December is the time to gather with friends and family and celebrate the holiday season. At The Parkinson Alliance, this December also marks the one year passing of our beloved co-founder, Margaret. As we look back on this year, we take pride in having carried on Margaret’s goals for the Alliance.
Margaret devoted herself to educating the Parkinson’s community about anything that may improve the quality of life and to raising money to fund Parkinson’s research. These core principles remain at the heart of The Parkinson Alliance. Under the leadership of our President and CEO, Carol Walton, the Alliance continued participating in educational seminars and area events to empower the community, growing the number of participants in our patient-centered research, and working on various Team Parkinson events to raise money for research.
We also funded research grants, including a pilot study expansion study to help clarify the relationship between walking and talking and to develop new dual- and multi-task interventions to directly benefit Parkinson’s patients. We also funded a project that assesses the degrees to which stimulation frequency parameters in deep brain stimulation affect gait. You can read more about these grants here.
In addition to the Parkinson’s Unity Walk held in April, throughout the year we held Team Parkinson events, such as Team Parkinson at the Los Angeles Marathon, Team Parkinson 5K & Fun Run at Carnegie Center, and the Food, Wine & Maybe Tuscany.
John Ball and his amazing wife, Edna, of Team Parkinson were featured in the LA Marathon’s “35 Reasons” video series. We encourage you to watch this very inspiring video about his commitment to the Parkinson’s community and why he runs.
With your support, we have accomplished so much in 2019. We are proud to continue to honor Margaret’s legacy and push forward on the road she started some two decades ago. We wish you, your family, and friends all the best this holiday season.
On Tuesday, October 24th, The Parkinson Alliance held its 3rd annual Food, Wine & Maybe Tuscany event in Lawrenceville, New Jersey. While enjoying an evening of food and wine, attendees were also treated to an inspiring talk by guest speaker, Bret Parker.
Bret is a 51 year old attorney who is currently the Executive Director of the New York City Bar Association. He was diagnosed with Parkinson’s at age 38. Initially he kept the diagnosis, which he thought to be some sort of carpal tunnel issue, to himself. He wrestled within. On the one hand, he didn’t want potential pity or prejudice. On the other, he wanted to be open with friends and family and wanted to get involved with raising awareness and money for a cure. With his symptoms not impacting his day-to-day life, it seemed there was no need to worry anyone. Silence was best. Each year, as he hid symptoms such as hand and leg tremors, stiffness, and slowness in movement, he contemplated when he would break his silence. Then, his young son asked “Daddy, why does your hand shake?” With tears, he revealed his condition to a close few.
In 2012, five years after his diagnosis, a good friend who knew of Bret’s condition was running 50 miles to raise money for 10 charities. His friend asked Bret to run a 5-mile section of the event with him to raise money for the Michael J. Fox Foundation for Parkinson’s Research. He realized his friend’s decision to raise money inadvertently gave him the needed push to finally reveal his condition. He broke his silence by writing a blog post for Forbes — his “coming out” of sorts — and asking those in his world to read it. “As I contemplated how I would finally reveal my condition, I realized that my secrecy was not protecting me at all. Rather, it was my way of denying that I have this chronic disease and controlling the one thing I could control – how many people know I have Parkinson’s. … By keeping a secret I have accomplished nothing. Not only that, I have squandered opportunity: opportunity to deepen relationships with friends and family; opportunity to rally support for Parkinson’s research; opportunity to confront my fears and educate people; and opportunity to help others like me who have been affected by this disease or by other diseases that they feel they must endure in silence.”
Since that time, Bret has participated in one event per year to raise awareness and money for Parkinson’s research. To date, he has raised over $600,000! He did marathons, a triathlon — quite impressive considering water terrifies him, a mountain climb, and raised some $50,000 during a sky dive. Then, after reading about a British school teacher, Ted Jackson, completing The World Marathon Challenge, Bret decided if Ted could do it, Bret could do it.
Early 2018, Bret flew to Cape Town, South Africa to begin his journey in the World Marathon Challenge. The World Marathon Challenge is billed as a “logistical and physical challenge to run seven marathons on seven continents in seven days.” In other words, an extremely difficult event for anyone, let alone a 49 year old man with Parkinson’s. Competitors are scheduled to run the standard 26.2 mile distance in Antarctica, Africa, Australia, Asia, Europe, South America and North America within 168 hours, or seven days. The event began at the first marathon location in Antarctica. From there he returned to Cape Town (Africa) to do his next marathon, then Perth (Australia), Dubai (Asia), Lisbon (Europe), Cartagena (South America), and finally Miami (North America). Listening to Bret, the audience shared laughs and tears as he described his highs and lows. We learned his marathon in Antarctica was one of his best, finishing in 6 hours and change despite dropping his bag of pills and his iPhone not playing music after the temperature hit 20 degrees F. Through tears, we also heard about how when in Lisbon, Bret could just about finish due to severe blisters on his left foot. He told us Ted Jackson, the very school teacher that inspired him to join the Challenge, walked with Bret for the last four miles of that marathon. “We called ourselves Team Hold the Plane.” He talked about a t-shirt he once spotted that said “Do Epic Sh*t.” That phrase resonated with him, and he decided one either makes the decision to do epic things or not. But he also acknowledged that for people with Parkinson’s, just getting out of bed, fighting through depression, and taking the next step is epic. “Take it day by day,” he encouraged, “Be epic.”
