In my quest for Parkinson’s Disease (PD) symptom relief and to slow the progression of the disease, I have pursued various forms of exercise, group classes, natural dopamine, meditation, acupuncture, plant based, gluten free, no added sugar diet and prescription medication, all to no avail.
The last time I took a group class (Dance for PD® at Lincoln Center) for PD patients, I left it in tears, seeing how much I have lost to this illness and also seeing in the other participants, my potential future as the disease progresses. The good news is, not everyone experiences the same or all the possible PD symptoms and the disease progresses at different rates in everyone.
This week, I attended my first Rock Steady Boxing for PD class at Epic Martial Arts in Sag Harbor, NY. It did not start out well for me. There were about 10 of us, mostly men, all different ages and we were all at different stages of the disease; some with walkers and canes , others dealing with tremors and some like myself, in the earlier stages of PD with no glaring symptoms.
One of the students (I will call her Mary) walked into the matted exercise area and tripped and did a face plant on the floor. As she laid there crying, (one of the assistants immediately went to her aid), I could feel her helplessness, vulnerability and despair and it vividly brought back the memory of when I fell on my bathroom floor back in July.
Tears welled up in my eyes as I turned to a fellow student next to me and said: “There but for the grace of God go I”. He knowingly and sadly shook his head in agreement. All of the students sitting there could easily empathize with Mary, either having fallen previously or realizing it was probably in their future. It kind of reminded me of what Steve (my life partner who took his own life in 2015) would always say about bike riding: “There are 2 types of cyclists, cyclists who have crashed and cyclists who are going to crash. With PD, it is probably inevitable that at some point, those of us afflicted with this disease will fall if we haven’t already.
Michelle the instructor was a great motivator and in no time, the sad cloud of Mary’s fall dissipated and Michelle had us all engaged in the workout. Mary, with great dignity and grace dusted herself off and joined the rest of us in class.
At one point during the workout, Michelle was coaching us to go faster as we were punching the heavy bags. I thought this was hilarious since “fast” is no longer part of my vocabulary and I couldn’t stop laughing. One of my most visible PD symptoms is slowness of movement. With this disease, it is so critical to maintain one’s sense of humor, something I struggle with on a daily basis. If I don’t laugh at myself, I will crawl up into a ball and waste away.
This class will be good for me. I will not be alone in my struggles and I will form a camaraderie with people who share the same challenges of PD that I have. From what I saw in my first class, all seemed to be determined to fight this cruel and insidious disease of countless losses and not give in to it.
Since my PD is progressing, I am becoming more and more cognizant of the lessons I need to learn from this disease and being in the class with fellow PD sufferers really brought it home for me. The first lesson is to always be mindful and focus on one thing at a time. As an example, no more fumbling in my bag for something while I am walking as this is a sure way for me to lose my balance and fall. The second is to be grateful for the simplest of things I have always taken for granted, as any day, I can wake up and what was previously done without thought , now, can only be performed with great difficulty. These were daily rituals I had never give a second thought to; things like buckling a seat belt, folding sheets, putting a key in a lock; all are such simple, mundane tasks. With PD, they can become monumental, overwhelming and so frustrating. One never knows what or when one will lose the ability to do a routine task; something you never thought twice about in the past.
My sincerest hope is that Rock Steady Boxing will be something that can help slow down the progression of this disease for me. My goal is to write a blog in a few months that can attest to the success of this program for me and that I can be a poster child for Rock Steady Boxing. Stay tuned…