Archive for the ‘20th Walk’ Category

Yoga and Parkinson’s: A Healing Path for Every Side

Tuesday, March 25th, 2014

We are sometimes asked “What is the best exercise for a person living with Parkinson’s disease?” The answer – the exercise you will actually do. For some people, it is yoga. I first met Renee Le Verrier several years ago at a Young Onset Parkinson’s Disease conference  in Providence, RI. I was amazed at how she transformed the room while leading a chair yoga class for people living with Parkinson’s disease. We are grateful to Renee for sharing the impact that yoga has had on her life and her Parkinson’s disease.

Renee Le Verrier, RYT, is a certified yoga teacher and author of Yoga for Movement Disorders:  Rebuilding Strength, Balance and Flexibility for Parkinson’s and Dystonia (book and DVD). She teaches at Massachusetts General Hospital’s Parkinson’s Yoga and Lecture Series, Whittier Rehabilitation Hospital’s stroke rehabilitation program. Renee also collaborates with the MA Chapter APDA and TriYoga Boston in offering a five-day certificate program for yoga teachers who want to learn how to work with students with Parkinson’s. For more information, please visit http://www.limyoga.com/.

Helaine Isaacs
PUW Event Director

DSC_2301I stumbled in to my first yoga class, literally, when I was in my 30s. I didn’t notice the half-step up and I entered the quiet space with an aayee, whoop, and oof. Embarrassed, I tugged my hoodie around my reddening face. Though my left side moved slowly and felt uncoordinated – the result of a childhood stroke – I’d never quite gotten used to the limp, the stumbles.

When I snuck a peek around the room, I discovered that no one seemed bothered by my noisy, clumsy interruption. A peacefulness lingered in the room.

The teacher led us through poses and I felt my body absorb both the movement and the calm around me. Sore muscles softened, my breathing had a rhythm to it. Even a bit of the residual hypertonia and imbalance in my left arm and leg released. I felt taller.

The biggest surprise came as I realized that my mind relaxed, too. All that brain chatter – mental to-do lists, a review of the morning’s appointments in my head, automatic self-correcting (those should’ves and could’ves, as in: should’ve seen that step) – hushed. Even the song lyric that had replayed itself over and over for the past three days was gone. Yoga had led my mind from planning ahead, thinking back, judging myself. It guided me to the only moment that there really is: the one happening now. I felt free.

mod1childMy Parkinson’s diagnosis occurred after a decade of practicing yoga. I’d started to stumble because my right side moved slowly and felt uncoordinated. Thoughts rushed into my brain: What will happen? How will I manage? Can someone please help me open this jar? I was 42 and I was running out of sides.

Parkinson’s provided plenty of opportunities to stumble and to worry about the future and yearn for what was.  Yoga helped ease the physical struggles by making me stronger and more flexible. It also calmed the emotional struggles because it continued to guide me along the path to the center within me.

I decided to spread the good word about yoga for Parkinson’s while I was attending physical therapy sessions early after my diagnosis. In that six-week program, I worked with therapists in the pool, socialized with fellow patients during lunch, attended counseling sessions. There was a bit of almost everything therapeutic. The one thing missing, I commented at one point, was yoga. As engaging as the rehab was, no one session linked body and mind, providing that freeing sense of well-being, of being in the moment.

I still remember the look the OT gave me when I said that. She gazed across the table, raised her eyebrows and with a dramatic blink, tilted her head and stared wide-eyed at me. What she said without saying a word was: What are you going to do about that? Can you think of anyone who knows yoga and knows what it’s like to live inside a movement disorder body? Um, I remember thinking. Me? Within the week, I had registered for teacher training. That was seven years, countless classes, and a published book ago.

When I stumbled into that first yoga class, I stumbled into something bigger than an approach to movement. I discovered that I do have another side. In addition to my left and my right, there is a healing, centering side: my inside.

