Since its inception, our blog was primarily written by Margaret Tuchman, President of The Parkinson Alliance, and her blogging partner, Gloria Hansen. Margaret was diagnosed with Parkinson’s over 35 years ago and was a voice in the Parkinson’s community. To honor Margaret’s vision, Gloria (with The Parkinson Alliance) will continue writing the blog for the Parkinson’s community.
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.
— Gloria Hansen, for The Parkinson Alliance
Dyskinesias are uncontrollable involuntary movements that are different from tremors. For people with Parkinson’s, it is a common experience that for some can be mild while for others can routinely negatively impact daily functions such as speech, chewing, swallowing, dressing, handwriting and other quality of life issues. The Parkinson Alliance, in its latest patient survey, addressed dyskinesias. The objectives of the survey were threefold — to learn about dyskinesias’ impact on daily function; to understand the relationship between dyskinesias, emotional well-being, and quality of life; and to provide general comments about and recommendations for treatment related to dyskinesias. The survey was taken by 935 individuals. The average age was 71, with an average disease duration of ten years.
Jeffrey Wertheimer, Ph.D., ABPP-CN, our Chief Research Consultant and Chief of Neuropsychology Services at Cedars-Sinai Medical Center, Los Angeles, California, assisted us in creating and analyzing this survey. Examples of comments include:
“Dyskinesia makes it harder to concentrate on what needs to get done ‐‐ writing, using computer, choosing words ‐‐ it is an extra distraction especially when there are time constraints and more than one or two projects that need to be done.”
“Dyskinesia is very annoying and uncomfortable. I feel I have to explain why I am jumping all over the place to strangers. When I am home I twist until my shoes and socks come off my foot. When I lie down to rest I sometimes move so much I need to get up.”
When Margaret Tuchman began creating these surveys, her goal was to provide a way to hear and validate the voice of the person with Parkinson’s. This latest patient-centered survey, which is now complete, carries on her tradition. We invite you to download, read, and share it with your doctors and loved ones. Download the complete survey here, free of charge.
Please also consider participating in our current survey, which is on urinary symptoms and Parkinson’s. The data collection for this survey will conclude on December 1, 2019. You can take the survey online here.
— Gloria Hansen, for The Parkinson Alliance
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.”
“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.
– Gloria Hansen, for The Parkinson Alliance