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A Dancer’s Perspective of the World Parkinson Congress

by Claudine Naganuma

dNaga, courtesy of the World Parkinsons Congress

The first World Parkinson Congress I attended was in Montreal in 2013. That year, David Leventhal made a presentation on the benefits of Dance for PD, our very own Gary Turchin brought a film and a book to present, and I attended several inspiring scientific presentations. I also met Eli Pollard, the director of the World Parkinson’s Coalition, who invited my intergenerational dance company, dNaga, to perform at the next WPC to be held in 2016 in Portland, Oregon. We attended that conference in Portland and performed Proteinology during a lunchtime and evening exhibition. That year the WPC named David Leventhal as an awardee for his distinguished contribution to the Parkinson’s community through his leadership of Dance for PD®.

It was clear that dance was becoming more important to the larger Parkinson’s community and in 2018, Eli Pollard again invited dNaga to perform at the next WPC, 2019, in Kyoto. Our dancers worked for months developing and rehearsing the dances we would perform in Kyoto. With the generous support of many individual donors, dNaga was ready!

We flew to Japan with six dancers with Parkinson’s, four youth performers, and three adult professionals. The schedule was packed, starting with a weekend of Dance for PD activities at the Saitama Arts Center in Tokyo. The program, led by David Leventhal, was tailored to the Japanese dance teachers who are interested in offering Dance for PD classes in Japan.  

Next, we traveled from Tokyo to Kyoto, and immediately began rehearsing “Ooh Ahh,” choreographed by Brooklyn-based dancer with PD and inspirational teacher, Pamela Quinn. Ooh Aah, with about 60 dancers from many countries, was performed at the WPC welcoming program. That evening, adorned in scrubs, dNaga performed a site-specific dance, making silly sounds amongst the almost 3000 attendees, the medical displays and posters. Over the next few days, dNaga performed at two lunchtime events, an evening salon, and participated in a Dance for PD class conducted by David Leventhal, offered as one of the congress activities. 

 Led by Eli Pollard, the World Parkinson Congress has been successfully bringing together people with Parkinson’s, caregivers, researchers, medical professionals, and creative individuals. The congress provides opportunities for the Parkinson’s community to develop a global network, exchange information and to be inspired.

Claudine Naganuma

This year at the WPC “Book Nook”, I presented a book that I published entitled Peace About Life: Dancing With Parkinson’s which shares excerpts of interviews that I’ve collected over ten years, poetry and photos of the dNaga dancers. It is in Japanese and English in the hope of fostering the understanding that each of us is part of a larger community.

To end our Japan trip, the company took the Bullet Train (Shinkansen) back to Tokyo for the weekend. We held a Dance for PD class and performed twice at the Toyosu Bunka Center. Many of the people who attended the Saitama workshop the previous week attended the dance performances. It was heartwarming to hear that the dance teachers in Tokyo are excited about fostering Dance for PD classes in Japan. As different as our cultures are, I am inspired and invigorated anew to see how dance universally can impact our bodies, our sense of self, and our connections to one another. 

Dispatches from the 2019 World Parkinson Congress in Kyoto Japan

Norm Frankel – PD Active Board Treasurer

Think of your high school science fair on steroids. Add in a very large slice of the cutting edge of scientific research, a taste of ages old alternative health practices, plenty of exercise, and over 2600 delegates – patients, researchers, care partners, and medical professionals.  That was the 2019 World Parkinson Conference that I had the privilege to attend this June in Kyoto, Japan.

This was a gathering that could be both deeply inspiring, bringing hope of a possible cure for Parkinson’s, amazement at the dedication of so many individuals to the scientific research, and at times deeply frustrating. We have learned so much about Parkinson’s in the past decade, yet it doesn’t feel like we are any closer to a cure.  

Some of the topics of the main lectures and presentations at the conference included the latest research on alpha-synuclein and the role it plays in the progress of the disease and the effect that different genetic mutations may have in contributing to disease. Another underlying theme of the congress was the growing recognition that individualized medicine will play in the treatment of Parkinson’s. 

More than 250 different research projects were presented on posters and medical abstracts. The wide diversity of research topics reflected the complexity of Parkinson’s.

Perhaps the best part of the Congress was the opportunity to meet and share experiences with other patients and with medical and research professionals. Learning from the struggles and insights of so many people was inspiring. 

Click here to read the abstract for all the presentations.

