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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

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.

 

The Today Show 4.21.17 – Join Us!!!

April 13th, 2017 by Parkinson's Unity Walk Team


(April 13, 2017) – Join the Unity Walk on the plaza of the Today Show on Friday, April 21st! It’s been confirmed that May May Ali, Parkinson’s advocate and PUW supporter, and Carol Walton, CEO of The Parkinson Alliance will both be interviewed on the plaza of the Today Show on Friday morning and all Unity Walkers are invited to show your support by joining us. We’ll be there wearing PUW t-shirts, carrying PUW signs and banners, and making some noise – all to raise awareness of the Unity Walk!

Now that we’ve confirmed May May and Carol’s interview, our group is guaranteed great placement on the plaza. We will meet in front of the main entrance to 30 Rockefeller Plaza between 6:00-6:15am. That’s the building that the Christmas tree is in front of in the winter. Rockefeller Plaza runs between 49th and 50th Streets and is parallel to and in between Fifth and Sixth Avenues. At approximately 6:15am, someone from the Today Show staff will escort us onto the plaza behind the spot where May and Carol’s interview will take place. If you arrive after 6:15am, find a staff person at the front of the line on West 48th Street between 5th and 6th Avenues and tell them you’re with the Parkinson’s Unity Walk. They will arrange for you to meet our group on the plaza. You can also call me on my cell when you arrive and I can call a staff person for you. My cell number is 609-651-9155. If you arrive past 6:30am when they let the general public onto the plaza, we will do our best to hold a spot for you with our group but we can’t guarantee it at that point.

We hope you can join us in person. If you’re watching from home, use our hashtag #puw2017 and let us know you’re with us in spirit.

Helaine Isaacs
PUW Event Director

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