On April 28, 2017, my Mom and I attended the Michael J. Fox Foundation MVP Dinner for Team Fox members in New York City! It was a life-changing, uplifting night, and was incredible to be in a room surrounded by people who are all passionate about the same goal -- raising $ and awareness to find a cure for Parkinson's disease.
We are already busy planning for our 2017 event -- stay tuned for details! As my Mom often says "Parkinson's isn't an incurable disease -- it's a disease that hasn't been cured yet."
So grateful to be part of the Team Fox family.
I spent the first 8 years of my career living and working in New York City. When my Mom came to visit from Boston, one of our favorite things to do was to drop into a Dance for PD® class at Juilliard or at The Mark Morris Dance Group in Brooklyn. Dance for PD® was one of my first experiences being in a large group of people who were all going through a similar journey as our family. At every single class, there was such a strong feeling of joy, togetherness, and community, and it's something I truly hope everyone in the PD community gets to experience at some point. I am so grateful that David Leventhal, the founder of Dance for PD, took the time to talk to Photo Shoot for a Cure about how he came to found the class, how it's changing lives, and what's next for the program.
What is Dance for PD?
Born from the idea that people with Parkinson’s could benefit from the insight and specific techniques and methods used by dancers to guide their own bodies and minds, Dance for PD® strives to increase coordination, balance, flexibility, and strength through music and movement from a broad range of dance styles. In classes led by professionally-trained dancers and musicians, participants experience the grace, fluidity, and power of dance in a social, joyful, and supportive environment. Dance for PD's fundamental working principle is that professionally-trained dancers are movement experts whose knowledge about balance, sequencing, rhythm and aesthetic awareness is useful to persons with PD. In class, teaching artists integrate movement from modern, ballet, tap, folk and social dancing, and choreographic repertory to engage participants' minds and bodies and create an enjoyable, social environment that nurtures artistic exploration. Dance for PD was conceived in 2001 as a collaboration between the Mark Morris Dance Group (MMDG) and Brooklyn Parkinson Group, and is now administered by MMDG. Through our innovative community classes, acclaimed international teacher training program, and high quality media resources, the Dance for PD program in New York serves as a model for a network of affiliated programs in more than 120 communities in 43 states and 16 countries around the globe. Dance for PD also leverages technology—live streaming, a popular instructional At Home DVD series, and an experimental App for Google Glass—to make the program more available to its diverse and expanding network of constituents around the globe.
What motivated you to start the Dance for PD program?
In 2001, Olie Westheimer, the Executive Director of the Brooklyn Parkinson Group, approached the Mark Morris Dance Group with the idea for a real dance class for members of her group. Olie felt that people with Parkinson's spent lots of time thinking and talking about Parkinson's, shuttling between doctors' and therapists' offices. She wanted people to do something positive together and she had a hunch that a dance class, taught by professional dancers, was that thing. Olie and the teachers work together to maintain the artistic spirit of the program, which is, as it was on the first day, accompanied by live music. The idea is for professional teaching artists to integrate movement from modern, ballet, tap, folk and social dancing, and choreographic repertory to engage participants’ minds and bodies and create an enjoyable environment for artistic exploration. Because Dance for PD focuses on the aesthetic movement of dance rather than acting as therapy, participants in class are encouraged to approach movement like dancers rather than as patients. I think Olie's hunch was exactly right, and now I see a strong and consistent desire among persons with Parkinson's around the world who've experienced the class to explore movement and regain a sense of confidence and grace in a creative, musical, and social environment outside the traditional parameters of physical therapy and clinical rehabilitation. I taught the very first class, and worked with my colleagues John Heginbotham and Misty Owens to develop an approach and curriculum. Olie and members of BPG were instrumental in providing feedback about what worked and didn't worked, and that sense of community collaboration has been a consistent thread through the program's development, wherever Dance for PD has taken route.
Did you have any personal connections to Parkinson's before starting the program?
No. My interest in working with people with Parkinson's stemmed from an interest in teaching--I was very interested in opportunities to teach people other than professional dancers or pre-professional dance students. The thought of teaching people with movement challenges was intriguing--and it ended up being more satisfying and compelling than any other teaching I do. Interestingly, when we started, Olie didn't want us to know much about Parkinson's aside from some basic safety information. She didn't want the class geared towards symptoms--she wanted the focus to be on the artistic process and on learning the art and craft of dancing.
What is the connection between dance, exercise, and Parkinson's? In addition to physical benefits, does dance benefit the cognitive aspects of PD?
Dance and exercise both address balance and mobility, but dance addresses those issues by teaching people how to think about them strategically and consciously. Dancers spend their whole lives practicing ways to stay balanced and mobile, and in a good dance class, the teacher uses imagery, rhythm and technique cues to pass that information on. Dance also has a high adherence rate--because it's often more enjoyable than a straight exercise program, people come back week after week to work on their skills. That's why increasing numbers of people with Parkinson's around the world recognize dance as an activity that addresses physical, emotional, cognitive and social needs very effectively, and does so in a fun and creative environment. For me, the cognitive components are particularly compelling because in a dance class, you need to mirror, sequence, improvise, tell stories with your body, and attempt to achieve aesthetic and spatial goals (ie, where the body needs to be in space at a specific time) in very specific ways. When you compare the cognitive work that happens in a dance class with what happens on a bike or treadmill, you realize the dance class is on a very different level of thought and planning. I've heard comments about how much the class helps people physically but also makes them think hard. Music also plays a critical role in learning and executing movement, and many participants ell us how dancing to music helps them achieve a state of fluidity and mobility that they may not find in other movement forms.