Renee Le Verrier

Put the FUN in FUNdraiser

Friday, February 21st, 2014

(February 21, 2014) – I am always impressed with the positive energy behind the fundraisers created by our walkers and teams. In addition to the tried and true method of reaching out to friends and family for donations, many of our walkers decide to mobilize their supporters at an event that raises awareness and funds for research. We highlight these events on our Parkinson’s CHAMP in Action page, to acknowledge their efforts and in the hope that one of the ideas will inspire someone else to create a fundraiser of their own. Restaurant “give back” nights, bar crawls, pancake breakfasts, zumbathons, local 5Ks, bowl-a-thons, and fashion shows are just some examples of how Unity Walkers are raising funds for research. The Unity Walk is just over two months away. There’s still time to plan a fundraiser for this year.

Looking for inspiration? Look no further than Debbie Flamini’s Volley for a Cure held last night at the Hartford School in Mount Laurel, NJ to raise funds for Debbie’s team, Debina’s Dream. I had the privilege of attending and experiencing first-hand, the support of the entire school for Debbie and this cause. I could barely find a parking space when I arrived which I took as a good sign about attendance. The spirit hit me the minute I walked in the door and was greeted with a warm welcome by several Hartford School students. Debbie was in the school lobby being interviewed by the local CBS cameraman and the story aired on the 11pm news. There was a carnival before the volleyball games and food was for sale before and after. Everything was donated so there were no expenses. It was the 5th grade vs. the 6th grade staff on the volleyball court. Both teams rocked but the 5th grade staff prevailed. The bleachers were filled and the teams were cheered on by parents, students and staff. The final tally isn’t in yet but so far, over $6,000 has been raised.
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The fundraiser created by Debbie and the Hartford School is just one example of the many amazing efforts put forth by our walkers and represents the best of the Unity Walk – Debbie’s resilience and positive attitude, her determination to fight this disease and work towards a cure, and the support of those who care about her. Never underestimate the power of community. It was palpable at last night’s event.

I wish I could personally attend each and every fundraiser held on behalf of the Unity Walk but most are not in such close proximity to our office. Even without being there, I know that what these fundraisers all have in common is the sense of commitment and community that is created when people gather for this cause in support of a person they care about. To paraphrase the famous line from Kevin Costner’s movie, Field of Dreams, “Build it and they will come.” Create your fundraiser and you’ll be amazed at the outpouring of support you’ll receive.

Once you decide on your fundraiser, let us know the details and we will post the information on our community calendar and with your permission, on our social media sites. Once the event has passed, complete this form and send us photos and we’ll share your experience on our Parkinson’s CHAMP in Action page.

Have questions or need some guidance? We’re only a phone call and email away. We wish you every success with your fundraising!

Helaine Isaacs
PUW Event Director

A Message From Tricia Cole, Team Captain of the 2013 PUW Top Rookie Team

Tuesday, February 18th, 2014

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I discovered the Unity Walk in 2012 when looking for a way to get involved in spreading awareness and fundraising for Parkinson’s research. Immediately I knew it was an event that I would love to participate in and I registered for the first time. I soon found, however, that actually reaching out to my friends, family, and coworkers to explain why this cause means so much to me was personal and harder to articulate than I expected. In 2012, I registered alone and didn’t raise any money. As soon as the event was over, I saw all of the pictures online and promised myself I would take the plunge the following year.

In 2013 I signed up again but this time I created a team. I was determined to tell my friends about the Walk and raise $5,000, which I felt was a lofty goal especially considering I had raised $0 the year before. I started by sending one email to my closest friends and another to my family. I felt very empowered by their responses. Some friends donated, some registered to walk, some did both, and some even started fundraising on their own for my team. Before I knew it, I was using the Team Captain Fundraising Guide, and the Social Media fundraising tools on the Unity Walk site to share our progress with all of my friends on Facebook/Twitter. I even mentioned the Walk at work and a colleague who I had never known was very invested in the cause wanted to participate and sent my team link around to a few of her friends.

A couple of weeks before the Walk when I realized that my family was flying up from Florida, we had over 30 walkers, we had raised almost $15,000… I figured that we should make it official with a team shirt. Key word being we, plural. I was completely humbled and overwhelmed by how many people were not only willing but eager to help, support, and contribute to our team. With all that support, we achieved the distinction of being the top Rookie team and will have the honor of leading off this year’s Walk. Here comes 2014 and our goal is to raise even more this year to support Parkinson’s disease research.

