Sharing Strength Through Music

Members of the Tremble Clefs choral group would agree that Parkinson’s has brought them unexpected gifts amid the many losses. For one, it has brought them together.

Each week, thirty or so people, both those with PD and their care partners, gather at the United Parish of Auburndale in Newton, and sing. The Tremble Clefs singing group is part of the Parkinson’s Family Support Program of Jewish Family & Children’s Service of Boston.

Conductor Marilyn Okonow’s energy is contagious as she challenges the group with a repertoire spanning 1940’s jazz to modern pop. Some singers came to Tremble Clefs with a strong music background, but others never sang before or left music behind years ago when career and family duties got in the way. Now singing is an integral part of their week.

For Tremble Clefs member Greg Rice, music has become a sustaining element of his life. He’d never planned to be a composer, but nor did he expect to be diagnosed with Parkinson’s disease in his mid 40’s. Ten years after being diagnosed, after retiring from a high-level corporate career, Greg began tinkering on the piano. And although he hadn’t had lessons since he was a kid, he suddenly found himself composing – chorales, waltzes, even a symphony. Greg says that music could express transcendence, and defiance – “a determination that we’re not going to let Parkinson’s beat us.” The gift of music has helped him to endure the losses of Parkinson’s.

Music not only inspires Greg and his fellow singers, but it gives them a way to support and inspire others. As one singer puts it, “Music is a way to connect to others and to the world.”

This past year, Greg’s composing and his singing with the Tremble Clefs came together in two public performances, one with the Boston Civic Symphony, and the second with the Wellesley Symphony Orchestra. The song performed was “It’s Up to Us – Keep Boston Strong,” which Greg wrote in the aftermath of the Boston Marathon bombing. The song recognizes the heroism of first responders and bystanders who were unexpectedly confronted with the task of saving lives, and encourages all of us to join together to keep our community strong and healthy. As the Tremble Clefs sang Greg’s lyrics in these two concerts, they were living examples of resilience and the value of supporting one another.

Key to this type of resilience is a sense that one is not alone. The outpouring of support for survivors of the marathon bombing has been a vital aspect of healing for both individuals and the Greater Boston Community. Similarly, members of the Tremble Clefs speak of the sense of mutual support that they gain from the group as an important factor in their ability to live well with Parkinson’s. When asked what motivates them to come sing each week, in rain, snow and shine, singers speak both of community as well as creative self-expression. In Greg’s words, “together we’ll be strong and free.”

For information about the Tremble Clefs, Parkinson’s Dance, support, education and networking groups for people with PD and care partners, or other Parkinson’s resources, please contact Nancy Mazonson, Director of the Parkinson’s Family Support Program at JF&CS, at nmazonson@jfcsboston.org 781-693-5069.

For information about Greg’s music and his work on behalf of those with Parkinson’s, please visit www.gregricefoundation.org.

Yoga Teacher Training

Cathi Thomas

It was a pleasure to work once again with Renee Le Verrier of LimYoga and Beth Gold-Bernstein of TriYoga Boston in this year’s Yoga Teacher Training. Twenty-three yoga teachers participated in one, two, and five day programs. I would like to share a letter from one of the participants.

My mom was diagnosed with Parkinson’s more than a decade ago. At first, I was in denial and my fear of what this disease would look like in the future prevented me from actively learning about the disease. As time passed however, and my Mom’s symptoms became more pronounced, I read more and attended some lectures at area hospitals. Though I knew it was necessary, I never enjoyed them; the information was scary and hard to digest.

To my delight and surprise, the information I received at this training didn’t make me feel scared. It was well-organized and presented in a positive, even hopeful way. For the first time, I enjoyed learning about Parkinson’s. My goal at the start of the program was to learn how to safely teach yoga to people with PD and I left eager to become part of the PD community. The focus on community was the common thread each speaker kept going back to and this was very encouraging.

This program struck a perfect balance between looking at PD from a yoga standpoint and from a medical one. The perspectives certainly overlap but too much in either direction could have left me and the other participants feeling unprepared for teaching in the real world. I liked that each day began with a practice suitable for people with mobility disorders so that we got a taste of what we would be responsible for creating by the end.

Day One’s presenters, Cathi Thomas and Tami Rork DeAngelis, gave clear overviews of the epidemiology, medication, symptoms, benefits of exercise and safety precautions. They both answered questions knowledgably and thoughtfully. Clearly, they love their work and it was inspiring to know they welcomed us, as yoga teachers, on to the health care teams of their patients.

Renee Le Verrier is simply a force! The list of positive things to say about her is too long for this review. She showed us how to take the medical knowledge with us in planning our classes. More than safety, she taught us that every pose we choose to teach should be beneficial; we were trained to consider symptoms from rigidity and facial masking to insomnia and constipation when planning our classes. By Day Five, sequencing flowed easily because we had plenty of material to work with as well as the tools to adapt other poses to suit the needs of our students. We valued her feedback, as well as that of a fellow student living with PD on how certain poses felt or affected their dystonia or tremor. Having a teacher and fellow student with PD in our class gave us a window into living life “on and off” medication which we simply couldn’t have grasped in a book. I was so glad the course allowed for conversation on this.

Brahmi (Beth) Gold-Bernstein consistently drove home why yoga is more than just exercise because of the breathing techniques and meditation it incorporates. Lorrie Jacobsohn brought an RN’s view of the physiological side to meditation which tied in nicely to our understanding of what goes on in the brain of someone living with Parkinson’s. Finally, the panel of guests who came to talk about exercise with PD rounded out the course.