We've attended your classes in New York, and there was such a strong sense of community among the dancers. In addition to the health benefits of your classes, has the program become a community for people with Parkinson's?
In many ways, the social benefits are as important as the physical benefits. Dance has a natural way of bringing people together, breaking down inhibitions and barriers, and creating a sense of exchange and collaboration, even between strangers. We also emphasize the communal elements of the experience--starting and ending class in a circle, creating group line, circle and partnered dances, providing time before and after class for people to relax and talk. What we find, everywhere in the world that Dance for PD classes get established, is that a connected community starts to form, and that sense of community grows stronger and stronger so that it overflows the walls of the dance studio and continues out into peoples' lives--they meet after class, outside of class, go to events together. The dance class and the activities in class act as a strong social glue that percolates into other areas of their lives.
How many participants did you have when you first started the class? How many participants do you have now?
We started with eight participants in Brooklyn in October 2001. In Brooklyn, every week, we now have 40-50 participants--and our classes in Manhattan (we have classes in seven locations throughout New York City) are all at capacity, between 25-50 depending on the space. Internationally, we estimate that thousands of people are now participating in weekly classes based on the Brooklyn model.
Have any of your participants' stories stood out to you?
We hear inspiring stories large and small all the time. One man used the tap steps he learned in the Brooklyn class to help him connect with the floor when he got out of bed in the middle of the night. One woman recently told us that she was able to enjoy herself at a wedding because she danced all night--and she was able to do that because she developed confidence and stamina in our class. Sometimes, a smile speaks volumes. A couple in Louisville told me that they enjoyed themselves more in the Dance for PD class than they had in the last five years. One of our Brooklyn students tells us that his doctor knows when he hasn't been in class, because certain symptoms are worse. One of our teachers shared a story about a woman who arrived each week with her back and shoulders skewed and frozen. She spoke about her back and shoulder pain and that she had been doing exercises prescribed by her physical therapist. In dance class she did the exercises very seriously, often instead of what the rest of the class was trying to do. In the more open improvisational phrases she always did the physical therapy exercises. As the weeks went by she began to watch the teacher more and try out the different movements the class was exploring. She stopped doing the PT exercises and she began to smile with the dancing. For the first time the teacher saw flow and expression and extension. At some point she tearfully came up to the teacher to say that her shoulder and back were remarkably better, that her PT was surprised at the improvement and advised her to “keep going to dance class!”. Every couple of weeks she tells her teacher again, with great emotion, how she credits the dancing with her improved mobility and comfort. I love that story.
Is there always live music accompaniment in Dance for PD classes?
In New York, and in several other cities like Seattle, London, the San Francisco Bay Area, and Houston, classes always have live musical accompaniment. However, there are many locations where teachers don't have the musical resources that larger cities have, and rely on inspiring, well-chosen recorded music. And when I go out and teach demo classes on the road, I often have to rely on recorded music. But here in New York, we are lucky to work with incredible musicians who are our partners. It makes such a difference to have another artist in the room, contributing ideas and creative input.
How many cities have Dance for PD programs? Do you have plans to expand them further?
The program is in more than 125 communities in 16 countries around the world. We are interested in further expansion, but only if it can be done sustainability in a way that the programs that get established are led by knowledgeable, compassionate, well-trained teaching artists and are set up using a collaborative model that ensures financial stability and reliability (we don't want a program that gets set up one year and then can't support itself the next year). We also want to focus our resources on deepening existing relationships to provide richer programming (performance opportunities, for example) and providing professional development opportunities for our network of teachers.
How did the movie Capturing Grace come about? What has the response to the movie been like?
Dave Iverson, who directed Capturing Grace, was working on a documentary for Frontline called My Father, My Brother, and Me, which explored the scientific, medical and political dimensions of Parkinson's through a very personal lens--Dave, his brother and dad all had been given a Parkinson's diagnosis. As part of that film, Dave visited and shot part of a Dance for PD class my colleague John Heginbotham and I were teaching in Oakland. And during that filming session, Dave was inspired by what he saw. He mentioned that he'd love to focus on Dance for PD more deeply on his next project, but I didn't know he was actually serious until he called me six months later and sent me a proposal for the film that became Capturing Grace. It was a great honor to work with Dave and his team on the film over a period of three years. Dave is an eloquent, compassionate and enormously gifted storyteller, and his integrity, passion and empathy for the Brooklyn Parkinson's dancers is evident through every frame of the film. Even so, I think the overwhelmingly positive response from audiences and critics and the string of awards the film received took us both by surprise. Dave and I have both used the film to stimulate important conversations about the value of dance and the arts in helping people live well with Parkinson's, and thanks to Dave's directorial choices, Capturing Grace makes the case for the importance of care in addition to cure when we're looking at resource allocations within the Parkinson's community.
