The Parkinson Alliance is proud to sponsor the Parkinson’s Dance Program at Capital Health Medical Center–Hopewell in Pennington, New Jersey. Join in every Thursday 1:30–2:30 pm through June 15, 2017 in the 4th floor conference room, One Capital Way, Pennington, NJ. This dance class utilizes specifically designed creative movement and choreography which will help participants develop more freedom of movement, with a sense of grace, rhythm, and ease. All classes incorporate live music and is lead by professional dance instructors trained through the MARK MORRIS DANCE GROUP/DANCE FOR PD PROGRAM in Brooklyn, NY. This class can accommodate those who walk independently, need a cane, or need a wheelchair. Caregivers are encouraged to participate. While there is a suggested donation of $30 for the entire program, all are welcome.
On the third Wednesday of every month between 2–4 pm is a Parkinson’s Support Group. The first hour is focused on educating and empowering patients, their families, and caregivers through talks about PD. The second hour the group splits. Patients can share and learn from one another in one private session while family members and caregivers can do the same in a nearby room. Meetings are held in the NJ PURE Conference Rooms B and C at Capital Health Medical Center–Hopewell. Register by calling 609-537-7157 or register online at capital health.org/events. Complimentary valet parking is available at the main entrance, and refreshments are provided.
Recently we came across an article entitled, Israeli healer treats Parkinson’s through talk and dance. It’s the story of how Michael Wiese, a publisher who was diagnosed with Parkinson’s, came to meet Alex Kerten, the founder and director of the Gyro-Kinetics Center in Herzliya, Israel. Wiese was so impressed with how Kerten helped him (along with thousands of others with Parkinson’s) that he told Kerten he would like to publish a book describing his technique. Wiese introduced Kerten to David Brinn, the managing editor of The Jerusalem Post, who became the book’s co-author, and Goodbye Parkinson’s, Hello Life was born.
Goodbye Parkinson’s, Hello Life is a 203 page book with the goal of reducing Parkinson’s symptoms by lowering anxiety through mindfulness and creating motion in the body through music, movement, and rhythm. Kerten explains that anxiety is often rooted long before a diagnose of Parkinson’s, and he addresses how to recognize it and change the negative scripts that might be playing in your mind. “Our biochemistry and our psychology start to change as we learn to control our way of thinking.” Movement is through a series of exercises that focus on breathing, movement, self-massage, conducting, and improvised dancing. By synchronizing your thoughts and actions, you can become a “Parkinson’s warrior” — a person who is unafraid to change their story and feel good again.
Yes, it takes work to both incorporate mindfulness and exercise into your day. Yet the benefits are clearly there. And as he points out, the book is not a replacement to your movement disorder specialist or medications. Instead it is a complement to them. Kerten recognizes that people with Parkinson’s have good days and bad days. He suggests that you use the book as a guide or to “take from it whatever you need to help you cope and overcome whatever difficulties you are facing on a particular day.” He concludes with “Believe in your commitment, visualize it, dream it, expect it, and bring more and more of what you want into your life.” Become a Parkinson’s warrior.
– Margaret Tuchman and Gloria Hansen, The Parkinson Alliance
In our last post, guest blogger JohnCornicello talked about exercising at the School of Acrobatics and New Circus Arts to help combat his Parkinson’s and get in better shape. While not as exotic as a circus school, in early March I added another type of exercise to my program. It’s called “Redcord” and is taught at Activcore in Princeton, NJ (although they have other facilities in central NJ and in Denver, Co). Redcord uses a patented “bungee assisted” system of cords and slings that fully supports my weight throughout each of the movements my therapist directs me to do. After clearing it with my movement disorder specialist, I decided to give it a try.
When I first arrived, a physical therapist evaluated me and found I have problems with mobility (walking and moving around), pain in my left shoulder (unrelated to my PD), decreased standing tolerance, generalized body weakness, and I continue to use my walker. However, my rehab potential is classified as “good,” and I started the program. My plan is attending three times a week, and I’ve thus far made it through 15 visits.
This system allows me to perform many of the same suspension exercises as an athlete. Granted, the amount of bungee assistance will vary, but it’s still exciting for me to do this work.
Marge and her trainer, Tyler.
Marge developing her core muscles
It is especially important for people with Parkinson’s to exercise, and this training is very exciting for me. We will be updating Marge’s progress on this training. Check back for updates.
Meanwhile, what type of new exercises are you incorporating into your routine? We’d love to hear from you!
– Margaret Tuchman and Gloria Hansen, The Parkinson Alliance
by guest blogger John Cornicello, a Seattle-based portrait photographer Cornicello Photography and a person with Parkinson’s
It all started a few years ago. I was working for a well-known software company. My job had me at a computer, typing, most of the day. I started noticing some “issues.” My left hand was becoming less accurate — DOuble-caps, repeating letters, things like that. I also noticed that my left arm was pulling in towards my body when at rest and it didn’t move/swing as I walked. My piano playing had been actually getting better for a few years, then all of a sudden it started a dive, too.
My first thought was that I suffered some sort of mild stroke. I got a referral to a neurologist, had an MRI, and things looked good. He had me do some basic movements. Then, as he observed me, he suggested that I might have Parkinson’s. I had no tremors. Just the stiff left arm and some cogwheel type of movement in my left wrist.
I had already been taking Ropinerole for restless leg, so we didn’t change anything there. My diet has never been that great, so my wife and I tried to go radical (for me) for a few months with no sugar, carbs, or gluten. I did lose about 20 lbs very quickly. However, I was starting to get some tremors in my left hand. After three months, I went back to dairy and gluten but have managed to keep away from sugared soft drinks.
