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Parkinson’s Pride

February 20th, 2018 by Guest Blogger

Last April, I received an email from one of our walkers, Carl Kane, that he sent to his supporters right after the Walk. Each person’s experience at the Walk is as unique as the progression of their Parkinson’s disease but Carl’s note captured his personal sense of gratitude and pride that he experienced on Walk day. We think it is well worth sharing with our participants.

Helaine Isaacs
PUW Event Director

These days not many of us use the Yiddish word “kvell.”  Loosely translated, it means a deep sense of pride. For me, the PUW experience evoked that deep sense of pride on many levels, some leading to unabashed bouts of tears.

I “kvelled” over my son, Alex, now a proud papa himself, as he organized and motivated us, culminating in over $21,000 of donations.  I “kvelled” over my family, their unbridled love, commitment and support for me.

Walking through Central Park that gloomy morning, I ”kvelled” over my family and friends, surrounding me in a sea of love and orange headbands, lighting up the misty sky.  I broke down as I read a poster proudly upheld by a family I did not know, “Papa we miss you. He died two years ago from Parkinson’s.”

I thank you all, my family and friends, for your participation and generosity.

Carl Kane,
Team Member, Team Big Daddy Kane

 

Calling All Players for Ping Pong for Parkinson’s Championship

February 5th, 2018 by Guest Blogger

Update – We are excited to announce that Margie Alley, Team Captain of Margie’s Movement is the winner of the 2018 Ping Pong Parkinson’s Table Tennis Championship! Click here for coverage on News 12.

 

We are excited to host this guest post by Bruce Ballard as he shares his experience attending Ping Pong for Parkinson’s in Pleasantville, NY. Bruce hosts a website parkingsuns.com and is an official blogger for the World Parkinson Congress. Our thanks to Margie Alley, Team Captain of Margie’s Movement for the Unity Walk, for making us aware of this new program to benefit the Parkinson’s community!

 

I first learned about Ping Pong Parkinson’s Night at the Westchester Table Tennis Center in Pleasantville, NY when it was featured on Channel 12 last March. I decided to check it out because it is nearby to my home.

Since then I’ve been attending their weekly Parkinson’s Ping-Pong night. They provide a wonderful service. Typically, there are approximately 6 – 10 players and six volunteer coaches who participate each Wednesday from 7:30 pm – 8:30 pm. If you are in the area, we hope you will join us – on Wednesday nights and for the 2018 Winter Championship for Players with Parkinson’s on Saturday, February 17th from Noon to 6 pm.

The program’s mission is to help individuals with Parkinson’s slow the progression of the disease by playing ping-pong regularly. Ping-pong involves hand-eye coordination and quick decision making. You’re also moving your body around a lot, twisting and turning your torso, and carefully trying to control how you strike the ball.

Each night begins with stretching exercises. We stand in a big circle and rotate our heads, stretch our necks from side to side and front to back, and do related exercises with our arms and shoulders. Then two of the instructors demonstrate some basic techniques for beginners. For example, did you know that you don’t want to hit the ball head on, but instead hit it on an angle from below or above, getting it to spin in the air as it flies back over the net? It’s not like whacking a baseball!

Then it’s time to play! We have six tables set up with the volunteer coaches on one side and the players on the other side of them. After the first 10 minutes of play, the players rotate to the left, so they get the chance to play with each volunteer coach for approximately 10 minutes each session.

There’s a dual focus: have fun and improve your technique. You get immediate feedback from the instructor about how to hold the racket better, how to swing your arm better, how to generate spin on the ball. At the end of the evening, everyone gets videotaped so they can see how they improve over the weeks.

There’s still time to sign up for the 2018 Winter Championship for Players with Parkinson’s! Visit our website to find out more about our weekly sessions and the Championship.

 

A Thanksgiving Recipe for an Energized Unity Walk Team

November 20th, 2017 by Helaine Isaacs, Event Director

A Thanksgiving Recipe for an Energized Unity Walk Team

Ingredients:
A loving family
Creativity
Positive energy
Parkinson’s Unity Walk
Humor
Devoted friends
Caring colleagues
Social media

Mix first three ingredients together with the Parkinson’s Unity Walk around your holiday table this Thanksgiving and see what ideas are cooked up. We’ve heard countless stories of PUW teams and fundraisers that are created in this way. If you’re new to the Walk, what better time to come up with your team name? The fifth ingredient – humor – may inspire you! If you’re returning, use the time to come up with new fundraisers and ways to expand your team. Combine this mixture with the next three ingredients – devoted friends, caring colleagues, and social media – and see your team grow exponentially.

