Supporting the Unity Walk from a distance

May 3rd, 2013 by Helaine I., Event Director

kameronMTLindseyCroppedWEBThere are many supporters of the Parkinson’s Unity Walk who can’t join us in person for the Walk in Central Park but are there with us in spirit. Kameron Allison is one of those individuals. Kameron drove from Texas to Colorado to climb Mt. Lindsey with his friends this past Saturday in honor of his mother, Katrina Allison. Together, Katrina and Debbie Flamini make up the “Debina” of Debina’s Movers & Shakers. Kameron is pictured here with their blue team t-shirt. Reaching the summit takes determination and commitment - the very same qualities our walkers display as they strive to raise funds for a cure.

If you couldn’t join us in New York, let us know where were you as you supported the Walk. We’d love to hear from you!

Helaine Isaacs
PUW Event Director

 

The Edmond J. Safra Parkinson’s Wellness Program will provide Tai Chi and Nia Dance demonstrations at the Unity Walk this Saturday

April 23rd, 2013 by Guest Blogger

As we thought about the type of entertainment we wanted to offer at the 2013 Unity Walk, we decided to select programs that highlight what people living with Parkinson’s disease are doing to stay healthy. That is what The Edmond J. Safra Parkinson’s Wellness Program is all about. I had to check it out myself so I spent an afternoon there. I participated in a Nia class, and met Amy Lemen, the Center Coordinator and the Nia and Tai Chai instructors. The workout kept me moving and the energy in the room moved me. We are delighted to have Amy Lemen introduce their program to you in anticipation of Saturday’s Walk.

Helaine Isaacs
PUW Event Director

nia group celebrateIt’s been an exciting time this spring as the NYULMC Parkinson and Movement Disorders Center has prepared for this year’s Unity Walk.  Participants in The Edmond J. Safra Parkinson’s Wellness Program – our community partnership with the JCC in Manhattan – have been abuzz with anticipation and their enthusiasm for the opportunity that the Walk provides has been inspiring.

The Edmond J. Safra Parkinson’s Wellness Program is honored to be featured at this year’s event.  We will be presenting demonstrations of several of our program’s popular fitness classes – Nia: Music and Movement and Tai Chi. We’re proud that many of our Program participants have graciously volunteered to show their strength and their moves with Nia instructor Caroline Kohles and Tai Chi instructor Lewis Paleais on the Bandshell stage immediately following the walk.

Additionally, our Bold Moves Walking Group has been training for the past ten weeks for Saturday’s Walk.  Bold Moves was designed specifically for people with Parkinson’s as a training program to build confidence and endurance in preparation for the Unity Walk.  Bold Moves team members have committed to supporting each other with weekly group walks through Central Park and the streets of the Upper West Side.  The Walking Group is up to 2 miles per walk – Coach and fitness trainer Jody McVey and team coordinator Cheshire Schanker have been with the group every step of the way.

Tai Chi walkingProgram participants will be joined by their biggest fans – staff members from the NYULMC Parkinson and Movement Disorders Center, the Rusk Institute for Rehabilitation Medicine and the JCC in Manhattan. In addition, students from the NYU School of Medicine and the NYU Silver School of Social Work, are looking forward to joining the walkers and supporting the festivities at this year’s event.

Since 2007, the Edmond J. Safra Parkinson’s Wellness Program has focused on dignity, hope and possibility while building a welcoming hub for the Parkinson’s community. Our goal with the program is to help keep those impacted by Parkinson’s active, educated and connected through opportunities to come together in fitness classes, support groups and educational and socialization events.  We’re proud of the work that our patients, caregivers and families do every single day to live well with PD.

Over the years, our program has been inspired by the Unity Walk and all that it does for the Parkinson’s community, as we work toward more options, better treatments and a cure.  We at the NYULMC Parkinson and Movement Disorders Center are grateful to the Unity Walk for what it gives to our patients, caregivers and families – a unique opportunity to come together as a community while working together toward the common goal of raising funds for Parkinson’s research.  It is an exhilarating example of unified grassroots action in an effort towards positive change.

New York City is alive with excitement for the Unity Walk and we’re thrilled to be a part of it.  Our Team will be proudly wearing purple Bold Moves t-shirts – look for us, we’d love to say hello. We look forward to seeing you very soon!

Amy C. Lemen, MA, MSW, LCSW
Center Coordinator and Clinical Neurology Social Worker
Supervisor, The Edmond J. Safra Parkinson’s Wellness Program
NYULMC Parkinson and Movement Disorders Center

Thinking of Boston today

April 15th, 2013 by Katherine S., Manager, Events & Social Media

So here we are now less than 2 weeks away.

