April | 2019
Program Director's Note
April is National Parkinson’s Awareness month! This represents an opportunity to spread awareness for Parkinson’s Disease, while also, I believe, celebrating the amazing community here on the East End. For me, personally, it offers a moment of pause from my daily routine to reflect on where we have come as a program and to renew my commitment to continue growing this program in the direction that best meets your needs.
 
Our programs continue to be successful, thanks in large part to your support. Our Sing Out Loud chorus has grown and is now being offered at the Riverhead Free Library, as well as at Guild Hall in East Hampton. We have a total of 30 dedicated singers! The Parrish Art Museum continues to generously host the Paint at the Parrish art seminars, allowing unique access to the museum, as well as opening up the studio for hands-on projects curated by their teaching artist. Our Rock Steady Boxing program has trained additional coaches and assistant coaches to accommodate program growth. Finally, we have several new programs in development. Starting May 13, the John Jermain Memorial Library in Sag Harbor will host once-monthly Ping Pong Mondays! In addition, I hope to be able to announce shortly the introduction of a nutrition and cooking seminar series, incorporating nutritional education with cooking instruction, using local, seasonal foods and culminating with a shared meal. Stay tuned!
 
I am unbelievably lucky to be able to provide all of our programs at no charge. Financial support comes from Stony Brook Southampton Hospital, the American Parkinson Disease Association, many of our collaborating institutions, and of course, from donations from many of you. I extend a heartfelt thank you to all who have generously supported the Center for Parkinson’s Disease, and I am grateful to be moving forward together!
 
With gratitude,
Sarah
For this past session of Paint at the Parrish, participants were inspired by landscape photographs taken by the artist Renate Aller. These images are presented together in her exhibition titled Space Between Memory and Expectation , which includes a gallery installation of 12 large-scale prints. Featuring works drawn from her ongoing series Ocean | Desert and Mountain Interval , the exhibition draws together disparate landscapes through the continuity of the horizon line. Dramatic images of the Atlantic Ocean, vast sand dunes in New Mexico and Colorado, and the majestic mountain ranges in Alaska, Switzerland, Italy, and Nepal all come together in this display. Participants referenced these images to create their own watercolor landscape paintings. Similar to Aller, our artists used a limited color palette of blue, black, purple, and brown. Teaching artist Wendy Gottlieb introduced a bamboo brush technique, which could be used to create various types of lines. She also discussed how to incorporate shading to create the illusion of depth and perspective. Our artists took to the challenge and created really remarkable artwork!
 
Class Schedule: 1st Wednesday of every month | 11 AM - 1 PM
Did you know that the American Parkinson Disease Association (APDA) is the largest grassroots network dedicated to fighting Parkinson’s Disease? Not only do they support many programs across the country (including our Sing Out Loud and Paint at the Parrish programs), but they also provide much needed education to healthcare providers and community members. The APDA website hosts a webinar series addressing issues such as motor fluctuations, symptom management, mental health and DBS. Check them out HERE!
Guild Hall, East Hampton
The spring session of Sing Out Loud is in full bloom! We moved to our new location at Guild Hall on Wednesday afternoons and have 16 singers. Their positive energy is contagious. Each week Amanda Jones (our accompanist and co-teacher) visits a different theme, composer or genre – so far, we’ve sung show tunes, The Beatles and our “Folk/Hippie” week when everyone knew the words to every song. While the music is our focus, there is space to share and enjoy being together. We love hearing the stories and debates – recounting a Bob Dylan concert, a lively debate on Rolling Stones vs. The Beatles, or simply sharing the reason behind our favorite musicals. Amanda and I look forward to this ever-growing class week after week.
 
-  Valerie diLorenzo, Musical Director
Riverhead Free Library, Riverhead
 
Sing Out Loud, Riverhead has loved being in our new location at the Riverhead Free Library! The enjoyment and camaraderie of sharing a music experience with other people is brought to new heights as Sing Out Loud participants engage in breath, movement and vocal exercises as well as the singing of group-selected popular songs. We have 15 singers, and when Sing Out Loud members get together, the collective voices fill the room with the sound of music, positivity, and empowerment. Sing Out Loud is founded in current PD research that shows that participation in therapeutic singing programs can improve vocal quality, respiratory strength and swallow ability. In fact, group members have the opportunity to take part in a research project built into the program, to track changes in voice and quality of life measures over the course of the 8 weeks. Sing Out Loud provides a double benefit for people with PD and their care partners - it's a fun way to spend a Friday morning, and it can help maintain and even improve vocal function. At the heart of Sing Out Loud are the amazing singers, who come from all over the east end of Long Island. 