One of the new teams will be the top Rookie team for 2014 and will get to lead off the 2015 Walk. You never know – it might be you! I wish all team captains, especially the new ones, every success with your fundraising efforts.

Tricia Cole
Team Captain, Team Cole

The Difference Between WELLness and Illness is I and WE

Monday, January 13th, 2014

Nancy Mazonson, Director of Parkinson’s Family Support Program at Jewish Family & Children’s Services of Greater Boston shares her experience of working with people living with Parkinson’s disease on a daily basis and participating in the Parkinson’s Unity Walk.
Helaine Isaacs
Event Director

“The difference between Illness and WELLness is I and WE.”
Swami Satchidananda as quoted by Dr. Dean Ornish, TED Conference, 2006 and repeated by Bob Kuhn, Opening Ceremony, 2013 World Parkinson Congress

circle hand holdingI experience the sense of WELLness that can only come from WE – from joining with others – every single day in my role as Director of Parkinson’s Family Support at Jewish Family & Children’s Service of Greater Boston. By offering Parkinson’s Dance, Tremble Clef choral singing, support and education groups for people with Parkinson’s disease (PD), care partners and adult children as well as information and referral help, I have the privilege of making it possible for people with PD and their care partners to share and connect deeply with others. Our focus is on finding better ways to live well with PD while we wait for a cure. I know for sure that although the Parkinson’s journey can be very challenging, the power of community and the focus on the creative arts can be a healing gift. As one of our dancers said, “This is a caring community filled with camaraderie. Sharing dancing and sharing knowledge with others is good for the soul. It’s so much better than going it alone.”

 

Nancy Mazonson at 2013 PUW

On a sunny April day in 2013, the message of WE truly echoed through Central Park. As a first time walker in the 19th Annual Parkinson’s Unity Walk; as the daughter and niece of men who battled Parkinson’s; and as a professional in the PD world; the energy and connection of the day lifted my spirits. The huge crowd that gathered for the Walk wore everything from matching team t-shirts with a beloved grandpa’s hand print to wacky Viking regalia. Some walked confidently, while others walked haltingly and doggedly – and some rolled along with walkers, wheelchairs or strollers. It was a diverse community all focused on a shared effort to raise awareness and funds for PD research. For those few precious hours in New York, the Parkinson’s Unity Walk offered people who care about Parkinson’s the opportunity to experience the sense of WELLness that can only come from WE – from joining with others.

Please join me in April in Central Park. Hope to see you there!

Nancy Mazonson
Director of Parkinson’s Family Support
Jewish Family & Children’s Services of Greater Boston

Mark Your Calendar for the 20th Parkinson’s Unity Walk – April 26, 2014!

Monday, December 2nd, 2013

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Mark your calendars! April 26, 2014 has just been confirmed for the 20th Parkinson’s Unity Walk. The planning for the Walk began months ago, many walkers have already registered, and several fundraisers have already been held.

We know some of you have been waiting to register until the date is announced so WAIT NO MOREregister today and create your team! If you’re coming from out of town, check our website for hotel rooms at reduced rates. Log into “My HQ” and get started with your fundraising. The year-end holidays are a perfect time to reach out to your family and friends.

Please join us in making every step count at the largest grassroots Parkinson’s fundraiser in the country. Our walkers all have some personal connection to the Parkinson’s community and tell us that they experience a sense of empowerment by participating in the Walk and by raising funds for research.  If you’re new to the Parkinson’s community, please join us so you can share that experience first-hand. If you’re a returning walker, we thank you for your continued support and commitment to this cause.

Want to get a better sense of why people participate in the Unity Walk? Our Parkinson’s CHAMPs will give you a glimpse into some of those reasons.

We’ll be sharing more fundraising ideas and Walk details with you in the months to come. Have questions about fundraising or Walk details? Feel free to call our office at 866-789-9255.

Helaine Isaacs
PUW Event Director