And as we’re doing last minute finishing touches, our day comes to a halt.  In the midst of dotting our i’s and crossing our t’s, our hearts and minds turn to Boston and to all families who are affected by the explosions at the Marathon today. There are Parkinson’s Unity Walk teams and walkers from all over, and we hope that those who are based in Massachusetts are okay.

Please know that we are always conscious of security issues at our event, particlarly this year, and regularly engage a security company to provide services at the Unity Walk, throughout the event and on the Walk route. We have already arranged for increased security coverage at the Walk based on last week’s events in Boston.

Stay “Jersey Strong” Bostonians!!!

Spring is in the air (FINALLY!) and the Unity Walk is near

April 12th, 2013 by Helaine I., Event Director

 

72nd St bus shelter signI spent Wednesday in New York’s Central Park for a site visit. It was a glorious day to be in the city! The skies were blue, the temperature was warm and the buds are starting to show on the trees. We’ve been waiting for spring for a long time and we think it’s finally here – just in time for the 19th Parkinson’s Unity Walk in two weeks. I walked the 1.4 mile route with our contact from the Parks Department and our security agents, all in preparation for the Walk. If I closed my eyes, I envisioned the Bandshell filled with thousands of members from the Parkinson’s community, wearing their team t-shirts and carrying their signs. We look forward to being together again as a community.

As I was walking towards the subway to take me back to Penn Station and the train the NJ, what did I spot as large as day? It was a bus shelter with an ad about the Unity Walk! Media space like this throughout New York City has been donated by the Wilkins Parkinsons Foundation. We are very grateful for their continued support. Look for these ads on NYC buses, subway platforms and entrances, taxi tops and even in tv ads in NYC taxis. We are taking NY by storm! Help us spread the word. Tweet #puw2013 if you see one of these ads, or post a photo of you next to the ad on Instagram or on our Facebook page. You can also email it to us at info@unitywalk.org.

See you on the 27th!

Helaine Isaacs
Event Director

The Simple Secrets that Can Make a Difference “Today” in Your Parkinson’s Disease Care

April 1st, 2013 by Guest Blogger

Michael Okun's book coverAs we all prepare for the Unity Walk and for other walks and races that will raise money and awareness for Parkinson’s disease across the globe, it is important that we keep in mind the simple tips and secrets that can improve the lives of sufferers. One secret that is kept a little bit too tightly by Parkinson’s disease experts, is that the Parkinson medication interval (timing) is as important as the dose. Here are some practical tips that can improve the number of hours of good quality functioning in each day for a Parkinson’s patient:

  • If the medication is wearing off before the next dose, consider moving dosages closer together.
  • It is not uncommon for some Parkinson’s disease patients to require medications even as close as every 2-3 hours.
  • If you experience dyskinesia (extra movements usually an hour or more after a medication dose) you may need to decrease the dose, and move the medication intervals closer together.
  • Medication timing usually changes as Parkinson’s disease progresses.
  • Remember in Parkinson’s disease timing is everything!
  • Sometimes before a big race or athletic event Parkinson’s patients will take an extra dose of medication.

I write several blogs for Parkinson’s disease patients to learn and exchange the secrets that can help them to live a happier life -  Parkinson’s Treatment: 10 Secrets Blog  and National Parkinson Foundation What’s Hot in PD Monthly column.

The most humbling experience of my life has been the time I have spent with families, and with patients suffering from Parkinson’s and chronic neurological diseases. I use the word humbling, because time after time, in person, and also on the web forum, we have uncovered simple and addressable issues and secrets that have changed people’s lives. For some sufferers it has meant walking again, for others it has restored their voices, and for many it has resulted in the lifting of a depression, anxiety and desperation cloud that has obscured their dreams, and robbed them of potential unrealized happiness. I never assume a sufferer or family member is aware of the “secrets” that may lead to hope and to a happier life. We must share these secrets, and this is the purpose of this website.

My newest book, Parkinson’s Treatment: 10 Secrets to a Happier Life was published on April 1, 2013 for Parkinson’s Awareness month. We will provide translations of the book and its secrets into over 20 languages, so that we can help people from all worldwide cultures and languages. In each chapter of this new book I will reveal an important secret, and will explain the insight, the rationale, the empiricism, and the science behind it. Additionally, in each chapter I will try to reveal a little more about myself, and a lot more about the patients and talented clinicians who gifted the secrets.

These patients planted the seed of faith. They learned to grow hope, and they discovered the core values necessary to achieve happiness despite chronic disease.

For more information, click on Amazon or Smashwords.

Michael S. Okun, M.D.
National Medical Director, National Parkinson Foundation