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Archive for the ‘Exercise’ Category

PUW Sends a Shout Out to Team Parkinson!!

Wednesday, May 14th, 2014

DSC00187_crop(May 14, 2014) – Team Parkinson, a strong supporter of the Parkinson’s Unity Walk, raised over $106,000 at the recent ASICS LA Marathon. A portion of these funds is donated to the Unity Walk. PUW is grateful to Team Parkinson for their continued support of the Walk. We wish them every success as they turn their sights to the San Francisco Marathon scheduled for July 27th.

Way to go TP!

Helaine Isaacs
PUW Event Director

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

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

Tuesday, February 25th, 2014

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

The Edmond J. Safra Parkinson’s Wellness Program will provide Tai Chi and Nia Dance demonstrations at the Unity Walk this Saturday

Tuesday, April 23rd, 2013

As we thought about the type of entertainment we wanted to offer at the 2013 Unity Walk, we decided to select programs that highlight what people living with Parkinson’s disease are doing to stay healthy. That is what The Edmond J. Safra Parkinson’s Wellness Program is all about. I had to check it out myself so I spent an afternoon there. I participated in a Nia class, and met Amy Lemen, the Center Coordinator and the Nia and Tai Chai instructors. The workout kept me moving and the energy in the room moved me. We are delighted to have Amy Lemen introduce their program to you in anticipation of Saturday’s Walk.

Helaine Isaacs
PUW Event Director

nia group celebrateIt’s been an exciting time this spring as the NYULMC Parkinson and Movement Disorders Center has prepared for this year’s Unity Walk.  Participants in The Edmond J. Safra Parkinson’s Wellness Program – our community partnership with the JCC in Manhattan – have been abuzz with anticipation and their enthusiasm for the opportunity that the Walk provides has been inspiring.

The Edmond J. Safra Parkinson’s Wellness Program is honored to be featured at this year’s event.  We will be presenting demonstrations of several of our program’s popular fitness classes – Nia: Music and Movement and Tai Chi. We’re proud that many of our Program participants have graciously volunteered to show their strength and their moves with Nia instructor Caroline Kohles and Tai Chi instructor Lewis Paleais on the Bandshell stage immediately following the walk.

Additionally, our Bold Moves Walking Group has been training for the past ten weeks for Saturday’s Walk.  Bold Moves was designed specifically for people with Parkinson’s as a training program to build confidence and endurance in preparation for the Unity Walk.  Bold Moves team members have committed to supporting each other with weekly group walks through Central Park and the streets of the Upper West Side.  The Walking Group is up to 2 miles per walk – Coach and fitness trainer Jody McVey and team coordinator Cheshire Schanker have been with the group every step of the way.

Tai Chi walkingProgram participants will be joined by their biggest fans – staff members from the NYULMC Parkinson and Movement Disorders Center, the Rusk Institute for Rehabilitation Medicine and the JCC in Manhattan. In addition, students from the NYU School of Medicine and the NYU Silver School of Social Work, are looking forward to joining the walkers and supporting the festivities at this year’s event.

Since 2007, the Edmond J. Safra Parkinson’s Wellness Program has focused on dignity, hope and possibility while building a welcoming hub for the Parkinson’s community. Our goal with the program is to help keep those impacted by Parkinson’s active, educated and connected through opportunities to come together in fitness classes, support groups and educational and socialization events.  We’re proud of the work that our patients, caregivers and families do every single day to live well with PD.

Over the years, our program has been inspired by the Unity Walk and all that it does for the Parkinson’s community, as we work toward more options, better treatments and a cure.  We at the NYULMC Parkinson and Movement Disorders Center are grateful to the Unity Walk for what it gives to our patients, caregivers and families – a unique opportunity to come together as a community while working together toward the common goal of raising funds for Parkinson’s research.  It is an exhilarating example of unified grassroots action in an effort towards positive change.

New York City is alive with excitement for the Unity Walk and we’re thrilled to be a part of it.  Our Team will be proudly wearing purple Bold Moves t-shirts – look for us, we’d love to say hello. We look forward to seeing you very soon!

Amy C. Lemen, MA, MSW, LCSW
Center Coordinator and Clinical Neurology Social Worker
Supervisor, The Edmond J. Safra Parkinson’s Wellness Program
NYULMC Parkinson and Movement Disorders Center

Reel Therapy: Irish Set Dance & Parkinson’s Disease

Sunday, March 17th, 2013

Happy St. Paddy’s Day! We think this is the perfect time to share Terrance O’Dwyer’s knowledge of the therapeutic effect of Irish traditional (“Trad” for short) dancing on Parkinson’s disease. One of his goals is to get the word out: Trad “reely” helps!

