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Archive for the ‘Guest Post’ Category

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

Tuesday, February 18th, 2014

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

Creative Ways to Fight Parkinson’s Disease

Tuesday, January 28th, 2014

Winter's soft lightBettina Chavanne has participated in the Unity Walk since 2007 and we enjoy seeing her photos on her blog. We know that photography brings her much pleasure in spite of some of the challenges associated with taking photos if you are living with Parkinson’s disease, and helps her relieve stress. We asked Bettina to share her experience and her photos. Click here if you’d like to see more of Bettina’s photos.
Helaine Isaacs
PUW Event Director

For many years, I imagined Parkinson’s as a thief, sneaking into my house and taking one more precious item every night. Eventually, I came to see the disease in a less sinister light, more as a sloppy roommate than a cat burglar. You remember the friend in college who would wear your clothes without asking?* The one who “borrowed” your favorite necklace and then “forgot” to give it back? That’s what Parkinson’s does – it borrows all the things I love and messes them up a little bit.

My creativity is my stress-reliever. Which is what made my right-side tremor a bitter pill to swallow. How was I supposed to write? Hold a camera? Play the piano? I realized I just had to wait for my time. I had to wait for those moments when Parkinson’s returned my stuff. Even if only for a moment.

ParisLouvre1Photography has proven to be the creative outlet over which I have the most control. The heavier my camera, the steadier my hand. (That’s also a great excuse to buy really big lenses.) I also developed a not-at-all patented maneuver where I swing my camera over my left shoulder and perch it there to stabilize it. In very wiggly moments, I use a tripod and a remote trigger. Looking at the world with an eye toward capturing it in a single image is a strangely calming pursuit. Taking pictures quiets me, quiets my body and my mind. I still love to sit at the piano and play my heart out, but when my forearm muscles get too tired from fighting the tremor and my notes get all muddy, I can still go take pictures.

Landscapes are my favorite to shoot, although architecture and machinery run a close second. No matter how many times you snap a picture of a particular lake or hill, it won’t ever look the same. I love the mutable quality of our natural surroundings. I love the vast and peaceful emptiness of certain landscapes. Abandoned buildings and machinery (bridges, rusted tractors, airplanes) are just as magical for me – all rusted edges and unusual, imperfect shapes. I get lost when I’m taking pictures, which means I get to forget for a while about how I’m feeling physically.

Manassas Air ShowParkinson’s will continue to borrow parts of me without asking permission, but I will continue to keep the best parts for myself.

For those of you fellow Parkinson’s folks interested in pursuing photography as a hobby, a few words of advice: 1. Make sure all of your lenses are fast (f2.8 or f1.4) and coded IS, for “image stabilizing.” 2. Shooting pictures with your iPhone is an exercise in futility. Unless you manage to master the “image burst” function, which lets you fire off dozens of shots at once.  3. Auto-focus is your friend.

*An important caveat to this blog: My college roommate is a delightful woman and a very close friend. And she never borrowed anything without asking (particularly since she and I had such different taste in clothes that she would never have been caught dead in one of my argyle sweaters).

Bettina Chavanne
Team Captain, Team Bettina

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

Aikido makes the difference for Ken Marvin

Wednesday, February 27th, 2013

3rd degreeKen Marvin has participated in the Unity Walk since 2003. In this guest blog post, he shares his experience with Aikido, the martial arts practice that he and his doctor believe has slowed the progression of his Parkinson’s disease. This is another example of what our walkers CAN DO to be proactive in managing this disease. It’s different for each person. Let us know what is working for you.
Helaine Isaacs
PUW Event Director

I was diagnosed with Parkinson’s at age 35. The most important decision I made about treating this disease was made five year before my diagnosis. In 1994, I decided to take a Martial Arts class called Aikido (Nihon Goshin Aikido) with the idea of getting my son(s) into it later. You see, my oldest son at the time was 3 years old and very skinny. I was afraid he was going to get picked on. I wanted him to have self-confidence and be able to defend himself. I did not plan to continue once he got going. Later, I realized I needed Aikido more than I knew.

It was October of 1999. The world was worrying about the year 2000 and its effect on the computer systems (Y2K). I was working for a large company’s Information Systems group in charge of the Y2K project for their Telecom department. It was a typical “bite off more than I could chew” day. I was in my office preparing for a meeting, getting a late start because I had just come from my flying lesson early that morning. I was a bit worn out having stayed up late to work on a project for the MBA program I was enrolled in. This is when I felt a flutter in my left pinky. My pinky was moving on its own. My assistant at work said “Maybe you have that thing Michael J. Fox has.” I just laughed. I thought it was a pinched nerve or something. See, I was also in the process of testing for a black belt in Aikido.

Less than five months later, at the ripe old age of 35, I was diagnosed with Parkinson’s disease (PD). I remember looking at my wife and we both looked at the doctor and said, “So, what do we do?  What medicines, etc.?” There was no shock; no “why me?” moment. I think we both already knew. I was trained in Aikido to blend with whatever comes your way. This was no different. Over the next two years, I focused on what was important in my life. I stopped the MBA program because I was in it for the wrong reasons. I had to put down flying lessons due to medications. I eventually went out on disability from work to relieve the stress. I also realized how much the training and teaching in Aikido was helping me physically and mentally.  My neurologist, Dr. DiRocco, and I believe that my Aikido training has a lot to do with my continued health and slow PD progression.

Fast forward – I am now 48 with a wonderful wife and four boys ages 13-21. In the 13 years since my diagnosis, I’ve continued as a student and instructor in the art of Aikido and recently obtained my 3rd Degree Black Belt in our 5 Degree system. I teach classes every day but Sunday. Other than tremors and soft speech, I do not have many of the issues you would expect after 13+ years with Parkinson’s disease. Balance has never been an issue. No rigidity. Even the tremors stop when I do a technique in Aikido. Click on the image below to view the youtube video I created about Aikido and its impact on my Parkinson’s disease.

Youtube imageAikido is all about balance and being one with your environment. Continually moving from your center of gravity, keeps your body balanced. The discipline keeps the mind in balance. The exercise in general is good for the body. We even do stretches designed to keep your wrists flexible. This art is exactly what I need to keep me healthy.  Aikido found me before Parkinson’s set in. I believe it was by the grace of God.

Ken Marvin
Team Captain, Miracle Marvins