Do you have DVDs or online courses that people can take from home?
Our At Home DVD series features three DVDs--each DVD has a complete Dance for PD class that can be done in the comfort of your own home. The format of the DVDs allows people to learn material directly from a Dance for PD founding teacher, and then practice that material with the teacher and members of the Brooklyn Parkinson Group. We want people to feel, as much as they can, that they are joining us in the studio. Each DVD also has a 'through class' as a separate set of tracks--so once you've learned and practiced each activity, you can just put the DVD on and do the class straight through without having to listen to the explanations. In partnership with Canada's National Ballet School (NBS), we've also started broadcasting a free monthly live stream from the Brooklyn and Toronto classes. These streamed classes are then archived and available through the Global Hub maintained by NBS, and they provide another way for people to engage with us at home.
Did you attend The World Parkinson Congress this past September in Portland? What were some highlights of the conference?
The Congress was a transformative opportunity to connect with a broad cross-section of the Parkinson's community. For me, the highlights were primarily in the movement-oriented and artistic areas--the breadth of activities in the Renewal Room and the terrific performance and film festivals. The Congress is such a unique opportunity for people with Parkinson's, doctors, researchers and those of us providing programs and services to the community to convene, exchange and learn from each other. I was also very honored and humbled to be one of three recipients of the WPC Award for Distinguished Contribution to the Parkinson Community. Eli Pollard, the executive director of the World Parkinson Coalition, which produces the Congress, deserves enormous praise and gratitude for her vision and abilities.
For more information, please visit www.danceforpd.org or call 1-800-957-1046. For information about Capturing Grace, please visit www.capturinggracefilm.com. For information about Moving Through Glass, an experimental dance-based app developed by the Dance for PD team in collaboration with SS+K, please visit www.movingthroughglass.org.
Thank you so much to David Leventhal for taking the time to talk about Dance for PD! We loved our experiences joining his class in New York, and look forward to visiting the Boston Dance for PD class sometime soon!
Photo Shoot for a Cure is a series of fundraising photo shoots benefiting The Michael J. Fox Foundation for Parkinson's Research. The series is produced by photographer Diana Levine, inspired by her Mom who was diagnosed with PD 11 years ago. To date, Photo Shoot for a Cure has raised over $9.000 for Parkinson's Research. We have shoots coming up in Boston, New York City and beyond. To stay up to date, join our mailing list, like us on Facebook, and follow us on Instagram.
I began Photo Shoot for a Cure on a mission to combine my work as a photographer with my passion for raising money for Parkinson's research. So, to put it lightly, I was thrilled when I discovered Squar'd Away -- a handcrafted bandana company from New York City that donates 20% of their proceeds to The Michael J. Fox Foundation. Squar'd Away is run by Sara Harari-Buchnea, who is combining her love of design with her passion for raising money for Parkinson's research, in support of Dad, who was diagnosed with PD 10 years ago.
Squar'd Away bandanas are stunning, luxurious and handcrafted right in New York City. I'm so grateful Sara took the time to talk to us about how decided to start Squar'd Away, and how her Dad's experience with Parkinson's has influenced her life.
Tell us about Squar'd Away! How did you come up with the idea of launching your company?
The truth is I’ve been obsessed with bandanas and neck scarves for quite a while. They’re the perfect little accessory and have the ability to completely transform a look by either softening it or by adding an edge. I had been seeing them all over Brooklyn and realized there were barely any mid-range options between say, a cotton bandana from Levi’s and a super high-end scarf from Hermès.
What is your educational and career background? Have you always been involved with fashion design?
Not at all! As far as experience in fashion design goes, I have one (pretty short) internship under my belt. I wrote for an online fashion magazine for over a year but that’s another world altogether. My education and background are in visual arts. I studied Art History in undergrad and got an MA in Visual Arts Administration, which was half business school, here at NYU. I had been working in the art world for the past ten years, in a few Toronto and New York galleries and museums and even at an art fair for a while. Squar’d Away took me a long time to build because I had to figure everything out as I went along.
What is the process behind handcrafting your bandanas? Can you walk us through the process from first design to final product?
I work with some amazing designers who take my (sometimes cloudy) vision and make it a reality. The scarves are printed with American made inks in lower Manhattan and then they make their way over to Brooklyn where they are individually cut out by hand and then sewn on hand operated sewing machines one at a time. Packaging/order fulfillment is also done out of Brooklyn.
Why is it important to you that the bandanas be handcrafted in New York City?
Working locally with manufacturers in NYC allows me to be personally and closely involved in the production process. This helps me to create the product with a lot of TLC and bring my customers something I’m always proud of.
Can you share some ideas for how to incorporate bandanas into your wardrobe or outfit?
There are TONS of ways to rock your bandana like a boss. If this is your first square, a good way to ease it into your wardrobe is to tie it on your favorite bag or around your wrist like a bracelet. With every order, you get a poster with lots of great and easy ways to style your square and we also have (nearly) endless “square-spiration" on our Tumblr. It is frequently updated with amazing street-style looks featuring bandanas.
