Team Parkinson at the 2019 World Parkinson Congress in Kyoto

Edna and John Ball

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.

John Ball

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.

– Gloria Hansen, for The Parkinson Alliance

Chance, Choice, and Remembering Margaret Tuchman

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.

– Gloria Hansen for The Parkinson Alliance

Where Joy Hides and How to Find It

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.”

Enjoy!

Happiness and Parkinson’s Disease

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 Happier immediately 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.


The above is a selection from the 24 hour video.

 

Parkinson’s Unity Walk

April is Parkinson’s Awareness Month! That means it’s time for the annual Parkinson’s Unity Walk in New York City’s Central Park.  This year it will be on Saturday, April 28th.  Are you registered to go? We hope so!

It’s always a fun-filled, inspirational event that raises awareness and funds for Parkinson’s research.

Besides the 1.4 mile gentle Walk, there are several free programs to enjoy throughout the morning at the Bandshell.  Programs include a Wake Up nd Stretch to the Classics; Nia Brain Body Fitness for PD; Dance for PD and the PD Movement Lab; Rock Steady Boxing; Amplify your Life with LSVT Loud and LSVT Big; Small Beach Towel Workout for PD; and musical performances by The Original Mixed Company, an oldies singing group specializing in Doowop, R&B, and Gospel.  Be sure to stroll down Margot Zobel Way where you’ll find sponsor booths with educational information and materials. Visit our Ask The Heathcare Experts booth, where a variety of individuals—such as a movement disorder specialist, neurosurgeon, movement disorder nurse practioner, physical therapist, occupational therapist, DBS programmer, and a nutritionist—are available to answer your questions. Light snacks and drinks are provided, and each participant will receive a tote bag to hold information from our sponsors.

We have been proud to run this event each year.  From the very beginning, 100% of all donations raised by walkers and contributors is designated specifically for research and is divided among the following major U.S. Parkinson’s foundations:

We look forward to seeing you there!

– Margaret Tuchman

Patient-Centered Approaches for the Newly Diagnosed

Newly Diagnosed with Parkinsons?

Our guest blog post is by Gil Thelen, who is a Parkie, class of 2014. He is Executive Director, Florida Society of News Editors; a retired newspaper editor and publisher; and past founder of the PD SELF training program in Tampa. He is completing a book about his journey of discovery with PD titled “Counter Punch: Sparring With Parkinson’s. His website is https://shufflingeditor.com.

We “Parkies” never forget the date that we heard the words.

“You have Parkinson’s disease.  Progressive and incurable. But it is treatable.”

Too often, the words that follow diagnosis are merely to fill a prescription and return in three months.

No counseling about managing the condition. No mention of what to tell, or not tell loved ones, friends or employer. No pamphlets explaining Parkinson’s. No advice about trustworthy information, online and off. No mention of support groups to join.

Lesson learned:
There is no system of care to enter if you have Parkinson’s. That’s the case unless your treatment is from an extremely small handful of highly specialized and patient-centered institutions.
It’s all on you. You live by your ingenuity and perseverance.
Good luck.

That grim lesson won’t stand for some fed-up Parkies. They are creating patient-centered approaches to management of their condition.

University of Colorado Neurologist Benzi Kluger is field-testing an umbrella organization that provides education, counseling and assistance to Parkies who want to write their own care plans. Test sites are Denver, San Francisco and Alberta.

PDF consultant Diane Cook is field-testing a different model. It lacks an umbrella organization but trains Parkies to become captains of their own health-care teams. Her program is PD SELF (Self-Efficacy Learning Forum). Reports are encouraging from the nine test sites finishing year one.

Here in Tampa Bay, committed members of PD SELF want to spread key lessons they’ve learned: You can counter punch PD and retake some lost ground of competence.  You can live well despite PD.

Living well entails aggressive self-management, rigorous exercise, changed diet, mental conditioning and deep understanding of your condition.

I call the PD SELF veterans the “Special Ops” group. We are ready to share our experiences with newly diagnosed Parkies.

Our challenge is to find newly diagnosed Parkies and connect.

We are committed. We will find our way. We have so far.

– Thank for Gil, for your Parkinson’s voice.  For more information, see PD SELF (Self-Efficacy Learning Forum). Another resource for the newly diagnosed is the 1-800-4PD-INFO helpline from the National Parkinson Foundation and their Newly Diagnosed resources. Also see A Practical Guide on Talking about Parkinson’s at Work from the Michael J. Fox Foundation.

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