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

March 25th, 2014 by Guest Blogger

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

 

Advocacy through PDF’s Parkinson’s Advocates in Research Program

March 11th, 2014 by Guest Blogger

Karen Smith PUW for blogReceiving a diagnosis of Parkinson’s disease was not what I was expecting when at the age of 42, I sat in the office of a neurologist. That day, I took the first step on a long unknown journey. My life was not over but life as I knew it was. For the first few years, I only shared the diagnosis with close friends and family. I didn’t want to be perceived as handicapped or “less than” in anyone eyes. I didn’t want sympathy so I erected walls around the Parkinson’s piece of me. If I didn’t take PD out of those walls, I didn’t have to examine it or contemplate what effect the disease would have.

Over the course of the last thirteen years, I’ve experienced many physical and cognitive changes. Muscles refuse to cooperate and my body’s movements grow difficult. My view of myself has changed also.  I don’t want to become my illness. I tell myself every day “You are still you.”

I’ve had to redefine my life and what brings meaning to it. I made up my mind to live the best life possible with Parkinson’s disease. I determined that a part of that life would include advocacy. I not only want a better future for myself but for all those living with Parkinson’s disease. I start with hope and fuel that hope with action.

Living in a mid-sized Midwestern town made my advocacy efforts somewhat difficult. My city did not have movement disorder specialists, research clinics or any conferences or symposiums. Then I heard about a program offered through the Parkinson’s Disease Foundation (PDF). The program is called Parkinson’s Advocates in Research or PAIR. The PAIR program works through patients to bring about better treatments at a faster pace. This is accomplished by ensuring that people with Parkinson’s and care partners are primary partners in research alongside scientists, industry and government. They are bringing together the people who live with Parkinson’s and the people who are developing new treatments.

Through in-person trainings and an online course, the PAIR program provides people touched by Parkinson’s with the knowledge and skills needed to pair up with scientists and healthcare professionals. By collaborating with research institutions, the PAIR program facilitates partnerships between Research Advocates and professionals at the frontlines of research.

The support PDF provides doesn’t end with the training. PDF staff works closely with advocates to identify advocacy opportunities, participate in ongoing education (webinars, conference calls), share resources, and network. Only people with Parkinson’s and care partners know what it’s like to live with Parkinson’s disease. It’s important that researchers hear what they have to say. For example, PDF Research Advocates can raise issues that are all too often overlooked, and help to identify and solve barriers to Parkinson’s research. Most importantly, the presence of Research Advocates reminds scientists of the urgency to find new treatments and a cure for Parkinson’s as soon as possible. With the training I received through PDF I was ready to begin my role as a research advocate.

To learn more about the PAIR program, visit the PDF website http://www.pdf.org/pair. With hope and action we CAN all make a difference!

Karen Smith
Team Member, PDF Pacers

Beating Parkinson’s Disease One Step at a Time from Walking the Dog to the NYC Marathon

February 25th, 2014 by Guest Blogger

I first met John Ryan on the plaza of the Today Show the morning before the Unity Walk in 2011. He joined our group along with his daughter and brother to help promote the Walk. John has not stopped raising awareness and funds for Parkinson’s research since then and more recently, he hasn’t stopped running. Each person’s path along their Parkinson’s journey is different. John has found the one that is working for him.
Helaine Isaacs
PUW Event Director

JR CelebratesI was diagnosed with Young Onset Parkinson’s disease in the spring of 2010 after noticing symptoms that affected my motor skills on the right side of my body. It took some time to digest this news. After about six months, I took my first steps to taking back control of my life from this disease. I participated in the 2011 Parkinson’s Unity Walk to meet others in the Parkinson’s community, as well as try to get more information about treatments and research. It was at the Team Parkinson booth that I met John and Edna Ball. I told them I had been recently diagnosed and they asked me “What exercise are you currently doing?” My reply – “I walk the dog twice a day.” To which, they smiled and shook their heads. “If you are going to stay healthy and control this disease, you need to do vigorous exercise and sweat a lot!” I took that advice to heart and began jogging short distances the next weekend and have not slowed down since.

I was never an athletic individual but not really out of shape. As I began running, I realized that my body, which had become so stiff with muscle rigidity, was actually becoming loose again and my tremors were reduced. Running was becoming the best medicine for what ailed me! So I figured the longer I run, the better I would feel. I entered my first 5K (3.1 miles) race that summer and although it wasn’t the prettiest run……. I finished!!!  And I enjoyed it! I continued to run in local 5K races in my community and joined Team Fox, the fundraising arm of The Michael J. Fox Foundation for Parkinson’s Research.

Team Fox Rocks 5Team Fox and my friends in the Parkinson’s community have inspired me to push harder and go farther. In 2012 and 2013, I was inspired enough to register for the New York City Half Marathon (13.2 miles). For me, this was the epitome of my journey! I had gone the distance twice, raised thousands of dollars for research, and had created awareness for Parkinson’s  disease through various media and social media outlets. I had accomplished what I had wanted to do with this activity. That was until my running partner asked me the inevitable question, “Why stop here???  Go for the marathon!!!”  At that point, the challenge was issued on a feat that I never thought was possible, for I was not a runner. But now I realize that I AM a runner and a fighter!!!
John Ryan photo no MJFF logo
I began training for the 2013 NYC Marathon (26.2 miles) this past May (six months prior to the race). The support I received from fellow runners and the PD community over that six month period was overwhelming and heartfelt. I decided to run the entire race together with a group of friends that we called “The Team Fox 5.” We made a pact – we start this race together and we finish this race together; we do this as a team to finish Parkinson’s disease. It was truly an amazing day that I will cherish for my entire life. The funny thing I realized when I finished was that it was more emotionally draining for me than physically draining. The love and support I received from friends, family, and the cheering people of NYC along the marathon route inspired me to carry on to the finish.

Michael J. Fox has a quote that I say as I begin each day, “We only can’t, if we don’t.”  Go out there and be an active participant in your life!!! Running a marathon is not for everybody but if there is something you have always wanted to accomplish – go out there and do it. Do not let the beast known as Parkinson’s guide your destiny in life. Go out there and be active – active in your physical and mental activity and active for the Parkinson’s community.  We can change the course of this disease for the millions if we all put some skin in the game. Become an active agent for change by getting involved in one way or another.

John Ryan
Team Captain, Team Ryan’s Hope

Put the FUN in FUNdraiser

February 21st, 2014 by Helaine I., Event Director

(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.
photo 2photo 3

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

February 18th, 2014 by Guest Blogger

TeamColeBannerWebwithdate

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