20% of all proceeds from Squar'd Away are donated to The Michael J. Fox Foundation for Parkinson's Research. What is your connection to Parkinson's?
The donations to The Michael J. Fox Foundation are in support of my Dad who has been living with Parkinson's for ten years. When he was first diagnosed, my mind was constantly racing with ideas about how I was going to help out and give back, so the time for me to step up to the plate is long overdue.
Can you tell us more about your Dad? How has he influenced your life and work?
Well, work-wise, I definitely got my love for art and aesthetic sensibilities from my Dad; he loves going to art museums and is a beautiful painter. I’ve always had a deep admiration for my Dad because of how well he’s done for himself and his family despite the many challenges he’s faced throughout his life. While his extraordinary intelligence has always fascinated me, it is his true kindness that often shifts my perspective. A lot of the courage that I have to ask for the things I want out of life came from my dad, not just straightforwardly encouraging me, but challenging me to go out and get them.
You are also an active member of Team Fox through Team Fox New York Young Professionals. What is your involvement with the group, and what kind of fundraisers and events do you produce?
The Team Fox New York YPs are a group of young professionals in New York City that raise awareness and money on behalf of The Michael J. Fox foundation. We put on two major fundraising events per year, Sunday Funday and the Foxy Fall Masquerade Ball, which is coming up in December 2016. I’m on the executive board this year in the role of Member Engagement Co-Chair, which means I work with members to organize smaller fundraisers throughout the year or organize social events for the group. This year, we also implemented a type of support group where members get together and discuss their connection to PD in an intimate setting. My co-chair and I aim to have at least one of these events or fundraisers every month.
Have you found that being open about your Dad's journey with Parkinson's has connected you with more people in the Parkinson's community? Was it difficult for you to open up about this part of your life?
Yes and yes. Like I mentioned, my Dad was diagnosed with PD just over ten years ago and I only really started to get involved in the Parkinson’s community last year. It’s definitely been a process of acceptance and adaptation for my whole family and the ability to openly discuss my Dad’s journey developed slowly over the years. The second I decided to start Squar’d Away, however, there was a huge shift as I went from rarely discussing PD to literally saying the words every single day. This, combined with all of the amazing people that I’ve met in the Parkinson’s community, has shifted my understanding of the disease as well as my articulation of it. I’m able to openly say how lucky we are that, all things considered; my dad is doing well and how proud of him I am for striving to live his best life every day.
What's next for Squar'd Away? Do you have any new products coming up?
Absolutely! There will be some exciting new colors hitting the website on time for the holiday season and stay tuned for some cool artist collaborations.
Thank you so much to Sara for taking the time to tell us about Squar'd Away, and her personal connection to Parkinson's, Team Fox and The Michael J. Fox Foundation.
Photo Shoot for a Cure is a series of fundraising photo shoots benefiting The Michael J. Fox Foundation, produced by photographer Diana Levine and inspired by her Mom, who was diagnosed with PD 11 years ago. We have shoots coming up in the Boston area and New York City. To stay in the loop, please join our mailing list, and follow us on Facebook and Instagram. If your company or business would like to sponsor Photo Shoot for a Cure, please visit here to learn more and sign up as a sponsor.
The first Photo Shoot for a Cure took place October 1st, 2016 at MarketStreet Lynnfield. The shoot was hosted by James Joseph Salon, with make up was provided by Soft Surroundings. Photo Shoot for a Cure benefits The Michael J. Fox Foundation for Parkinson's Research and is produced by photographer Diana Levine, in support of her Mom, who was diagnosed with Parkinson's 11 years ago.
As the daughter of a Mom living with Parkinson's disease, I'm always eager to learn more about PD treatments, up and coming research, and how to best support a loved one with Parkinson's. So, I was thrilled to have the opportunity to interview Dr. Kara Smith, a Movement Disorder Specialist at UMASS Memorial Medical Center Parkinson's Disease and Movement Disorders Clinic in Worcester, MA. She speaks about why she decided to specialize in Parkinson's, some exciting new treatments, and why she's hopeful that Parkinson's disease will be conquered within her career.
How did you decide to become a Movement Disorder Specialist specializing in Parkinson's disease?
PD is a fascinating and complex condition that continually inspires my intellectual curiosity. It involves such a broad range of symptoms and is extremely variable between individual patients. To me, this makes research and treatment of PD both challenging and rewarding. Second, there are many effective treatments that I am able to offer to my patients. We can typically manage symptoms well and keep patients functioning almost normally for years, which is not the case in many neurologic conditions. Our scientific understanding of PD has grown tremendously since I began my training and I have high hopes for new breakthroughs in the near future. Finally, as a Movement Disorders Specialist, I have the opportunity to build relationships with patients and their families over many years. I find it highly rewarding to help patients through their journey with PD.
What is your day-to-day like? Do you mostly see patients in your office?
I split my time between patient care and clinical research. I view my office as a laboratory and am always listening to my patients for new research ideas. I believe that education and engagement in research empower patients and leads to better outcomes.
What is your main research focus?