Nancy Husari – PD Active Community Member and MJFF Ambassador

When I was first diagnosed with Parkinson’s disease, I made rules for myself about what I could and could not do concerning travel. I have broken these rules one-by-one. The last rule to go was that I couldn’t travel alone internationally. I really wanted to go to the World Parkinson Council (WPC) in Kyoto, Japan, but my usual travel partners were unavailable. I returned to my pre-diagnosis travel rule: I prefer to travel with a friend, but if that’s not possible I will travel alone. I also knew that for half of the time, I would be at the congress, and that was the main purpose of the trip. What I hadn’t expected was that I would fall in love with Japan on my way to and from the WPC.

In planning, I made sure I had an easy non-stop trip to Tokyo, which meant that I landed Tokyo at an ideal time; I got to my hotel at 4 p.m. and went to bed at around 8, so I was minimally jet-lagged the next day. I had arranged for a guide for one day; I met him at 10:30 a.m., and he efficiently guided me through the process of arranging my bullet train ticket to Kyoto and buying the Japanese equivalent of a BART Clipper Card that could conveniently be used in both Tokyo and Kyoto. I also requested a visit to one of Tokyo’s famous cat cafes, Mocha Cafe, which was, according to Google Maps, a mere .2 miles from my hotel.

Fairly soon in my trip, I realized that I was very happy traveling alone because I could do whatever I wanted whenever I wanted, and often that meant ending my touristic day at 3 p.m., resting, going out for dinner and maybe a short walk close by, and spending a quiet evening in my hotel room. I was bored with my book and almost all TV was in Japanese, so invariably I would get out my travel watercolors and do small paintings based on photos taken during the day.

Fast forward to the end of my trip, where I would spend one night in the same hotel I had stayed in my first three nights in Tokyo. I decided to step out of my comfort zone and go out by myself after dark. I visited the Mocha Café again, which was, as I mentioned before, a mere .2 miles from my hotel. I cavalierly left my back up iPhone battery in my hotel room. What could possibly go wrong? My phone died on my way to the cat café, but I figured I could find the café without my technological crutch. I succeeded, but returning to my hotel was another story. It was 9:30 p.m. in the rain and everything looked like the set of Blade Runner. I was becoming fatigued in the way that only people with Parkinson’s can understand, and my inner battery was about to go the way of my iPhone. I asked a young woman where the Godzilla Hotel was. (I was staying in the Hotel Gracery, and there was a giant Godzilla on the roof.) Her English was quite good, so we were able to determine that I wanted to go to the Hotel Gracery in the Toho Building. She told me that she didn’t have anything to do and that she would walk me to my hotel.

When I tell people this story, they think it sounds scary. It was a little nerve-wracking, but not nearly as much as it would have been if it had happened in the United States. Japan is very safe, and everyone was willing to help me, but only if I approached them and asked. Asking for help is the number one travel tip that I have for travelers with Parkinson’s in Japan. Another important piece of advice is to have your navigational act together before you go. It wasn’t crucial that I be able to call or text. I used email to stay in touch with people. It was, however, crucial to have a phone with Internet, a navigational system on my phone (Google Maps works), a personal WiFi hotspot (I used Japan WiFi Buddy), backup batteries and cords for everything, and a good old-fashioned map. In retrospect, I wish I had practiced using walking and public transportation Google Maps directions before going to Japan. This may sound daunting, but it was also part of the fun. I suggest that you plan as much as possible in advance and be prepared for your plans to go awry. A final note is that when traveling by train and subway, be aware that you might have to carry your luggage up or down a few stairs. I mitigated this problem by minimizing the number of moves that I made. Solo travel is a great way to get to know a place, and as a person with Parkinson’s traveler, it is possible to plan for the adjustments you need to make — whether these adjustments be a companion, an organized tour, or both. Break your own rules about what you think you can or cannot do, be aware of your limitations, be careful, and above all, have fun.

My Recent Ride with PD & the DMV License Renewal Process – By Michelle Cheeseman

pdactivephotopddmv11202018.jpgIn Outing Yourself to the DMV — OR NOT, Gary Sue Goodman writes: “To guide my interactions with this bureaucracy, I wanted the benefits of other people’s experience. PD Active, I thought, could provide such valuable information (1).” When my CA State driver license was up for renewal this past summer, little did I know I’d end up having several communications with the DMV. I’m sharing with you the journey or ride I had during the license renewal process. May this information be of some value to you as you prepare for your own ride!

