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Archive for the ‘Exercise’ Category

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

Parkinson’s Patients Pedal Toward Progress at the Boston JCC

Monday, February 27th, 2017

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

Brooklyn Parkinson Group

Friday, November 4th, 2016

Support groups have a strong presence at the Unity Walk and Brooklyn Parkinson Group (BPG) leads the way. They have grown in size, spirit and offerings and convey the support that is derived from their group. Not all support groups offer the same breadth of classes but the sense of connection and community is available in all of them. We’ve invited Leonore Gordon, Team Captain of the Brooklyn Parkinson Group’s team at the Walk to share her experience of BPG.
Helaine Isaacs
PUW Event Director

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The actual home of Brooklyn Parkinson’s Group (BPG) has been, since 2001, in downtown Brooklyn, in a building owned by the world-renowned dancer/choreographer Mark Morris, who heads his own dance company and public dance-school, located up the block from the famed Brooklyn Academy of Music. However, the whole notion of people with Parkinson’s benefitting from dance was the brain-child of Olie Westheimer, another Brooklyn resident who brought the idea to Mark Morris in 2001. Shortly thereafter,  Dance for PD® was launched as a non-profit collaboration between the Mark Morris Dance Group and BPG.

Mark Morris generously offered space for the Brooklyn Parkinson’s community to house our dance classes and, over time, our singing and movement classes, and monthly support groups for People with Parkinson’s (PWP) and their caregivers. Morris threw in the bonus of providing two of his top dancers as our dance teachers, David Leventhal and John Hegginbotham, joined for many years by Misty Owens, a gifted tap dancer and dance teacher. The icing on the cake was the added gift of a live pianist/composer of exceptional talent, William Wade, who played (and still plays) piano during the dance classes, who went on to teach and lead the PD singing group.

It wasn’t long before the popular Friday “PD Movement Lab” was added to the line-up, led by another celebrated BPG star, professional dancer and choreographer Pamela Quinn, who lives with PD herself. Quinn now also leads classes in Manhattan, and travels across the globe, teaching her techniques.

Birthed at the start of the 21st century, this new organism, “Brooklyn Parkinson’s Group” became a life-raft not only for me, but for dozens of others, (today numbering in the hundreds) some arriving from New Jersey, Long Island and the four other boroughs. I began to gratefully partake in the free weekly classes for PD folks and care-partners in dance, movement and singing in 2003, gradually rescheduling my hours as a family therapist and Resident Poet in the NYC public schools so I could attend. Participation slowly became a necessity, motivating me (and countless others) out of our houses and into the welcome company of peers struggling to adjust to living with Parkinson’s.

By 2008, my own progressing symptoms forced me (not unlike innumerable compatriots) to reluctantly retire from my two careers. By then, fortunately for me and about 15 others, a new partnership had recently emerged between BPG and Long Island University, initiated by a lawyer living with PD. LIU was just a few blocks away, and we jumped at the chance to attend twice-weekly aerobic and weight-training exercise classes.

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Suddenly, nearly every weekday, classes had become available, strengthening our bodies, our voices and our spirits. Of equal value, this daily-ness and continuity allowed many of us to become a community, and a family. Traveling between boroughs, we began to share meals, birthday celebrations, attend theater together, sign up for boat rides to see fall foliage, to visit one another in hospitals, and sadly, to jointly attend way too many funerals.

In 2011, one of our dance teachers, David Leventhal, once a lead dancer with a soaring career in the Mark Morris Dance Group, astonished us all by leaving the dance group in order to become director of “Dance for PD.” He began to train interested dancers to initiate new Dance for PD classes across the US and eventually, throughout the world.  His program and techniques are being taught in over 100 communities worldwide.

In 2013, after being filmed for a year by documentary filmmaker Dave Iverson (who also lives with Parkinson’s) and videographer Eddie Maritz, a beautiful hour-long film, “Capturing Grace”, was released. The film followed our dance community for over a year as we prepared for a final professional dance performance in 2012, and the film won Audience Favorite awards at film festivals across the US, eventually appearing on PBS.  “Capturing Grace” has inspired viewers with Parkinson’s world-wide to dance and to believe in their abilities to feel graceful again. capturinggracefilm.com

BPG and Mark Morris Dance Company are still partnering to offer dance and singing classes in all five boroughs, as well as in New Jersey. Thus explains the fierce loyalty of the Brooklyn Parkinson’s Group. At the end of the day, we all share a common bond of one extraordinary, creative, patient-based Parkinson’s community in the greater New York City area.

