time.”
Jason believes the best solution may be the simplest: better communication with patients and doctors across specialties.
“Doctors shouldn’t be afraid to say ‘I don’t know,’” said Jason. “Your patients are an amazing resource. Reach out to other specialists who may have more experience with treating patients with CP. If you feel uncomfortable treating a patient with CP, let them know and refer them to someone who may be a better match.”
What to Do When Talking with Your Doctor
Jason believes strongly that patients with CP also have to become self-advocates, particularly when transitioning from pediatric to adult care. He advises patients to do in-depth research about their conditions ahead of time, since the average doctor’s visit is approximately 15 minutes.
“There needs to be a balance between how much a patient needs to self-advocate and how much doctors need to take CP into account for their diagnosis,” said Jason. “Advance preparation and self-advocacy can help the healthcare team distinguish what symptoms may be related to CP and what is a part of the illness/injury that needs to be treated.”
Most of all, Jason wants patients to know that any long-term diagnosis isn’t final.
“Don’t presume pediatric doctors know what will happen 20 years down the line,” said Jason. “Technology changes. Medicine changes. You can change. It may happen slower, but you can still live to your absolute potential.”