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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

Young Onset Support Group of Westchester/Bronx

March 8th, 2017 by Parkinson's Unity Walk Team

Teams are at the core of the Parkinson’s Unity Walk and they come in many sizes with various affiliations – family teams, corporate teams, and support group teams. Young Onset Support Group of Westchester/Bronx is a great example of a support group that meets all year round AND participates together in PUW. This is their 12th year at the Unity Walk!

Helaine Isaacs
PUW Event Director

YOPD Support Group of Westchester/Bronx with May May Ali at 2016 PUW

In March 2004, George and Norma Jensen, both of whom have Parkinson’s disease, recognized the need for a support group for those with young onset Parkinson’s disease in the Westchester, New York area.  In January 2005, they secured a meeting room at White Plains Hospital, advertised with neurologists, and waited. After four months a few members showed up, then a few more.  Early members included Anthony Fente, Bob Roach, Anne Dowling, Janet Stram and Alex Abraham. We invited guest speakers to keep us informed and started planning social events to have some fun. We developed a trusting, supportive environment where our voices could be heard.

The group now has over 40 members. Both people living with Parkinson’s and care givers are welcome to join us.  Although we are considered a “young on-set” group we don’t turn anyone away as long as they are young at heart.  Our meetings cover a variety of topics including latest treatments, medications, symptoms, strategies for coping with work, sleep, life. All subjects are open for discussion at our monthly meetings.  We have formed true friendships and know that we can pick up the phone and talk to someone who understands our unique challenges. We are actively involved with the Parkinson’s community and share information and resources.

The first year we joined the Parkinson’s Unity Walk, Norma made a beautiful banner and left room at the bottom to add in subsequent years.  The banner has accompanied our group now for 12 Unity Walks.  It’s a reminder to keep up the fight, to support each other, and take care of ourselves.

We are proud of our group and the amazing networking that has placed our team (without any corporate sponsorship) in the top ten teams nationally for a number of years.  Last year, we had 21 registered walkers with many more joining us at the Walk and together, raised $17,314. At first many of us were shy about asking friends and relatives for donations.  What we began to realize is that people want to help.

Many of us have increased our donations by getting our social media savvy children involved. One example is Janet and Danny Stram’s son Scott who, year after year with the help of social media, collects thousands of dollars for his mother’s cause.

Alex Abraham, active member and facilitator of our group, discovered a talent for fundraising.  He begins fundraising for the Unity Walk in the fall and gives anyone and everyone he encounters the opportunity to contribute.  Alex’s philosophy is that it makes people feel good to donate and he has been very successful obtaining face to face donations.  He always has donation forms on him, keeps records of everyone who donates and contacts them from year to year.

Another aspect of the Unity Walk is the opportunity it affords for family and friends to come out and support us as we walk for a cure.  The atmosphere is positive, the walk through Central Park pleasant, the solidarity evident. Living with Parkinson’s disease is challenging but the day of the Unity Walk is always about hope.

Alex Abraham, Team Captain and Anne Dowling, Team Member
Young Onset Support Group of Westchester/Bronx

 

 

 

Parkinson’s Patients Pedal Toward Progress at the Boston JCC

February 27th, 2017 by Guest Blogger

Exercise has proven to be beneficial to people living with Parkinson’s disease. The best exercise for you is the exercise that you’ll actually do! There are so many different options today including Rock Steady Boxing, Dance for PD, yoga, NIA exercise and cycling – and so many more. Cycling is the one exercise demonstration that you won’t see at the Unity Walk because the logistics of delivering multiple stationary bikes to Central Park is beyond what we can accomplish. Since we can’t showcase cycling classes at the Walk, we thought we’d  use our blog to share some insights into the cycling classes being offered around the country.

Helaine Isaacs
PUW Event Director

Audrey Edwards and Holly Rabinovitz at the JCC

On Monday mornings, the Boston JCC offers a cycling class that looks like any other. But there’s more to this cycle class than meets the eye: Each of its students has Parkinson’s disease, a neurological condition that impairs movement and function.

Cycling on stationary bikes may provide symptomatic relief for people with Parkinson’s disease, especially if they cycle using what is described as forced exercise, i.e. pedaling at a rate faster than their natural cadence. Researchers found this type of cycling exercise appeared to make regions of the brain that deal with movement connect to each other more effectively.  Cycling gives individuals the opportunity to build lower leg muscles in a safe way and individuals may also see an increase in energy level while enjoying exercise in a group environment.  These are all truly beneficial to the population living with Parkinson’s disease.

The Boston JCC is the only fitness facility in the area to offer a cycling class for people with Parkinson’s and the interest and participation have been extremely positive.  The instructors are certified Parkinson’s Cycling Coaches in addition to being experienced cycle instructors, both of which are very important in this specialized cycle class. Karen Sauer, a class participant who never rode on a stationary bike before taking the class is very happy that she is participating in the cycle class. “I think I am probably in better condition than I would be if I didn’t have Parkinson’s disease.  It’s unlikely that I would be taking a cycle class otherwise.  Or the other gym classes.  That just wasn’t me, pre-diagnosis.  Yes, there are challenges, and it’s sometimes hard to tell what’s Parkinson’s disease and what’s aging, but I am optimistic about the future!  Thanks for making exercise fun!”

The JCC and the Movement Disorder Center at Beth Israel Deaconess Medical Center are partnering to provide a wide range of fitness programs to the greater Boston community. The offerings are part of the Edmond J. Safra National Parkinson’s Wellness Initiative, launched to improve the lives of people suffering from Parkinson’s, a chronic and progressive movement disorder.

Click here to read Boston Magazine’s feature story on the JCC’s cycling program.

If you’re interested in the JCC’s Parkinson’s programming, visit www.bostonjcc.org or call 617-558-6459.

Holly Rabinovitz
Assistant Wellness Director
Boston Jewish Community Center