Sarah Cohen, PT, DPT, a Sag Harbor resident who moved to the East End after graduating with a Doctor of Physical Therapy degree from Columbia University in 2007, is a staff therapist at Stony Brook Southampton Hospital. With a primary clinical interest in neurologic physical therapy, focusing her research at school on movement disorders and continuing the develop that expertise as a clinician, Cohen became certified in LSVT Big, a specialized therapy for those with Parkinson Disease in 2013. She observed clinically that many patients showed dramatic improvement with physical therapy and exercise. “The research supports my clinical observations, suggesting an incredibly important role of exercise in slowing disability progression for this patient population. And, thus, I started one year ago drafting a proposal for a community-based wellness program for people living with Parkinson Disease,” says Cohen, who is now the program manager for the Parkinson Disease program at Stony Brook Southampton Hospital, and talked to Express Magazine about what that program has to offer
Last fall, the hospital’s Center for Parkinson Disease was introduced bringing wellness programs, support and education to those living with Parkinson, and also their families. What kind of demand was there for this kind of initiative?
When I discharge patients from physical therapy, I attempt to create and support a continuum of care for the individual, transitioning from therapy to an exercise program in the community. I was having an increasing difficult time doing so for my patients with Parkinson Disease. In addition, we have an active and wonderful PD support group run by the APDA at the hospital. I presented at the support group on two occasions, talking about the importance of exercise, and on both occasions the participants would ask me, “Where can I do this? How can I exercise more?” I realized there was a dearth of programming and community resources on the East End for people with PD, and a wonderful, active group of people who could benefit from such services.
Can you explain what Parkinson Disease is, and how it affects the body?
Parkinson Disease is the second most prevalent chronic, neurodegenerative disorder affecting approximately 1 percent of the population over 60. Dr. Bastiaan Bloem, a neurologist, Medical Director at Radboud University Nijmegen Medical Centre and researcher doing great work in the field, commented at a recent lecture I attended that the prevalence of PD has doubled in the past 25 years and is expected to double again in the next 25 years. Parkinson Disease is a movement disorder characterized by loss of the neurotransmitter dopamine and the death of dopaminergic cells in the part of the brain called the substantia nigra responsible for planning and coordinating movement. The hallmark motor symptoms include: resting tremor, rigidity (or stiffness), bradykinesia (slowness of movement) and postural instability (balance problems). It is important to recognize a host of challenging non-motor symptoms, including loss of smell, apathy, constipation and mood and sleep disorders. The cause of Parkinson Disease is not fully known. While there might be a genetic component, that only accounts for a small number of diagnoses. The truth is we don’t fully appreciate why the incidence of PD seems to be increasing and what causes the disease.
What are some of the rehabilitation services available for Parkinson patients through the Center?
We offer LSVT Loud, an evidence-based speech therapy program, which includes 16 one-on-one treatments administered over the course of one month by a certified speech language pathologist. We also offer LSVT Big, a specialized therapy program that also offers 16 one-on-one treatment sessions over a month focused on intense, large amplitude exercises, sensory recalibration and self cueing.
The Center has partnered with organizations like Parrish Art Museum to offer Paint the Parrish arts program, and has also introduced programming related to dancing and song. What are the health benefits for someone with Parkinson in being active in performing and visual arts?
I have to be honest, there is not a lot of research yet looking at the therapeutic value of appreciating and participating in the creation of visual arts for people with Parkinson Disease. There is a research project in progress at NYU, I believe, related to art and PD, and I eagerly await their findings. There are, however, at least preliminary reports suggesting an improvement in self-reported quality of life measures. Our arts program has been developed in collaboration with the Parrish Art Museum and the American Parkinson Disease Association. It is truly unique in that it combines both gallery tours as well as time in the studio for hands-on, multimedia projects. The program has been fully subscribed since its inception. The Parrish staff and museum are just exceptional, and I can speak at least anecdotally to the impact such a program can have on improving quality of life, creating social connections and forging new friendships.
There is more research looking at the therapeutic effect of singing on voice production for people with PD. Music therapy, and in particular group singing instruction, may benefit individuals with Parkinson Disease, leading to improved muscle function and resulting in improved voice intensity, speech production and respiratory function. The group format of the singing group creates a social setting that fosters a sense of camaraderie and, as I mentioned above, social connections. Our Therapeutic Chorus program is a collaboration between Stony Brook Southampton Hospital, the Southampton Arts Center and is being developed by Lee Morris, a neurologic music therapist at St. Charles and Valerie DiLorenzo a singing coach and entertainer with years of experience. I am blown away by the expertise and experience of our instructors – it’s going to be a top-notch program. We hope to launch May 3 – more details to come soon.
What has been the response to some of this new program from Parkinson patients and their families? Do you envision the programming growing?
The response has been overwhelming. We launched the program last September with our Rock Steady Boxing program developed in collaboration with Epic Martial Arts here in Sag Harbor. We started with 5 boxers and now have over 30 boxers in Sag Harbor, a new RSB program in Hampton Bays, Tai Chi starting in Hampton Bays next week, yoga instruction at the hospital and the wonderful arts and music programs I have already mentioned. The camaraderie and dedication of this community is incredible — we had 40 people come out in the rain and dark for a boxing holiday party last December, and as I have already mentioned, we have observed new friendships forged and strengthened. As Michelle Del Giorno, our Sag Harbor coach, stated: “we laugh, we cry, we hug and sweat and yell together.” It is an inspiring community, and I am so grateful to be a part of it.
As for future growth: we plan to offer Tai Chi for PD at the Riverhead Free Library this summer and will launch our Dance for Parkinson’s program in the next few months. I have other program ideas in development including a Nordic walking program, tandem cycling and LSVT Big “graduate” program at the hospital, pending funding and interest. It anyone is interested in providing financial support for the program or would like information about existing programming, they should feel free to reach out to me at (631) 726-8800.