Concurrently with all of this I had been photographing for a circus school here in Seattle. SANCA is the School of Acrobatics and New Circus Arts, one of the largest such schools in the world. I became friends with the owners and at the end of a benefit show in February 2015 I casually mentioned that I had Parkinson’s and asked Jo Montgomery if she had ever worked with Parkinson’s patients. She said she had not, but that I should stop in at the school next Monday. And I’ve been there just about every Monday, since.
I was 57 and pretty sedentary when I started this. Jo started me up slowly with stretching exercises. And then gradually started asking me to try more activities. My initial reaction to most of these has been, “You want me to do what? OK, I can bounce on a trampoline and do some jumping jack type of movements, But now you want me to do a seat drop? And then come back to a standing position?” I dreaded the trampoline for about 2 weeks.
Then it clicked and has become a favorite part of our routine. Next came walking on a balance beam. About 3″ wide and 6″ off the ground. More difficult than expected, but not so bad. I could do that one. Until one day she suggested a tight wire instead. A steel cable about 1/2″ or so wide. Barefoot, Jo would be holding one wrist as I walked back and forth across the wire. I never measured it, but I’m guessing it is a 12 foot distance. Amazingly I did it. And I enjoyed it.
All of this has built good core strength and improved my confidence.
So next came juggling. I’ve never been able to juggle. Maybe it is from lack of discipline and practice.
But I try. Balls, clubs, rings. On my own, I’m really bad. But I found that I can toss 2, 3, or even 5 rings with another person. I believe this routine is helping to make new brain connections that might help with Parkinson’s.
Then back to stretching. When I first started I couldn’t move my left shoulder. I would hold my left arm out to the side and grab a bar and tell it to move up/down and forward/back. And nothing would happen. I could tell my right shoulder to make all sorts of movements and it would. But the left shoulder would just sit there, completely ignoring my commands. I don’t know if is the medications (I started seeing a movement specialist in June 2015, and started Carbo/Leva in September), or all the other exercises, or a combination, but my left shoulder is finally starting to follow instructions and move around in circles when I want it to.
We also do some strength training by doing pull-ups on a trapeze bar and an exercise where I grab a bar above my head against a wall and pull my knees up to my chest 20 times.
Outside of circus school I have set up my home “triathlon” routine where I do a 30 minute routine that consists of a mile on a treadmill, then spin at 80-90 pedal rpm on a stationary bicycle for the balance of the 30 minutes. Then I take a shower.
All of this has helped me maintain a healthy and positive attitude. I consider myself lucky that my tremors are mostly mild and confined to my left hand so they don’t affect my photography. Yes, I’ve started using a tripod more often, but not all the time. I do worry that my left hand tremor might be a distraction to my subjects if my hand starts banging against my tripod. But I do explain the situation if that happens and all seems good.
This past week I found out that one of the members of SANCA’s board of directors has been diagnosed with Parkinson’s and she has joined in on the Monday class. Our first try at juggling rings with each other went remarkably well.
Some days I wonder if I should be more concerned with my Parkinson’s. But so far I have managed to maintain a very upbeat attitude. I really look forward to both the SANCA and the home workouts. And I am somewhat amazed as I learn about more and more friends and colleagues who have some sort of tremors, be they essential tremors or Parkinson’s. This makes me have hope that more people will be learning about these issues leading to more research and the possibility of cures and even prevention. In the meantime, I am now starting to think about boxing lessons with a program like Rock Steady Boxing.
Thank you, John, for sharing your story with my assistant and blogging partner, Gloria Hansen. You are very creative and we applaud your unconventional approach to exercise, which we know is the best medicine for Parkinson’s. — Margaret Tuchman, President of The Parkinson Alliance
By Margaret Tuchman, President of The Parkinson Alliance
The importance of exercise being an important part of healthy living is not a new concept in our Parkinson’s disease (PD) community. While there is research supporting the importance of exercise for individuals with PD, what is less known is the patient’s perspective.
So I had the idea for The Parkinson Alliance’s Patient Survey Program, to find out more about exercise from the “patient’s perspective,” including — factors related to attitude and knowledge about exercise and PD, types of exercises in which individuals with PD engage, perceived benefit of exercise, and perceived barriers to exercise.
The results of the survey entitled Exercise & Parkinson’s Disease With and Without DBS: A Closer Look from the Patient’s Perspective are available for download on our website at dbs4pd.org. The study included 1,500 participants with PD; 394 participants who underwent Deep Brain Stimulation (DBS) and 1,106 individuals without DBS. Results revealed that while most people with PD believe that exercise is important, barriers limit participation. Based on the data gathered, report includes general recommendations.
For me, the most important take-away from our Exercise Survey is that any type of exercise (with your doctor’s approval) isbeneficial to people with Parkinson’s.
And similar to what the study found, I also know that people living with Parkinson’s have issues that can put up barriers to exercise. For example, in addition to my limitations caused by Parkinson’s disease, I had a surgery for a frozen shoulder. After surgery I learned that my rotator cuff cannot be corrected. I am therefore at the mercy of both my PD cycles and the barometric pressure changes in the weather.
So how do I overcome the barriers?
Just about when I am ready to give up, something happens in my life that I can grab onto and motivate myself to keep going. The last two years I started to study yoga again. I found a teacher willing to work with my physical limitations and being house-bound. He taught me better breathing techniques and how to accommodate my body and do the best positions I can achieve on any given day. I can now complete six or more Sun Salutations in a row with relative ease. I do chair yoga, and the Sun Salutation is a gentle version my teacher designed for me. I am happy to share it with you below and hope it motivates you.
I hope that you give this exercise a try and let me know what you think. I also hope that you check out our survey on exercise as it conveys important practical recommendations related to exercising as it relates to Parkinson’s and overcoming barriers.