We were honored and inspired by Bret’s story and thank him for being our guest speaker at this year’s event. We also thank everyone who attended and supported the 2019 Food, Wine & Tuscany event and hope to see you again next year. We also invite you to listen to Bret talk about his journey in the video below.
John Ball, who was diagnosed with Parkinson’s over 30 years ago, has a favorite saying: “You can’t make a difference if you don’t show up.” This year marked the fifth time that he (and the third time for his wife, Edna) showed up and represented Team Parkinson at the World Parkinson Congress (WPC), this year held in Kyoto, Japan. The conference showcases a wide spectrum of developments affecting the Parkinson’s community.
I recently talked with Edna about their experience, starting with their 12 1/2 hour flight from Los Angeles International Airport to Osaka Kansai Airport in Japan. Edna explained, “We flew Japan Airlines on the suggestion of friends who live in Osaka. Trying to figure out how to get the correct bus tickets to get to the station closest to our friends’ home was a challenge. All the ticket machines only had Japanese instructions on them. We were lost, but luckily a helpful gentleman understood what we needed and helped us buy the right tickets. Our stay in Osaka was great and our friends from Tokyo came to see us there and also to travel with us to Kyoto.”
John and Edna arrived a day early at the The International Conference Center Kyoto, host of the 5th WPC, to help with the installation and set up of the “Soaring With Hope” for PD project. “It is the brainchild of three wonderful young onset women from our support group back in California” John and Edna were two of the many volunteers who helped display some 15,000 folded cranes, from 39 countries, suspended from traditional Asian umbrellas creating a meditation garden. Each crane carried a message of hope. The founders, Naomi Estolas, Clara Kluge and Amy Carlson, stated that in the Japanese culture, 1,000 cranes represent hope and health, which is their “tenfold wish for the Global Parkinson’s Community.” Edna said, “The display was glorious, and we were so proud of these ladies and all the work they did, and so honored to be able to help.”
Soaring With Hope for PD
“The Opening Ceremonies in the evening were wonderful and included song, dance and Taiko drums. Very dramatic! The keynote speaker was Lyndsey Isaacs, widow of the late, great Tom Isaacs, who was a global force for Parkinson’s disease. Also, each morning there were special awards given to dedicated people who have contributed for years to the well-being of the Parkinson’s community. Their stories and speeches were so inspirational.
On Wednesday all the lecture sessions and so many other activities started early in the morning and went until 6:30pm. The lectures were divided by levels of scientific detail and depth, so that John could choose the more complicated topics and I could choose those I might understand more easily. I also went to a couple of care partner sessions, which to be honest, I could have led myself! Maybe next time I’ll ask to be a presenter! We learned a lot about the science of PD, alpha-synuclein, the prospects for personalized medicine in PD, nutrition, falls, the gut, medication, new treatments and procedures, and more. I even got a massage one day! There was art, the beautiful crane installation, movies, ping pong, dance, boxing, Taiko drumming, and more. John had his book on display in the Book Nook, and had time scheduled there to speak with people and answer questions. Several people ordered the book, so that was rewarding.
We saw many old friends from all around the world, and we made many new friends from around the world as well—from Australia, Scotland, and even as far away as Nepal!
And as with each Congress, there was much anticipation on the last evening as we waited to hear where the 6th Congress would be held. We were not all disappointed to hear that in 2022 we’ll be heading to Barcelona, Spain! We hope to see many old friends there and make new ones too. We hope many of you who read this will join us for an exceptional experience of community, learning, and most of all, hope.”
We thank Edna and John for not only representing Team Parkinson in Kyoto but for continually showing up and making a difference in the PD community.
By now the readers of this blog are aware that our beloved co-Founder, Margaret Tuchman, died this past December 2018. It was always her mission to give the people in the Parkinson’s community all the tools possible to make their quality of life as good as possible.
For many years I had the honor of working with Marge on a variety of projects, including writing this blog. I am very pleased that I, along with The Parkinson Alliance, will continue writing posts and sharing with the community the very things that would interest and excite Marge.
