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Archive for the ‘Guest Post’ Category

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

Tuesday, April 23rd, 2013

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

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

Monday, April 1st, 2013

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

Reel Therapy: Irish Set Dance & Parkinson’s Disease

Sunday, March 17th, 2013

Happy St. Paddy’s Day! We think this is the perfect time to share Terrance O’Dwyer’s knowledge of the therapeutic effect of Irish traditional (“Trad” for short) dancing on Parkinson’s disease. One of his goals is to get the word out: Trad “reely” helps!

Helaine Isaacs
PUW Event Director

Reel Therapy: Irish Set Dance & Parkinson’s Disease by Terrance O’Dwyer, Team O’Dwyer
Which is more probable – the chances of winning $50 million in power ball super lotto or, the likelihood of an Irish dancer and Irish composer naming a newly composed Irish jig tune after an Italian neurologist, who just happens to be a member of an Irish traditional music band (Trad for short,) and who has documented the therapeutic effects of Irish set dancing for those of us with Parkinson’s disease (PD)?

Trick question, to be sure, and I am not sure we have an answer. Clearly, the two events are pretty improbable. Nevertheless, two selections from Mary Beth Taylor’s new DVD entitled Sean Nos Jigs for Everyone are named in honor of Italian neurologist, Doctor Daniele Volpe. The story of how this all happened is remarkable.

Dr. Daniele Volpe

Dr. Daniele Volpe

Daniele Volpe is not an ordinary Italian neurologist. In addition to heading up the Parkinson’s Rehabilitation unit at the St. John of God hospital in Venice, he is a musician who loves Trad and who visits Ireland frequently to play in a band.The story began in June of 2010 in Peppers’ Pub, a Trad hot spot located in the tiny village of Feakle (population 126), in County Clare. Pepper’s regularly offers Trad nights where customers can enjoy music, and if so inclined, participate in set dances. One night, just as the band was about to start, the Italian doctor noticed a man with an unsteady but familiar gait enter the pub. “Someone with Parkinson’s,” he remembered thinking.

About 20 minutes later, the band opened the floor for a set dance, and Volpe was surprised to see the man with Parkinson’s among the dancers. What followed was incredible: the man who walked so unsteadily required no assistance to dance. Indeed, the man went through the moves effortlessly, as if he were a different person. Dr. Volpe was quite puzzled, and asked one of the band members about a particular leg movement he noticed. Thus Dr. Volpe learned about the Reel step.

Dr. Volpe made an important observation. For many with Parkinson’s, posterior-anterior advancement of the lower limb during the swing phase of the gait’s cycle is compromised. Yet, the Reel Step enabled a dancer with Parkinson’s to override these impediments.

But why? He surmised the answer may be dance steps associated with the strongly accented upbeat music that characterizes Trad. To test his idea, he ran a small-scale 6-month randomized study involving 24 patients who presented moderate stage Parkinson’s symptoms. While all forms of therapy were beneficial, the Irish set dance group improved more than the control in every measurement category.

Doctor Volpe presented his initial findings in June 2012 to the International Congress of PD and Movement Disorders in Dublin, and, followed his medical summation with the best presentation possible: his patients performed a set of dances before the audience of nearly one thousand.  Talk about pressure!

A report from Ireland prior to conference

A report from Ireland prior to the 2012 International Congress of PD and Movement Disorders in Dublin

One man’s reaction. I first read about the Volpe discoveries in October, 2012 and was overjoyed. I was first diagnosed with PD in 1997. I also love Trad and noticed that when listening to it, I could perform some dexterity tests – such as tapping my thumb with my pointer finger – for significantly longer durations than when without music. Moreover, I found my improvement with dexterity occurred only with Trad, and a few distant relatives, like a Cajun two-step. While I still have not learned to dance, I knew that Doctor Volpe was onto something, and I thought it would be wonderful for someone to name a piece of Trad music after him. The question was, how do I do this?

Enter Martin Tourish, one of Ireland’s leading Trad composers when he is not pursuing his doctoral studies in music at Dublin Institute of Technology. I sent an e-mail to Martin and within a day he wrote back saying that he had just finished composing ten Irish jigs for Mary Beth Taylor’s new DVD entitled, Sean Nos Jigs for Everyone. Eight were not yet titled, and pending Mary Beth’s approval, he would be delighted to name two of the jigs in honor of Doctor Volpe. A day later, he again wrote to say that she enthusiastically agreed.

Next steps. Follow-up testing is now underway with an international randomized trial being conducted by researchers from University of Limerick in Ireland and the University of Melbourne in Australia.

And the tiny village of Feakle will celebrate Doctor Volpe’s discoveries with two major events in August of 2013. As part of the 26th Annual Traditional Music Festival, organizers have invited Dr. Volpe’s dance group of Parkinson’s patients to be special guest performers. And, Doctor Volpe will present his latest findings at a conference on “The Therapeutic Effects of Irish Set Dancing in the treatment of Parkinson’s Disease.”

Finally, for anyone who does not know what set dance is, and for those that love it, here is a video of ‘reel music’ and its effect on happy feet!

Youtube set dancing

Aikido makes the difference for Ken Marvin

Wednesday, February 27th, 2013

3rd degreeKen Marvin has participated in the Unity Walk since 2003. In this guest blog post, he shares his experience with Aikido, the martial arts practice that he and his doctor believe has slowed the progression of his Parkinson’s disease. This is another example of what our walkers CAN DO to be proactive in managing this disease. It’s different for each person. Let us know what is working for you.
Helaine Isaacs
PUW Event Director

I was diagnosed with Parkinson’s at age 35. The most important decision I made about treating this disease was made five year before my diagnosis. In 1994, I decided to take a Martial Arts class called Aikido (Nihon Goshin Aikido) with the idea of getting my son(s) into it later. You see, my oldest son at the time was 3 years old and very skinny. I was afraid he was going to get picked on. I wanted him to have self-confidence and be able to defend himself. I did not plan to continue once he got going. Later, I realized I needed Aikido more than I knew.