Thanksgiving is a time of gratitude and connection to one another. No gifts are exchanged; there are no distractions. Participating in the Unity Walk is a wonderful way to express gratitude and show support of someone in your life who is impacted by Parkinson’s disease. If you’re living with Parkinson’s disease, it’s an opportunity to express your gratitude to those who support you in so many different ways throughout the year. The Parkinson’s Unity Walk is the vehicle that brings it all together.

I am grateful for the opportunity to support such an incredible group of people. The walkers and teams I meet in my role as Event Director enrich my life and inspire me. At my family’s Thanksgiving table, we all take turns discussing what we are thankful for. Being a part of  the Unity Walk is always on my list.

The Unity Walk is grateful to all our walkers and donors – those who are new and those who support the Walk year after year; large teams and small; those who walk in honor of someone or in their memory; and those who are living with Parkinson’s disease as well as their family and friends.

We wish you a relaxing and delicious holiday enjoyed with family and friends.

With gratitude,
Helaine Isaacs
Event Director

PS – For those of you who “celebrate” Black Friday, we wish you every success with your purchases!

Multiple Approaches to Treating Parkinson’s Disease – Movement Disorders Specialist Becomes a Rock Steady Boxing Trainer

April 10th, 2017 by Guest Blogger

Rock Steady Boxing has caught on like wildfire and you’ll have plenty of opportunity to learn about it (along with various other forms of exercise) at this year’s Parkinson’s Unity Walk. They will have representatives at the new Movement and Exercise booth on Margot Zobel Way, along with representatives from Dance for PD and Delay the Disease. In addition, two different affiliates – RSB Central Jersey and RSB Randolph, NJ YMCA – will be performing demonstrations on the Bandshell stage. When we found out Dr. Adena Leder, a movement disorders specialist on Long Island, became trained as a RSB instructor, we asked her to share her experience. We hope you stop by the Movement and Exercise booth to find out where this is a class in your local community and enjoy the RSB demonstrations at the Walk.

Helaine Isaacs
PUW Event Director


It was during my movement disorder fellowship that I first learned about the importance of exercise in Parkinson’s disease (PD). It was always clinically obvious when a patient had stopped physical therapy, or was actively involved.

Several years ago, a patient first told me about Rock Steady Boxing (RSB). Like many people’s first thought, I asked “doesn’t boxing cause Parkinson’s disease?” More and more patients began to buzz about “this boxing class for Parkinson’s.”  When Leslie Stahl presented it on CBS I knew it would be an asset to the New York Institute of Technology (NYIT) Parkinson’s disease treatment center.

It had been at least 10 years since I started treating PD patients and I was growing frustrated with the limitations of the medications. There were many young patients who had been using levodopa for more than a decade and others who were unresponsive to levodopa altogether. I wanted to add another tool to my proverbial toolbox.

With NYIT’s support, I (along with two physical therapists and an occupational therapist from the Adele Smither’s Parkinson’s Disease Center) went to Indianapolis for Rock Steady Boxing training camp.  I was confident that this would be a great opportunity for me to motivate my patients to exercise.  Interestingly, prior to this experience I had never donned boxing gloves, much less boxed.

A large part of the training for RSB was learning about the features of Parkinson’s disease. For myself and my NYIT colleagues, this was the easy part. Each facet of PD is addressed in the class. For example: voice is an issue, therefore during the introduction each boxer must introduce themselves with a loud voice. Cognitive cards are used for multitasking during the fine motor station of the circuit. Gait and balance are addressed during the obstacle course station and social interaction occurs throughout each class.

In Indianapolis, many of the trainees either worked as personal trainers or had MMA (mixed martial arts) experience. Learning how to properly put on wraps and learning how to box was like learning a new language. What impressed me most about the program, was not how physically challenging it was (which it was), but how much interpersonal relationships were being formed. All of the circuits involved teaming up in some way and interacting with others. Additionally, the patients are referred to as “boxers” rather than patients. Aides or spouses that assist are referred to as “cornermen.” All of these are intended to boost morale.