The driver license renewal form I received in June included the question: “Have you had any medical conditions in the past three (3) years affecting your ability to drive? See Medical Information on p.1 before responding to the question.” Had “Parkinson’s disease” not been one of the medical conditions listed in Medical Information, my inclination would have been to identify the possible responses to the question and then to consider the advantages and implications of each one. As it was on the list, my propensity to be risk-averse prevailed: I checked the “yes” box and wrote “Parkinson’s disease.” For me, this was the appropriate decision to make.

Report: 2018 Town Hall

fullsizeoutput_5PD Active’s annual Town Hall has become the main event where community members can get an update on what’s new with PD Active. It’s also an opportunity for the staff and board of PD Active to listen and engage in discussions about what is and isn’t working and aspirations the community has for PD Active.

This year’s Town Hall took place on Saturday, June 9th and there were 65 participants. After a report from Board President Mary Pat Boersma and brief remarks by me and Board Member Judith Lubman, all the attendees, seven tables in total, engaged in discussions on topics ranging from improving outreach to serving those with Parkinson’s Disease (PD) who are still working.

Report: The Michael J. Fox Foundation Parkinson’s Policy Forum

Nancy Husari (third from left) at Dianne Feinstein's office
Nancy Husari (third from left) at Dianne Feinstein’s office

The Forum began with two days of educational panels where attendees learned about recent research advances and current policy issues affecting people with Parkinson’s, as well as their families and care partners. We also received training on how to build relationships with lawmakers through effective advocacy. A highlight was a breakfast appearance by Senator Cory Booker, whose late father lived with Parkinson’s. In his keynote speech, Booker underscored the importance of advocacy when he said, “I tell each and every one of you, what you do matters.”

Excerpt: Anna Rabkin’s Memoir

From Krakow to Berkeley: Coming Out of Hiding – Excerpt from pages 305-306:

Anna Rabkin Memoir Book Cover“Marty was relieved to know why he had not been feeling his usual energetic self, and threw himself into learning everything he could about PD. He started an exercise programme that included water aerobics, yoga, movement classes, and workshops developed by the Mark Morris Dance Company for people with movement disabilities.  I accompanied him to conferences where we tried to keep up on the latest research on neurological diseases and medical advances.  He became a founding member of a model patient-based, all volunteer support organization, PD Active. As he did wherever he went, he made many friends among his fellow “Parkies”.”

~ Until July 21, 2018, you can obtain a 20% discount from the publisher, VM books. Use the code RABKIN18 at checkout.

How Parkinson’s Has Affected My Life

By Lee Shapiro – 2018

I had a thriving law practice in both Denver and Aspen, Colorado.  I was diagnosed with PD about thirty years ago.  I am slower in activities of daily living. I hate being tied to a clock where I have to take pills every three hours; some of these medications are unpredictable and at times have side effects.  Parkinson’s has impaired my ability to think quickly and remember things.  It has also affected my ability to travel independently.  I cannot drive a car and must rely on other people to get around.

Berkeley organization helps those with Parkinson’s use exercise to slow symptoms

This article written by Karen Garrison was originally published in Berkeleyside on December 5, 2017, and has been reposted with permission from the author.

People with PD take a boxing class at Performance Fitness in Albany to keep fit and improve their coordination. Studies show that exercise can relieve symptoms that medicine cannot reach. Photo: PD Active

Meris Emory likes to mix fitness and fun; her weekly routine includes yoga, dance and boxing. Few people would guess from her workout that Emory has Parkinson’s disease (PD), a degenerative condition that once meant surrender to an isolated and sedentary lifestyle.

Karen Garrison’s Plan for Parkinson’s

Karen Garrison

I was diagnosed in early 2011 at age 61, though I had major symptoms at least a year and a half before that. I’d been a runner for decades; my leg started going weak after a few minutes on the trail, my hands shook uncontrollably, and I had trouble making myself heard. It took many months, visits to four different doctors, a futile round of physical therapy and a useless MRI before someone referred me to a movement neurologist who promptly connected the dots. I was stunned to learn I had Parkinson’s. At the same time, I felt relieved to finally have a name for symptoms that were making me crazy. When I asked my doctor how I could learn more, especially about holistic treatment, he sent me to the internet.