My main research interest is cognition in PD. PD can cause a spectrum of cognitive symptoms, from subtle changes early in the disease course to the development of dementia in some patients. Currently we do not have good ways to predict or prevent future cognitive decline. My goal is to find new tools to diagnose, monitor and treat cognitive changes in PD. I am currently conducting a study of cognitive training, or “brain games” through a website, to improve mild cognitive symptoms such as word finding difficulty in PD. I am also studying the use of speech and voice to monitor cognitive function in daily life.
Are there any new treatments available or coming soon?
There are many new and exciting treatments on the horizon. In the pipeline, there are new formulations of levodopa, drugs for motor fluctuations, dyskinesias and cognition. There are also new deep brain stimulation devices being used in research settings aimed at optimizing benefit and reducing side effects. In the past year or so, newly available medications include a long acting formulation of carbidopa/levodopa called Rytary, and a medication for psychosis and hallucinations called Nuplazid.
Outside of medicine and surgical options, do you recommend any other treatments to your patients? (For example, exercise or nutrition therapy?)
Absolutely! Exercise is the only treatment currently known to slow down the progression of PD. Studies have shown that moderate intensity aerobic exercise improves motor function, mood, and cognition in PD. We also know that exercise prevents the loss of dopamine neurons in animals and we think this is true in humans as well. Many types of exercise can achieve this goal, from brisk walking, swimming and stationary bike, to classes for PD like dance and boxing.
Physical, occupational and speech therapy are also a mainstay of PD treatment. Physical therapy can be extremely helpful at any point in the disease course from “pre-habilitation” to train your body to fight future PD symptoms, to fall prevention in later stages. The BIG/LOUD program is an intensive program for PD that increases amplitude of movements and voice. This program has been validated in studies and many patients find it greatly beneficial.
Are there any new medical treatments on the horizon that you are excited for?
One of the most exciting new avenues in my opinion is immunotherapy and vaccination directed against alpha-synuclein. We know that alpha-synuclein misfolding leads to the dopamine neuron dysfunction that causes PD, and that this process spreads gradually through the nervous system. Vaccination has the potential to halt this spread early on, and stop the disease in its tracks. Although this research is still in early phases, it gives me great hope that we will conquer this disease during my career.
Are there any stories or patients that you've treated that stand out to you?
I have had the honor of treating many inspirational and exceptional patients. Diagnosing PD can come with mixed emotions for both the patient and myself. On the one hand, I feel positive about my ability to put a name to the symptoms the patient has been experiencing, and to reassure them that current treatments can help drastically. I have been able to help patients go from uncertainty and denial to embracing the diagnosis in an optimistic light. Several of my patients have given back enormously to the PD community, through providing free counseling services to other patients, leading support groups, fundraising, and utilizing their professional skills to contribute to research.
How can family members and friends best support their loved one's with Parkinson's?
Being respectful and listening with an open mind is a good way to start. People vary a lot in how much they want to talk about their symptoms and their diagnosis. Understandably, PD patients are concerned about what the future holds, and have great difficulty talking about this to family and friends. I encourage my patients to voice these thoughts, ask for help when they need it, and realize that there will be good days and bad days. There is also a difficult balance between wanting to be independent and knowing when to ask for help. Caregivers often also suffer from stress and burnout, and there are resources available through local and national associations that can help provide relief. Caregivers need to take care of their physical and mental health in order to best care for their loved ones with PD.
Are there any programs or organizations you point your patients to, who want to get involved with Parkinson's research or advocacy?
Patients who are interested in participating in clinical trials may search www.clinicaltrials.gov for all Parkinson’s studies registered in the US. The Michael J Fox Foundation (MJFF) has a great tool to find a trial that applies to you. Patients should also ask their neurologists about any research studies in their area.
There are many excellent programs for patients and families to get involved in advocacy in its many forms.
The Parkinson’s Action Network, which recently merged with The Michael J Fox Foundation (MJFF), is a voice for PD patients in public policy at the state and federal level. You can visit the new Public Policy section on the MJFF website to learn more and contact your representatives.
The Parkinson Disease Foundation’s Patient Advocates in Research program trains patients to become active in working with researchers, enhancing clinical trial development and recruitment, and making sure the needs of the PD community are being met by current research.
Can you tell us more about the UMass Parkinson's center?
The UMass Movement Disorders and Parkinson’s Disease Center is located at UMass Memorial Medical Center in Worcester, MA. We are a comprehensive center providing a patient-centered approach to care. We offer medical management with the latest therapies, deep brain stimulator evaluations and programming, and botulinum toxin (“Botox”) injections for a range of Movement Disorders.
Thank you so much to Dr. Kara Smith for taking the time to talk about her life as a Parkinson's doctor, and her thoughts on upcoming treatments and research.
Hearing that Dr. Smith is hopeful that the vaccination directed against alpha-synuclein could lead to a cure for Parkinson's in our lifetime motivates me even further to put my full passion and effort into Photo Shoot for a Cure. Every shoot we book brings us closer to finding better treatments, and we hope, closer to finding a cure. Please like us on Facebook and join our mailing list to stay up to date with upcoming shoots.
If you'd like to donate to our team, please visit Team Fox Photo Shoot for a Cure.
How a South Shore physical therapist and boxing coach is using Rock Steady Boxing to improve the lives of people with Parkinson's.
