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Archive for the ‘Guest Post’ Category

Money Can’t Buy Me Love…

Thursday, March 1st, 2018

Faced with the end of one of Deen’s Day Trippers larger fundraisers, their team came up with a creative yet simple solution to raising more funds. Doreen’s guidance to her new team members will take them far!
Helaine Isaacs
PUW Event Director

Money can’t buy me love but it can fund research to find a cure for Parkinson’s disease.

This is Deen’s Day Trippers’ 10th year at the Parkinson’s Unity Walk. Our name is a combination of my nickname and my love for the Beatles. For the past several years, we’ve held a number of different fundraisers – a Pasta for Parkinson’s dinner, a restaurant fundraiser, Country for a Cure, and two bar events.

This year, my sister, Robin sold her restaurant in VT, so we are losing the fundraiser that brought in the greatest amount of money. We want to find a new way to make up for the funds we used to raise at Pasta for Parkinson’s. Our friends and family continue to generously support our team each year, but our network of family and friends tend to overlap with one another.

Then we realized the solution was simple – we need to expand our network! My goal is for 10 new Trippers to sign up, 10 additional team members to expand our network, who will invite their friends, family, and coworkers to donate to our team and support our cause. If 10 new members joined us and they each raised a few hundred dollars, we’ll have collectively raised a few thousand dollars. It’s as easy as that.

As we identify each new potential team member, I encourage them to join our team and provide them with guidance, so they can be successful in their fundraising. My suggestions to them include:
* Personalize your donation page. I offer to have my daughter, Jenny, do this for them.
* Share the link. You can post it on Instagram or send it in an email.
* Download the Unity Walk’s mobile and Facebook aps.
* If you don’t feel technologically savvy, you can just tell people about the Walk.
* If they are unable to donate online, invite them to send a check or give you cash or Venmo you! You can take care of mailing in the donations you collect.
* Tell your friends and family our story, how far we’ve come, how motivated and hopeful we are. Tell them how wonderful this event is, that it’s the largest grassroots fundraiser for PD. It’s not just a walk in Central Park – it’s a celebration of optimism and it raises millions of dollars to find a cure for PD.
* Let them know that 100% of all donations are divided among five major Parkinson’s foundations and go directly to research.
* And make sure they know what a profound impact this event has on the millions of people living with PD, like me.

Our goal is to surpass the $100,000 mark as we participate in our team’s 10th Unity Walk and we can’t do that without a little help from my friends.

The Parkinson’s Unity Walk needs you! I need you. Won’t you join us?

Doreen Erasmus
Team Member, Deen’s Day Trippers

Parkinson’s Pride

Tuesday, February 20th, 2018

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

Monday, February 5th, 2018

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.


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

Monday, April 10th, 2017

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!

Thursday, March 30th, 2017

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