I have to admit that I left each evening with a tired body (chair yoga is not gentle!) and lots of information to absorb so I am thankful for the closing circles that ended each day – they were so grounding! It was details like this that sent the course above and beyond my expectations and left me feeling inspired.

Until There’s a Cure, There Needs To Be a Community

Cindy Bittker, MSW
Co-Founder of the Young Onset Baby Boomer Support Group
MA State Representative, Parkinson’s Action Network (PAN)
 

Until there’s a cure, we need a community of services, support and socialization. Not a virtual community. A real community.

Especially as we hit mid-stage PD (multiple symptoms, multiple meds, multiple drug interactions, multiple side effects, multiple medications/treatments for other conditions, multiple doctors), we pull back from what had been our communities of association as we can no longer reliably do what had previous been meaningful, productive, rewarding work in our careers, homes, within our families and within our communities.

Our movements become restrictive, physically. Cycles of medication, abilities to drive, mid-stage apathy, fatigue and bodily dysfunction restrict us socially. We have difficulty getting out and about. We become  socially  isolated. Isolation fosters depression. Depression restricts movement. Restricted movement decreases our confidence going out and about. The stage is set for a viscous cycle of decline. Quality of life diminishes for all.

When we are least able to move beyond our areas of geographical and physical confinements, is when we are in greatest need of going the distance, in miles, despite restrictions of movement, mind and mood. To do what we need to do to maintain our health and quality of life, most of us are driving or being driven hundreds of miles a week, to attend PD exercise class, the gym, support groups, doctor visits, physical therapists, speech, occupational and massage therapists, to participate in clinical trials, attend PD education programs, all of which are scattered geographically north, east, west and south.

What people living with Parkinson’s disease need NOW is community. We need a place for our local community to come together, regularly and repeatedly, to build muscles and minds, to share our journey on a daily basis with others going through what we are living through. We need a safe gym with fitness instructors trained in PD. We need a place we can go to every day without an appointment, work out, get therapy, take classes, form interest groups, and develop real communities of support with real, live, local people.

We need places to bring together the entire regional Parkinson’s disease community  together under one roof. We can meet this essential need today.  No scientific discoveries needed. We just need a general contractor, 10,000 SF of commercial space, a convenient location,  plenty of parking and money.

We need to take care of people with Parkinson’s disease now, so we can assure every person touched by this devastating, incurable and progressive disease that until there’s a cure, there’s a community.

Working with Parkinson’s

Bill Jenczyk

By way of introduction, I am a 49-year-old man who was diagnosed with Parkinson’s disease (“PD”) two years ago.  Those of us who are diagnosed at a relatively young age are faced with a significant question; how do we handle our condition in a work environment?  Should I let people know about it?  Should I try to hide it?  Even if people in my workplace know I have Parkinson’s, should I hide it from those outside my workplace?  In some cases disclosure may lead to a difficult work environment, in other cases lack of disclosure may cause additional stress as the person with Parkinson’s (“PWP”) struggles to hide their condition.

I will not be writing from a legal perspective; I am not a lawyer, and I will not pretend to know the legal issues surrounding PD in the workplace.  Instead, I will write about my decisions and experience in the hope that others will benefit from seeing the results.  I have chosen to be open about my condition in my workplace, and I will soon be stepping out into a broader group with an acknowledgment of my condition.  This is my choice, and for many it would be the wrong choice.  In the long run it may prove to be the wrong choice for me as well, but for now it has given me peace.  This chronicle is intended to highlight the actual results that I see as I am transparent about my condition.

My decision to be open came about in large part because I feel less stress knowing that people know what I am dealing with.  As those of us who are familiar with PD know, stress can bring on our symptoms in a major way.  In disclosing, I have reduced my stress and eased my symptoms.  The questions I hope to address include:

  • How do people respond to my PD in a professional environment?
  • What is appropriate disclosure?  Clearly there is a time and place for everything.  I don’t plan on walking up to people I am meeting and saying “Hi, my name is Bill, and I have Parkinson’s disease!”  That would clearly be inappropriate, unprofessional, and selfish.  When is it appropriate to say something, and how should you do so?
  • How do you handle your medication?  As those of us with PD know, your timetable is very important.  Taking a dose a half hour or an hour late can lead to discomfort, symptomatic response, and cascading difficulties.  What do you do if you are in a meeting? 
  • What other workplace issues arise?  What have others with PD experienced?

I am interested in finding out about what others have done, and how that has worked for them.  To the extent possible in a blog format, I’d like to document the issues that both I and others face in the workplace.  The goal of this blog will be to maximize the ability of PWP to successfully work, support themselves and their families, and to contribute to society.  I welcome any suggestions and comments that help to accomplish these goals.

As someone who is still in the workplace, I want to be sensitive to those I work with.  Because of this I will be more general than some may like, but it is important to recognize that this chronicle is about my journey in the workplace while dealing with PD.  I have no desire to hurt or embarrass anyone I come in contact with.  I can say that my workplace has been nothing less than fantastic since my diagnosis and disclosure; but as I write in the future I will obscure whether I am writing about my own experience or the experiences that others share with me.  It is one thing for me to be transparent with my own condition, it is another entirely to betray the trust of those I work with.  The only way I will be public with specific incidents in my own walk with PD will be if I have explicit permission to do so from those involved in the story. 

This post is the first in an ongoing series considering Parkinson’s in the workplace.

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