As the daughter of an amazing Mom living with Parkinson's disease, I've heard about the incredible health benefits people are finding through Rock Steady boxing. Brett Miller, who runs Rock Steady South Shore at The Workout Club in in Marshfield, MA, was kind enough to share his journey of launching his own Rock Steady program, and witnessing firsthand the ways that it's improving the lives of his boxers. If you're interested in signing up, please visit their website, drop them an email, or call the center at 508-922-5647.
Diana: What is Rock Steady?
Brett: Rock Steady Boxing is a first of-its-kind, non-contact boxing-inspired fitness curriculum designed to dramatically improve the ability of people suffering with Parkinson's disease. It was founded in 2006 by former Marion County Prosecutor Scott Newman who was diagnosed with Parkinson's disease at age 40. He experienced a rapid progression of symptoms including tremors, rigidity, and a loss of some functions. A friend taught him how to box, and he quickly saw his symptoms decrease. After only a few weeks, he stretched out his arms and said, "Look, I'm Rock Steady."
Rock Steady Boxing helps people to maintain their physical independence, improve their quality of life, and restores confidence and dignity while we wait for a cure. Our mission is to empower people with Parkinson's to "fight back" and to serve those affected with HELP: Hope, Exercise, Learning, and Pain Relief. We want our boxers to feel in control of their future again. The medical studies have proven that anyone, at any level of Parkinson's, can actually lessen their symptoms and lead to a happier, healthier life.
How did you get involved with the Rock Steady Program?
I got involved in Rock Steady Boxing after a few people, who knew I was a physical therapist and involved in professional boxing as a conditioning coach, had seen a clip on 60 Minutes about the program. After watching it, I knew it was the perfect combination of my careers and something that was calling me to get involved. I was in need of some new jazz in my life and this was serendipitous in its timing. I knew I could give these people hope, if nothing else.
What is a typical class like?
A typical class for Rock Steady boxers is an hour and a half. It consists of a warm up, multiple rounds of high intensity intervals, and a cool down. Rock Steady breaks down their classes in 4 levels. Each boxer goes through an assessment on their first day. Level 1 is the highest functioning, based on the initial assessment. Classes are typically modified based on the level. Classes are different every week and I tend to pick themes corresponding to balance, endurance, footwork, and punching drills, for example. Boxing equipment such as medicine balls, heavy bags, speed bags, mitt work, and double end bags are all incorporated on some level in every class.
We are always very social and funny in class, making camaraderie and fellowship our focus. All of the Rock Steady coaches in the world have a training forum in which we share ideas about our class creativity and success stories. All of the classes worldwide follow the boxing conditioning skills for optimal agility, speed, muscular endurance, accuracy, hand eye coordination, footwork, and overall endurance. Amazing things come out of our classes in all aspects of these people's lives and their family member's lives as well. It's something that can't be touched, but only experienced if present in a class.
What is the certification process like to run a Rock Steady program?
To be an affiliate of the Rock Steady program, there is a certification course in which you travel to the Indianapolis training facility for three days, and learn the method and are tested. It is two long days of training in the classroom and training facility with interaction during classes being held. The last day is full engagement in a class with hands on the actual boxers. Rock Steady Training Facility has a huge client base and all levels of PD are experienced from younger, fit, employed professionals to wheelchair bound folks who can barely speak. After graduation, Rock Steady sends you on your way home with everything you need to start your own program. There is an annual fee to affiliate, but very worth the cost, because we have a constant support from Indianapolis as well as a CMS (Content Management System) that includes video as well as printed documentation for anything you would need for starting the program to class ideas.
How do you handle clients who have more than one health issue? For example, Parkinson's disease and a hip replacement?
When someone comes to Rock Steady South Shore for the first time, there is a series of tests we do to establish the correct level class for that boxer. There is also a medical history form, a physician release form, and a psycho-social questionnare called the PDQ-39. This gives me a whole lot of information about the evolution of their PD process, as well as any other cardiac, orthopedic, or other health issues to be concerned about. I feel like we have an edge with our class modification and development because I have been a physical therapist for 22 years and have a lot of experience with this population, as well as the medical equipment side of the fence.
We currently have a gentleman who has a really difficult time putting on his glove on one side due to a contracture of his fingers. I have made a brace for his hand to be worn at night and modified a boxing glove that can accommodate the issues, so he can transition into his gloves with the other boxers in a timely manner. We do whatever it takes to make the program seamless for all our boxers regardless of past medical history, and we have the skills to do that effectively.
When you started the Rock Steady program, how many people were enrolled? How many are enrolled now? Did you think it would be this popular?
When we started our program four weeks ago, we had two participants. We have added about two or three new people every week, and there are multiple people coming in the next week to get started. Currently, we have 12 boxers who are already making amazing strides in all aspects of their lives. We expect to have about 40 participants by the winter season.
Are there any particular stories or clients that stand out to you?