Leonore Gordon
Team Captain, Brooklyn Parkinson’s Group & Friends

 

Rock Steady Boxing – One Walker’s Experience

Monday, March 7th, 2016

Double photo #1 Mike Achin RSB copy

I was excited to hear that Rock Steady Boxing (RSB) will receive the Bonander Award at the Unity Walk this year. Over the last two years, RSB has become a very important part of my life. It has taught me a lot about fighting Parkinson’s disease (pd) and not giving up. The more we learn about pd, the more we learn that staying active through exercise is important. A body in motion stays in motion! There are many ways to stay active such as running, swimming, walking, yoga, etc. Just pick what you like to do and start doing it!

Two years ago at the World Parkinson’s Congress in Montreal, my wife, daughter and I attended a working seminar called Rock Steady Boxing. I immediately fell in love with it. It’s everything I had been searching for. I was so excited about this program! That same year at the Unity Walk, more information was available about RSB. The problem was they were in Indiana and I live in Massachusetts. I was searching for answers and trying to figure out how I could bring RSB to my area. I was getting frustrated but then I heard some good news. There was a boxer in Rhode Island who was going to open up his gym to Rock Steady Boxing. My prayers had been answered!!! Rich Gingras, along with my fellow pd warrior Mike Quaglia, had gone to Indy to get trained and BINGO, RSB had a home in Pawtucket, RI. That’s how I got involved. Now let me explain why I love RSB.

The word “boxing” scares some people off. They think we get in the ring and pound each other. Even though that might be fun it’s not what happens. We do everything else a boxer would do such as, footwork (don’t shuffle!!), stretch those muscles (so we don’t become rigid and hunched forward), and yes, putting on the gloves and hitting the heavy bag, hand pads and our new toy, the dummy. Our classes include people living with pd at every range along the continuum of this disease, from those confined to wheelchairs to those just diagnosed, and everything in between. Men and women, ages 30 to 80, all come to battle pd and take charge of our lives.

Everyone who enters our gym immediately becomes part of our band of brothers and sisters. We laugh, cry, enjoy the good days and help each other through the hard days. We are ONE, fighting back at pd!! When you enter our gym it is time to get to work. Get your hands taped up and start walking or jogging. We need to get our hearts pumping. It is now proven that a strenuous exercise program can slow the progression of pd. I have seen it over and over again at RSB. After we warm up, we do a good 15 to 20 minutes of stretching. This is so important in fighting the stiffness that pd tries to give our body. We learn new ways to stretch. We can do these on our own at home too. Last but not least, get the gloves on!! “It’s just you and me now pd … and I feel good. I am going to knock you silly!!” Every participant in the class works with a partner and we encourage one another to work to the best of our ability. We are all learning to take control of our lives and knock the crap out of pd. It feels good to let loose and pound that bag. You are swinging with your left and right hand, your good side and your bad side. You are stretching to hit the bag. You are using footwork. All things that we pd fighters have trouble with from time to time. Magically, you are swinging, jabbing, punching, and moving those feet – not every time, some days are a struggle. You actually feel good and you forget you have pd!!!! It’s a strenuous workout and if you do it right, you feel great and you’re exhausted.

Mike #4
There is also a bonus I did not expect from RSB. You become close to your fellow boxers; they become like family. We all know how much pd has tried to take away from us. But now we fight back – we sweat, fall, work through the times the meds are not kicking in, laugh, and cry … don’t mess around with my new family!! I love them all. At the end of every class we gather with a chant – one, two, three … FAMILY!! Outside of the gym we do the best we can. This is my life. This is how I take charge. These are my people!! What are you waiting for? Find a RSB near you and change your life forever!!

Note: pd is purposely not capitalized. I refuse to give it any respect.

Mike Achin
Team Member, Team DominACHIN over PD