It was October of 1999. The world was worrying about the year 2000 and its effect on the computer systems (Y2K). I was working for a large company’s Information Systems group in charge of the Y2K project for their Telecom department. It was a typical “bite off more than I could chew” day. I was in my office preparing for a meeting, getting a late start because I had just come from my flying lesson early that morning. I was a bit worn out having stayed up late to work on a project for the MBA program I was enrolled in. This is when I felt a flutter in my left pinky. My pinky was moving on its own. My assistant at work said “Maybe you have that thing Michael J. Fox has.” I just laughed. I thought it was a pinched nerve or something. See, I was also in the process of testing for a black belt in Aikido.

Less than five months later, at the ripe old age of 35, I was diagnosed with Parkinson’s disease (PD). I remember looking at my wife and we both looked at the doctor and said, “So, what do we do?  What medicines, etc.?” There was no shock; no “why me?” moment. I think we both already knew. I was trained in Aikido to blend with whatever comes your way. This was no different. Over the next two years, I focused on what was important in my life. I stopped the MBA program because I was in it for the wrong reasons. I had to put down flying lessons due to medications. I eventually went out on disability from work to relieve the stress. I also realized how much the training and teaching in Aikido was helping me physically and mentally.  My neurologist, Dr. DiRocco, and I believe that my Aikido training has a lot to do with my continued health and slow PD progression.

Fast forward – I am now 48 with a wonderful wife and four boys ages 13-21. In the 13 years since my diagnosis, I’ve continued as a student and instructor in the art of Aikido and recently obtained my 3rd Degree Black Belt in our 5 Degree system. I teach classes every day but Sunday. Other than tremors and soft speech, I do not have many of the issues you would expect after 13+ years with Parkinson’s disease. Balance has never been an issue. No rigidity. Even the tremors stop when I do a technique in Aikido. Click on the image below to view the youtube video I created about Aikido and its impact on my Parkinson’s disease.

Youtube imageAikido is all about balance and being one with your environment. Continually moving from your center of gravity, keeps your body balanced. The discipline keeps the mind in balance. The exercise in general is good for the body. We even do stretches designed to keep your wrists flexible. This art is exactly what I need to keep me healthy.  Aikido found me before Parkinson’s set in. I believe it was by the grace of God.

Ken Marvin
Team Captain, Miracle Marvins

Finding your empowerment

Monday, February 11th, 2013

In keeping with our theme of “What You CAN Do”, we are deligthed to feature a blog post from Karl Robb, a blogger, Parkinson’s advocate, writer, inventor, speaker, photographer,  and Reiki master.  His new book, A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease is available at Amazon.com and BarnesandNoble.com in paperback and eBook formats.
Helaine Isaacs
PUW Event Director

Kar Robb asoftvoice_coverThe diagnosis of Parkinson’s disease (PD) at the age of 23 was both frightening and yet, cathartic. I didn’t know what I had but part of me wondered if it might be a brain tumor.  At such a young age, I was unaware of what PD was, but I knew that I was going to have to learn to live with it. My body was out of control. My feet shuffled, my posture was slouched, and my foot began to tremor for no apparent reason.  I received my diagnosis over 20 years ago, after seeing nearly a dozen doctors. Had I known what I know now, I would have taken charge of my illness even sooner than I did.

Throughout my life, I have observed how PD poses unique issues for each individual that is struck with it. My book, A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease is a lifelong collection of tips, suggestions, and advice that has served me well. There is no doubt that illness limits our capabilities but it doesn’t mean that we don’t have options. Parkinson’s disease changes your life, but it doesn’t have to destroy it.

There is still so much that you can do. A proactive and investigative search into complementary therapies, stress relief techniques, and an overall health regimen may serve you well. What works for one may not be of benefit to another. Finding the modality that works for you is vital to your health and healing. For me, my life changed at the introduction to Reiki.
Karl Robb
Fourteen years ago, I wasn’t looking for Reiki (a complementary therapy using light touch that reduces stress), but it found me. My friend and longtime teacher had just moved his practice less than a mile from my home in Virginia. Someone totally unrelated to Reiki and in another state gave me my teacher’s name. I was reluctant to investigate Reiki because it sounded so new age and indescribable.

Cautiously and a little reluctantly, I went to see what Reiki was all about. When my now teacher and dear friend explained the benefits of Reiki, it sounded too good to be true.  As unconventional as Reiki sounded, I needed something to boost my energy, reduce my dyskinesia, and help me with my balance. I was willing to give it a try with little to lose.

I skeptically got on the massage table (fully clothed) and 90 minutes after my very first session, I was hooked. My body felt lighter, all my stress had faded away, I felt invigorated, and my walking showed improvement. Since the first treatment, I received numerous Reiki treatments and over 14 years, I have trained and learned to work on myself and others. For me, I know that Reiki has allowed me to do so much more. Reiki has not cured my PD but it has quelled many of the symptoms that plague PD patients.

Finding what works for you can take careful and thorough investigation. Therapies like yoga, acupuncture, massage, cranial sacral, Reiki, and others may help you and have little to no risk. Working with your doctor on the medical side and finding a complementary therapy may very well prove that there is more that you can do for yourself.

Karl Robb