Helaine Isaacs
PUW Event Director

Reel Therapy: Irish Set Dance & Parkinson’s Disease by Terrance O’Dwyer, Team O’Dwyer
Which is more probable – the chances of winning $50 million in power ball super lotto or, the likelihood of an Irish dancer and Irish composer naming a newly composed Irish jig tune after an Italian neurologist, who just happens to be a member of an Irish traditional music band (Trad for short,) and who has documented the therapeutic effects of Irish set dancing for those of us with Parkinson’s disease (PD)?

Trick question, to be sure, and I am not sure we have an answer. Clearly, the two events are pretty improbable. Nevertheless, two selections from Mary Beth Taylor’s new DVD entitled Sean Nos Jigs for Everyone are named in honor of Italian neurologist, Doctor Daniele Volpe. The story of how this all happened is remarkable.

Dr. Daniele Volpe

Dr. Daniele Volpe

Daniele Volpe is not an ordinary Italian neurologist. In addition to heading up the Parkinson’s Rehabilitation unit at the St. John of God hospital in Venice, he is a musician who loves Trad and who visits Ireland frequently to play in a band.The story began in June of 2010 in Peppers’ Pub, a Trad hot spot located in the tiny village of Feakle (population 126), in County Clare. Pepper’s regularly offers Trad nights where customers can enjoy music, and if so inclined, participate in set dances. One night, just as the band was about to start, the Italian doctor noticed a man with an unsteady but familiar gait enter the pub. “Someone with Parkinson’s,” he remembered thinking.

About 20 minutes later, the band opened the floor for a set dance, and Volpe was surprised to see the man with Parkinson’s among the dancers. What followed was incredible: the man who walked so unsteadily required no assistance to dance. Indeed, the man went through the moves effortlessly, as if he were a different person. Dr. Volpe was quite puzzled, and asked one of the band members about a particular leg movement he noticed. Thus Dr. Volpe learned about the Reel step.

Dr. Volpe made an important observation. For many with Parkinson’s, posterior-anterior advancement of the lower limb during the swing phase of the gait’s cycle is compromised. Yet, the Reel Step enabled a dancer with Parkinson’s to override these impediments.

But why? He surmised the answer may be dance steps associated with the strongly accented upbeat music that characterizes Trad. To test his idea, he ran a small-scale 6-month randomized study involving 24 patients who presented moderate stage Parkinson’s symptoms. While all forms of therapy were beneficial, the Irish set dance group improved more than the control in every measurement category.

Doctor Volpe presented his initial findings in June 2012 to the International Congress of PD and Movement Disorders in Dublin, and, followed his medical summation with the best presentation possible: his patients performed a set of dances before the audience of nearly one thousand.  Talk about pressure!

A report from Ireland prior to conference

A report from Ireland prior to the 2012 International Congress of PD and Movement Disorders in Dublin

One man’s reaction. I first read about the Volpe discoveries in October, 2012 and was overjoyed. I was first diagnosed with PD in 1997. I also love Trad and noticed that when listening to it, I could perform some dexterity tests – such as tapping my thumb with my pointer finger – for significantly longer durations than when without music. Moreover, I found my improvement with dexterity occurred only with Trad, and a few distant relatives, like a Cajun two-step. While I still have not learned to dance, I knew that Doctor Volpe was onto something, and I thought it would be wonderful for someone to name a piece of Trad music after him. The question was, how do I do this?

Enter Martin Tourish, one of Ireland’s leading Trad composers when he is not pursuing his doctoral studies in music at Dublin Institute of Technology. I sent an e-mail to Martin and within a day he wrote back saying that he had just finished composing ten Irish jigs for Mary Beth Taylor’s new DVD entitled, Sean Nos Jigs for Everyone. Eight were not yet titled, and pending Mary Beth’s approval, he would be delighted to name two of the jigs in honor of Doctor Volpe. A day later, he again wrote to say that she enthusiastically agreed.

Next steps. Follow-up testing is now underway with an international randomized trial being conducted by researchers from University of Limerick in Ireland and the University of Melbourne in Australia.

And the tiny village of Feakle will celebrate Doctor Volpe’s discoveries with two major events in August of 2013. As part of the 26th Annual Traditional Music Festival, organizers have invited Dr. Volpe’s dance group of Parkinson’s patients to be special guest performers. And, Doctor Volpe will present his latest findings at a conference on “The Therapeutic Effects of Irish Set Dancing in the treatment of Parkinson’s Disease.”

Finally, for anyone who does not know what set dance is, and for those that love it, here is a video of ‘reel music’ and its effect on happy feet!

Youtube set dancing