Emmy’s Journey to Parkinson’s Connection at the JCC

I was diagnosed with Parkinson’s Disease in Philadelphia on October 1, 2010. It was almost two years after I had noticed worrying symptoms of a left foot that seemed to be slapping the ground as I walked and a very slight tremor in my left leg. First, I spent a year under the care of a local, but as it turned out not very knowledgeable general neurologist who prescribed physical therapy for a “foot drop” and a variety of testing to rule out other causes. He then referred me to a movement disorder specialist in Philly who had a six-month waiting list for an appointment.

Well, it took her less than 5 minutes to diagnose me and then to assure me that I appeared to have a slowly-progressing form of the disease. This news was relatively encouraging and not all that surprising since I recalled that my father had had a very similar initial presentation when he was diagnosed with PD in his late 60’s and a slow progression until his death at 93 from pneumonia. In my case, genetic testing indicated that I have a mutation in the (likely inherited) LRRK2 gene, which meant that if I was fortunate, my “tremor-dominant” condition might be on a slow trajectory and relatively free of pain.

Being a problem-solver by training (I had retired from my legal practice in 2007) and an optimist by nature, I immediately began physical therapy at Penn. With the skilled guidance of a PD-specific therapist over about three months, I learned that I had lost mobility, flexibility, strength and balance,  well beyond a slapping left foot and slightly tremoring left leg.  And I started to learn ways to accommodate these negatives and wherever possible, to reverse them so that my daily functioning could improve.

At the same time, I joined a support group in Philly for women with PD and attended meetings as regularly as I could, given that they were located more than an hour from my home in central NJ.  In addition to presentations by experts in neurology, nutrition, social work, etc., the meetings were a place to exchange ideas. Although I didn’t pay close attention at the time, I do remember mention in those early years of a woman who was running dance classes for people with PD, and of someone who was giving boxing lessons.

Apart from these meetings, I didn’t know any other individuals, let alone anyone local to me, who also had PD and with whom I could develop a friendly relationship and share issues and possible solutions. I had a steady exercise regimen of long, brisk walks almost daily. I wasn’t incorporating either weight training or HIIT intervals into my routine despite everything I was reading about the great beneficial effect of both of these elements and my neurologist’s recommendation at each visit that I try something new. I felt pretty isolated and a little depressed about my health condition.

My focus initially was primarily on “alternative therapies” of nutrition and lifestyle which I found to be helpful and even served to reduce my symptoms which had been gradually increasing (tremor progressing into my left arm and hand, increasing stiffness in my ankles, wrists and fingers). I remained reluctant to sweat more or to try anything that I thought would be too physically taxing.

Fast forward several years to around 2015, when I learned that a close relative who lived in another state was also experiencing symptoms of PD and had enrolled in Rock Steady Boxing classes that he was really enjoying. On my next visit to him, I accompanied him to a RSB class and was very impressed with what I observed, both the physical exertion that everyone seemed to be enjoying and the friendly personal connections among many of the class members.

For whatever reason, however, and although the idea kept surfacing from time to time, I filed this information away and didn’t attempt to locate a boxing class near me until the fall of 2019.  I found a RSB class that was VERY local to me, only about 2 miles from my home. I enrolled in November 2019 and started going 3 days a week. I was the “newbie” in a class of 7-10, depending on the day, and was readily accepted by the group. We had two coaches, one of whom was a personal trainer in his other life and tended to run sessions that were very physically exerting with pretty typical warmups and cooldowns. The other coach was also a yoga teacher and so favored more flowing sessions with more stretching on both ends of the boxing portion. Together, the coaches were a great combination.

I was thrilled to add this more intense physical activity to my life, and  I found that I especially enjoyed the “getting to know you” segment of each class, as I had been thirsting for more personal contact. And then the pandemic hit in early March 2020, and live classes were suspended. After a few months of “focusing inward” amid the chaos and waves of anxiety that were so common to everyone, I learned that the women’s support group had “gone virtual,” which meant that I could start attending the meetings regularly again. At my first meeting toward the end of June, I asked for more info about the boxing classes I had first heard about so many years before.  And of course, it turned out to be Rock Steady Boxing!

This time, I immediately followed up on the lead and contacted Stacey Macaluso, who runs the “Parkinson’s Connection” out of the Katz JCC in Cherry Hill, NJ which is about an hour from my home. They had been operating on a virtual platform for almost 5 months by then and were offering RSB in addition to several other classes. Stacey was very welcoming and scheduled an evaluation for me right away so that I could start participating in the classes on July 1.

From the very first session, I knew that I would love Rock Steady Boxing on this virtual platform. Stacey is an amazing woman, with a background in physical training AND yoga (as well as Pilates, spinning, Barre and Dance for PD). She has the ability to motivate all of the participants to do their physical best while connecting as friends with each other.  Both Stacey and our other coach, Melanie, conduct sessions in which the physical exertion is very challenging, and the feelings of mutual support among classmates are strong.  Each class feels entirely new, with very little repetition in the specific routines although the class structure remains similar from day to day.  No chance for boredom, ever.

Stacey encourages us to be fierce advocates for ourselves on all fronts – not only physically by stretching our limits as much as possible, but also intellectually, by taking advantage of the frequent webinars she arranges on a variety of topics that are critical to our wellbeing as individuals living with Parkinson’s. In class, she and Melanie present each of the warm-up and cooldown exercises and the boxing moves in such excellent detail that their coaching tips remain in our minds from session to session and help us to improve.

Both Stacey and Melanie employ a lot of humor at the same time as they train us with all seriousness. Thanks to their “getting to know you” segments and the way they lead classes, I have been welcomed into a community of boxers who were fortunate to know each other in live sessions at the Katz JCC before the pandemic. And thanks to the pandemic (if I can believe that I’m saying that!), I have been fortunate to participate via the virtual platform in Rock Steady Boxing with an ever-growing group of people whom I now view as my friends.  Those little “Brady Bunch” boxes in the Zoom “gallery view”  help me know that we are all in this together, whether there are 10 of us or 40 participating in the class. At the same time,  the Zoom “spotlight” on my coach, coupled with her occasional personal reinforcement,  makes me feel that I am in an individual training session. It’s a very powerful combination that I am not sure could be duplicated in a face-to-face situation.

 

Almost every day of the week, I have a RSB class or a related activity, and my world has expanded and become immeasurably richer as a result. Although I find that I now devote much more time related to my Parkinson’s status than I ever did in the 9 years preceding, the results are well worth it. I feel stronger and more capable than I have possibly ever in my life, and I am open to any challenge that might present itself. All thanks to RSB and my wonderful coaches. While I of course hope that the pandemic will end sometime in the near future, I also hope that the virtual platform will remain to

allow me to participate regularly within the warm and inclusive community that is a little too far from my home for me to access “live.”

My Rock Steady Boxing world may be virtual, but the joys and benefits are very real!

Emmy Zuckerman, West Windsor, NJ

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