In the later years when Marge spent most of her time in her office, which had a huge picture window that overlooked a gorgeous garden that fronted a large lake, I’d read from our favorite websites. One treasured site was brainpickings.org. It’s run by Maria Popova, and Maria was on the top of our list of people that we’d imagine one day having over for tea and conversation. Just recently as I was pursuing articles on that site, I came across a post that I read to Marge called “Simone de Beauvoir on How Chance and Choice Converge to Make Us Who We Are.” I smiled remembering how much we enjoyed the line, “To be alive is to marvel — at least occasionally … at the Rube Goldberg machine of chance and choice that makes us who we are as we half-stride, half-stumble down the improbable path that lead us back to ourselves.” Yes, we did look up and learn from Wikipedia that a Rube Goldberg machine is a machine intentionally designed to perform a simple task in an indirect and overly complicated fashion. My simple task of reading to her often became complicated by our bouts of laughter and side journeys of commentary, questions, clicking around to find answers, and making more discoveries. I always admired that laughter and discovery, despite the growing toll of her Parkinson’s, were always Marge’s primary choice.
That article did allow us time to reflect on our lives, the choices we made, and the circuitous routes we each took that resulted in our paths eventually crossing and merging into a close bond. Margaret took a chance by diving directly into the Parkinson’s community and making roads where there were none, and she made the choice of giving it her all. I took a chance by answering an ad I saw long ago only because a friend was late to lunch. That chance later resulted in my choice of working with Marge, a time I will always treasure. I marvel that she never complained about her Parkinson’s or what it continued to take from her. Instead she used it as a focal point to shine light on — light on research, on education, and on an ultimate cure. While Marge did not live long enough to see that a cure, we can take tremendous pride in knowing we have the choice of blazing that road until there is one.
Our lives are about chance and choice. Marge’s memory reminds us to take a chance and make the choice to laugh, to discover, and to carry on her mission. The Parkinson Alliance and I hope you join us.
We recently came across this Ted Talk on joy, and it seemed a perfect supplement to our post on happiness. It’s by Ingrid Fetell, who states in part, “Each moment of joy is small, but over time, they add up to more than the sum of their parts. … Joy isn’t some superfluous extra. It’s directly connected to our fundamental instinct for survival. On the most basic level, the drive toward joy is the drive toward life.”
Our patient-centered research report on resilience and Parkinson’s Disease focused on how the ongoing challenges of having Parkinson’s can impact your life. It defined resilience as a dynamic process whereby individuals cope with and exhibit positive behavioral adaptation to stress, challenge, and adversity. The report noted that resilience seems to be more of a personality trait and is independent of physical function in PD and does not necessarily decrease over time as the severity of the disease worsens. Going hand-in-hand with resilience is a sense of happiness. Thus, a recent article by Adam Sternberg called Read This Story and Get Happierimmediately caught our attention.
Mr. Sternberg reported that the most popular class currently being offered at Yale University by Pofessor Laurie Santos is on happiness, called Psychology and the Good Life. Like resilience, happiness does take practice. The class teaches what happiness is, why are you’re not happy, and what you can do about it.
The takeaway is simply this: We are inclined to assume that circumstances play the biggest role in our happiness, when research suggests they play the smallest role ( … this is only true if your most basic needs are met) … we grossly underestimate the extent to which changing our behaviors, rather than our circumstances, can significantly increase our well-being.
Happiness, in the end, is a mind-set to be cultivated, not a condition to be imposed.”
Luckily for us, you no longer need to be a Yale student to benefit from Professor Santo’s class. There is now a free version of this popular class called The Science of Well-Being offered on Coursera that you can take online. The class teaches not only about the psychological research and “the annoying features of the mind that lead us to think the way we do,” but on activities that increase happiness and build better habits.
We forwarded Mr. Sternberg’s article to Dr. Jeffrey Wertheimer, our chief research consultant and also is Chief of Neuropsychology Services at Cedars-Sinai Medical Center in LA, for his opinion on it. He replied saying it’s a topic of great interest to him. He added:
I integrate some of the content into the Growing Resilience and CouragE (GRACE) curriculum I facilitate. There is definitely a trend in contemporary “l, psychology” highlighting research on happiness. U Penn is the home of Dr. Martin Seligman, one of the contemporary father figure of positive psychology and the one who coined the term Authentic Happiness (the title of one of his books).
Dr. Seligman is also the author of The Hope Circuit, which is featured on the The University of Pennsylvania’s website entitled Authentic Happinesss. This website includes a wealth of resources, including videos on topics such as happiness, gratitude, and compassion.
If you simply want to listen to some music to make you feel happier, it’s hard not to smile while watching the world’s first 24 hour music video of “Happy” by Pharrell Williams. The music video features people, alone or in groups, dancing and singing to William’s infectious song. You can view the 24 hour video here. We smiled at the two guys in tuxes in front of a Starbucks at 2:20 pm.