Every person in our program has been a success story since day one. Even myself and the cornermen have been blown away by the results of Rock Steady South Shore. I receive daily notes and emails from family members who don't even know me, to thank me for my compassion and work with their boxers. I have daughters who have said they haven't seen their dad smile like this in two years. I have neurologists blown away by the balance and posture improvements of their patients after two weeks of boxing. I have boxers jumping rope, bouncing on trampolines and throwing heavy bag punches like Ali. The list goes on and on, and I couldn't be more humbled to have had the grace of God put me in these shoes to fight back like this.
Will you be attending the World Parkinson Congress in Portland this November 2016?
I will not be attending the World Parkinson Congress this month for the simple reason that now I am engaged with these incredible, hard-working, never-quitting, stand-up boxers -- I can't leave them for a week. I feel like Superman and it's now my duty and my turn to be extra accountable to give them what they give me on a weekly basis. There will be a large contingent of Rock Steady coaches in Portland who I have no doubt will represent us very well.
How can people learn more about your program, and how do they sign up?
Please feel free to come by our location to watch a class, learn about volunteer opportunities, or join our wonderful group of boxers. We are a full fitness center with weights, nautilus machines, yoga, aerobics classes, and a great group of energetic members who strongly support our Rock Steady mission. We have multiple packages based on what you are looking to achieve. We also offer a beginners package to include your gloves, wraps, assessment, and a full gym membership. Family members can join the fitness center as well, so they can follow their own fitness journey while their loved ones fight back.
We have great news: early next year, we are expanding into the space next door. We will be adding a full boxing ring, more boxing equipment, and more space allocated to our program as we expect to have a lot of people with Parkinson's disease fighting back -- they know that in this corner of Rock Steady South Shore, there is HOPE.
Thank you so much to Brett Miller for taking the time to answer our questions about his Rock Steady program in Marshfield, MA. Stay tuned to Photo Shoot for a Cure and like our Facebook page for more interviews with incredible people like Brett, who are involved in life-changing ways with the Parkinson's community.
Photo Shoot for a cure is a series of photo shoots benefiting The Michael J. Fox Foundation for Parkinson's Research. Produced by photographer Diana Levine, in support of her Mom, who has been living with Parkinson's disease for over 10 years, 100% of shoot fees go directly to Parkinson's research.
If you can't make the shoot, but would like to support our team, please visit our Team Fox page to make a donation. Every dollar matters on our mission to fund a cure for Parkinson's.
Many years before I was shooting Alicia Keys, Kim Kardashian, and Usher, and shooting ad campaigns for brands like Converse and Bumble and bumble, I was a 20 year old college student, studying photography and wondering if I could ever make it as a photographer.
It was at that time that I went home to visit my Mom one night, and she sat me down to tell me the words that would forever change our lives: At 47 years old, she had been diagnosed with Parkinson's disease. It felt as if my world suddenly stopped spinning.
At first, I was so devastated that I refused to leave my Mom's side. I mean literally. If she wanted to go swimming, I would put on my swimsuit and go in the water with her. I have tears in my eyes as I write these words because I so clearly remember not even wanting to leave her side to go back to school.
I felt that I could never leave her side again. I wanted to protect her, and to spend as much time together as possible. I didn't know what the future held. I didn't understand the progression of Parkinson's disease. I was in a brand new world that I knew nothing about.
At the same time, I was a 20 year old with hopes and dreams for my own life and career. I wanted to be there for my Mom, but I also knew in my heart that I wanted to follow my dream of becoming a photographer. It put me into an internal conflict that I would struggle with again and again for the next 10 years:
How can I follow my own dreams, when I need to be there for my Mom?
I knew that if I wanted to truly pursue my dreams of being a photographer, I needed to move to New York City. My heart was filled with anxiety as I made the decision to move away from Massachusetts. I struggled with the idea that building my career in New York was selfish.
If my Mom had asked me to stay, I would have stayed. But, she was adamant that I follow my path and told me that I needed to go to New York.
I remember one New Year's Eve, watching the fireworks, hugging my Mom, and crying because I knew in my heart that it might be the last New Year's Eve that I would be home with her. She comforted me and told me that the thing that would make her happiest was me fulfilling my dreams.
And so, after working for a year working as the Designer at Boston Magazine, I left my job and moved to Brooklyn, NY with my boyfriend, and now husband, Matt. I knew almost no one. I had no clients. I had no work.
It was because of my Mom's Parkinson's -- because of this vague deadline I had in my heart that at some point in time, I would need to leave New York and move back to my Mom -- I had no time to waste.
I was building my career from scratch, and I didn't have time to waste drinking or partying. I didn't have time to waste by lacking confidence, or not challenging myself to find opportunities to advance my career. I didn't take days off, I didn't take vacations, and I didn't stop when I was rejected or ignored, even if my ego was hurt.
It's because of my Mom's Parkinson's that I forced myself to do things that made me nervous and uncomfortable. I reached out to people who had never heard of me. I did shoots for anyone and everyone who would hire me, even if it was free. I did spec shoots, even if it required my time and money, in hopes of the photos reaching someone who would want to hire me.
If I was going to sacrifice my time with my Mom, it had to mean something. It had to be worth it.