Since September, I have been co-coaching 4 classes per week. I have been impressed with the level of camaraderie that has developed amongst the boxers. It is gratifying to see improvement in the patients, especially ones that were unsuccessful previously using other modalities. Finally, I have something to offer my patients that I did not previously have. Generally, after they come once, they’re hooked because it is an enjoyable and engaging form of exercise.

A large part of the success of the NYIT program is due to the medical student and physical therapy student volunteers. Not only do they help run the class, but they help to motivate the boxers and often act as “cornermen” as needed. For the students, it is a terrific opportunity because they are able to interact with large numbers of Parkinson’s patients and observe how the disease presents differently in different patients. It is also inspiring to see how hard the patients are working in order to improve their quality of life.

Adena Leder DO, Neurologist
Rock Steady Boxing NYIT Long Island
Assistant Professor, Department of Osteopathic Manipulative Medicine
New York Institute of Technology College of Osteopathic Medicine

Sing for Your Health!

March 30th, 2017 by Guest Blogger

Audrey Berger (L) and Dana Calitri (R)

Fear and freedom were my two biggest reactions when first diagnosed with early onset Parkinson’s disease in 2008. Fear, because I didn’t know where it would leave me, and freedom because I felt a surge of life run through my body not knowing how much “good time” I would have left.

After my initial shock, I read only what I thought was essential and went on a quest to find the best doctor for me; one who would allow me to own my disease while at the same time assuring me I had a partner I could rely on besides my husband. I looked for a doctor who would worry for me, so that I could concentrate on having a good life.

Parkinson’s humbled me and left me with the job of recreating myself. There was a book I had always wanted to write. Not caring how fast I typed or that sometimes I used only one finger, I began to write. Likewise, loving music, I began to sing. Luckily my husband likes my voice, and I found myself becoming happier than I had been in a long time.

I filled my days with writing and my evenings with music. Then one night I was on YouTube and I discovered karaoke. I began singing songs from Etta James to Amy Winehouse, jazz standards, to Old Bayou. Finally, I worked up the nerve to go to a Karaoke club. I got a standing ovation!  When we got home that evening, the only thing I could do was smile and thank my Parkinson’s disease for opening my eyes.

I began to notice my Parkinson’s seemed to be progressing slowly. I didn’t know if it had anything to do with my singing or if I was just lucky, but just in case, I added vocal and breathing exercises to my daily Physical Therapy regime. My speaking voice got stronger, and no one could call me depressed. Having lost a few notes in my upper register, curiously I went to see a speech therapist. The doctor confirmed what my neurologist and I had suspected. My lungs had remained stronger than the average Parkinson’s patient and he attributed much of that to the vocal breathing exercises I had been doing. My annunciation began to improve from the mio mio’s and la la la’s I sang daily.  I found myself becoming less self-conscious speaking in crowds. I began to think, if singing can do this for me, it had to be able to help others as well. So, I called my friend Dana Calitri, a multi-platinum singer/songwriter who is also a vocal instructor and has spent years studying sound healing. Immediately we both felt a calling.

Sing For Your Health!, the workshop we put together incorporates information on the latest studies involving music and the brain; deep meditative breathing and vocal exercises all tied back to Parkinson’s and the symptoms they can help. We end with 45 minutes of singing accompanied by live studio musicians and celebrate and have fun; tremors, walkers, and all. And it is my belief everyone leaves feeling better than when they arrived. I know we do!

We created Sing for Your Health! Which now meets on a monthly basis. Our next workshop series begins on Saturday, April 1st, 2pm at The Tournesol Wellness Center, 26 East 36th Street, NYC.  For more information visit http://www.sfyhealth.com/ or email us at sfyhealth@gmail.com.

Sing For Your Health! would like to thank Dr. Claire Henchcliffe and Natalie Hellmers at Weill Cornell Medical Center for all of their support. The workshops are at no cost to participants thanks to the generous support of US WorldMeds.

Audrey Berger
Team Captain, Sing for Your Health