So *FINALLY* our community’s disease awareness month is here.  This April, our team invites you to attend the 19th Parkinson’s Unity Walk on Saturday, April 27 in New York City’s Central Park. If you are looking for a place to unite with fellow advocates, teams, families, friends, and caregivers, come join us.

Our Executive Director, Carol Walton, describes our annual event as “… so much more than just a Walk for a cure.  It is a time to be with the rest of the community and learn more about how you can improve your quality of life while living with Parkinson’s.”

As a participant, you will have the opportunity to learn more about managing Parkinson’s. Spend time at the booths of major Parkinson’s organizations, Ask the Health Care Experts which will have a Movement Disorders Specialist and members of a multi-disciplinary team, and sponsors’ booths. You will have the chance to participate in activities designed to inspire and encourage our Parkinson’s community.  There will be activities for the whole family, including the Kids’ Zone.

The generosity of our sponsors allows the Parkinson’s Unity Walk to donate one hundred percent of donations to research.  Since our inception in 1994, more than $12 million in research grants have been awarded.  All donations are shared among: American Parkinson Disease Association, National Parkinson Foundation, Parkinson’s Action Network, Parkinson’s Disease Foundation, The Michael J. Fox Foundation for Parkinson’s Research, The Parkinson Alliance, and The Parkinson’s Institute and Clinical Center.

The Parkinson’s Unity Walk will take place at the Naumburg Bandshell on 72nd Street.  Registration will open at 8:30 a.m., Kick-Off will begin at 9:45 a.m., and at 10 a.m. thousands of walkers will participate in a 1.4-mile, wheelchair-accessible stroll in Central Park.  Additional event information can be found here.

If you want to participate from home, you can take action and fundraise from your hometown!  Getting started is as easy as registering online.  You can also join and follow the online conversation about #puw2013.

So please make every step count with us this April and sign up to join us.

Today, we have to stop everything else to taste an assortment of snacks for the Refreshments booth. Wish you were all here with us to help with the tasting.

We’re thinking of everyone observing many Holidays and spring break these next few weeks. For our team, these are all signs that the Walk is really approaching.

Smiling because of these snacks and because we’ll see you all very soon =). (Less than) One month to go!!

We look forward to working with you and your teams during this last month before the 19th Parkinson’s Walk – #puw2013 has now officially reached the home stretch!

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

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 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!

Guess which show we are raising awareness … in tomorrow!?!

Set your DVRs to record The Doctors show on Monday, March 18th.
This date is based on if all goes as scheduled; we urge you to please always check your local listings and episode guides.

Sneak peak into topics that will be discussed:  DBS/Deep Brain Stimulation for Parkinson’s.  CLR01.  May May Ali will be on to raise awareness about Parkinson’s and #puw2013!

Ken 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.

Aikido 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