And it worked. With a mixture of sweat, tears, luck, and some life-changing people who saw my potential and became my supporters and mentors, I built my career from the ground up to shooting top celebrities, musicians and world figures, and shooting ad campaigns for world-renowned brands. I saw my photos displayed larger-than-life in Times Square. I frequently dropped by Barnes & Noble to pick up the latest copy of my favorite magazines that had published my photo spreads. I worked with some of the most incredible photo editors, designers, producers and publicists in the industry. I can truly say that I achieved my dreams.
I don't know if I would have achieved my goals if I didn't have that underlying pressure that I had to make it, and I had to make it fast. Sometimes it's the hardest things in life that push you to do things you never dreamed possible. Looking back on my time in New York, I feel at peace in my heart that it was worth it.
Building my career as a photographer was not only important to me, but I knew that it filled my Mom's heart with pride and happiness that she raised two girls who were confident and able to find their paths to happiness.
I did what I could to be there for my Mom from afar. Throughout my 8 years in New York, I traveled back to Boston every two or three weeks, and tried to help in any small way that I could. I called her every night before I went to sleep, to make sure she was feeling okay. We arranged frequent trips for her to come to New York, and we attended the annual Parkinson's Unity Walk and The Mark Morris Dance for PD programs at Julliard.
I worked with The Webutante Ball to raise $50,000 for The Michael J. Fox Foundation for Parkinson's Research, thanks in part to a matching donation from Google co-founder Sergey Brin. My Mom came to New York for the photo shoot, and it was a night I'll never forget. However, after 8 years, I knew I wanted to be there for my Mom in a more day-to-day way.
LEAVING NEW YORK
I knew it was time to come home. I had gotten my work to a point where I had established my career, and it became clear that it was time move back to Massachusetts.
At the time, it felt impossible. I had worked too hard to build my career in New York. How could I leave my clients, my friends, my life? My Mom was coming up on 10 years living with Parkinson's disease. She was facing more challenges in her life, and there had been a few incidents that made me think "My Mom really needed me last night, and I wasn't able to be there for her."
I also had a toddler, and would soon be pregnant with my second child. I knew I wanted my children to grow up having a close relationship with their Bubby.
And so, along with the most supportive husband in history, whose life and career as a cinematographer was also firmly based in New York, we left our life in Manhattan and moved home to my Mom's tiny ocean-side town in Massachusetts.
It was culture shock. I didn't understand how people could actually get in their cars every single time they wanted to go somewhere. I couldn't understand the concept of buying more than one or two day's worth of produce at the grocery. I couldn't believe I had to leave my house to have a play date. I missed my clients, my work and my life in New York.
But my husband and I both knew in our hearts that this was the right move. It wasn't easy at first. I was pregnant, taking care of a 2 year old, and Matt was traveling back to New York for work 75% of the time. But like everything we've done in our lives, we had a plan, and we were going to make it work.
I am so beyond grateful to say that it did. I have been blessed to find my place in Boston and have found myself working on shoots that I absolutely love. I'm working with clients and subjects that inspire me, and make me so excited to back in this beautiful city. Matt founded a software company for the film industry and is able to run the business from home.
I've fallen in love with Boston all over again, and am exploring the city through my children's eyes, as we take adventures to the Boston Children's Museum, The Museum of Science, and the New England Aquarium.
I've found myself in a place where I feel fulfilled through my career, while also being there for my Mom. Some days, I'm on set shooting for magazines, universities or brands. Other days, I'm taking my Mom swimming, which is essential to her wellbeing. There are days when I finish up a production call with a client, as I'm heading out the door to do errands for my Mom when she isn't feeling up to driving.
And in December of last year, I was there when she fell and broke her right hip. I was there to open the doors for the ambulances and to comfort and support her along with my sister as she suddenly found herself in the challenging journey of being a Parkinson's patient going through emergency situations and surgeries. I was able to be there day-to-date during her months-long recovery.
I'm a person that is inspired by the idea of a challenge. But, as much as I can help my Mom with her day-to-day life, I can't stop the progression of her disease. It's because of this deep desire to want to make a real difference for people living with Parkinson's that my sister and I have started producing Photo Shoot for a Cure.
I'm combining my work as a photographer with our passion for fundraising for Parkinson's research. We are producing a series of photo shoots around the Greater Boston area, where 100% of shoot fees go directly to The Michael J. Fox Foundation for Parkinson's Research.
Our first shoot is taking place October 1, 2016 in Wakefield, MA. We are currently planning our next shoot for November 2016 in the South Shore area. And, of course, I'm already daydreaming about bringing Photo Shoot for a Cure to downtown Boston and New York, and producing shoots specifically for band photos, advertising work, and corporations.
If you'd like to support us on our mission to fund a cure for Parkinson's, please like us on Facebook, follow us on Instagram, sign up for our newsletter, and share, share, share our flyer and website with your friends.
If you can't make the fundraiser, but would like to support us on our mission, please click here to donate to our team. 100% of your donation to Team Fox goes straight to Parkinson's research, and we appreciate your generosity from the bottom of our hearts.
We're currently looking for corporate sponsorships for Photo Shoot for a Cure. If you run a business who would like to support our mission, please email firstname.lastname@example.org to receive our Sponsorship Options, which range from $1 to $5000.
Parkinson's disease affects so many incredible people around the world. Let's work together to fund a cure.