- Lee Morris, board-certified music therapist
- Dr. Renee Fabus, Ph.D., CCC-SLP, TSHH, Associate Dean for Research SHTM at Stony Brook University
-Dr. Peter Pece, PhD Neuromusicology, Accompaniment

To register, please call: (631) 726-8800
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“The people who attend, the fighters, are really serious about their training. The camaraderie and support that is built among them is like no other.”
- Michelle Del Giorno, Sag Harbor Head Coach
 
In honor of Parkinson’s Awareness Month, Michelle filmed a short video talking about the benefits of Rock Steady Boxing. Watch her video HERE !
Coach Michelle
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Our boxing program experienced tremendous internal growth in the past quarter. Many of our boxers have demonstrated marked improvements in punching technique and power! I really have to stay attentive when using the focus mitts so I don’t get accidentally knocked out!
We’ve welcomed two new assistant coaches to our ranks, Jenny Steigerwald and Mike Delisio, as well as one new head coach Breahna Arnold. I’m so proud of their completion of the Rock Steady Coaches training course and their ongoing dedication to the program. They each bring a breadth of expertise and compassion that is helping our boxers fight back.
I am continually inspired by the determination of this group of fighters. Whatever comes their way, a fall, a medical set back, a bad day of symptoms, they pick each other up and keep moving forward. I’m so grateful to lead this amazing team of boxers, caregivers, corner-people, volunteers, and coaches. We are a great team that supports each other with a united goal .... FIGHT FIGHT FIGHT!!!
Coach Seth
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Parkinson’s! What? Me? NO WAY!!
 
After the initial shock of a PD diagnosis, what do you do? My husband and I started to gather any information we could to guide us. We attended a presentation on Parkinson’s at the Hampton Bays Library… and so it began.
 
We were introduced to Sarah Cohen and Rock Steady Boxing. My first thought was …. boxing ? Not for me! But, my husband said “you’re going!”

I was never an athlete, but Rock Steady Boxing is so much more than boxing. It’s a place where exercise, boxing, and emotional support come together. Seth, our coach, as well as our assistant coaches and volunteers make it not only therapy – but fun! All the while, with the music roaring in the background (my favorite part!
Rock Steady Boxing puts PD in perspective. Parkinson’s is not a disease where you can take a “wait and see” attitude. You must keep moving and Rock Steady Boxing is a perfect blend of mind and body movement.
 
I’m not sure where PD will take me … but one thing I know for sure is Rock Steady Boxing will be a part of my journey!
 
Mary T. Calise, Hampton Bays Boxer

A Message from our Medical Director

Parkinson’s Disease is absolutely NOT “the beginning of the end.” As a neurologist with many PD patients, I can assure you that correct medication combined with proactive action, PD symptoms can be lessened and controlled to the point that a long and fulfilling life can be lived. What proactive actions can a PD patient and the patient’s family take? Perhaps the most important action is to know PD. By becoming knowledgeable about PD, one can better understand the disease and what can and should be done. Visit the website “Parkinson.org.” Find a neurologist who regularly treats PD patients. Assemble a team of family, friends and caregivers who can provide support when support is needed. Establish and commit to a moderate and  enjoyable  exercise routine that is within the PD patient’s ability. And don’t forget to take your doctor’s advice: “Never stop to smell the roses. With PD, one must  get moving  to smell the roses.” April is Parkinson’s Disease Awareness Month. April is a great month to refresh, re-commit and rejuvenate our spirit. Though April can be a bit rainy at times, I always remember that April showers bring May flowers! By the way, the Department of Health issued the following bulletin: “Optimism is contagious.”

Olga McAbee, MD, FAAN is Director of Neurology at Stony Brook Southampton Hospital.