Patient Stories

Naomi Estolas, Amy Carlson, Clara Kluge

Fast friends, Naomi Estolas, Amy Carlson, Clara Kluge are each “doers” by nature and each wanted to “do something for the community” for the World Parkinson Congress (WPC), still years away. Here is the story of how they made a reality the amazing, multidimensional Soaring with Hope: The Crane Project for the World Parkinson Congress in Kyoto, Japan in the Spring of 2019. To learn more about the project visit their Soaring with Hope Facebook page.  See some of the dances submitted on cranedances.com.

Naomi Estolas

How did you get the idea for Soaring with Hope?
Amy had a book on Origami and was talking about using this art form to help preserve hand dexterity. In Parkinson’s, fine motor skills decline— it’s hard to even hook a necklace. As Amy, Clara and I looked through this book, I shared the Japanese legend that a crane lives 1,000 years.  So, the making of 1,000 origami cranes, one for each year, has come to symbolize a hope for happiness and longevity. At the Hiroshima Museum, people rallied to complete 1,000 cranes and a monument to Sadako Sasaki, a young girl dying from radiation exposure Then, the 1,000 cranes also came to mean hope for peace.

I also told them that when my husband and I got married, back in our 20’s, my family and I folded a thousand cranes, as a symbol of hope and happiness.  I’m half Japanese, and my mother’s side of the family is from around Hiroshima. So, I told them the story of Sadako, and how still today, 60 years later, people bring origami cranes from all over the world.  Wouldn’t it be neat if we could do the same thing for the World Parkinson Congress?

How did you get started?
Our early idea was just to do an installation of origami cranes to be on display in Kyoto. We planned that each would have a message of hope from people with Parkinson’s disease from around the world. Our goal was 10,000 cranes of all colors, strung from these beautiful paper umbrellas that Clara found.  They would appear to float from the ceiling. It would be a vision of hope and happiness to make the spirit soar! It started with this idea, but Amy and Clara made it even bigger, with videos and the Dance Project.

We began by talking to everyone!  Eli Pollard, who heads the World Parkinson Congress, was an early fan, as was Alison Miller at US WorldMeds.  Both gave us grants for the project and were huge champions almost from the start. Kyoto was a long way away, and we needed the grants— we needed TVs to show the videos and shipping alone cost $2,000!

How did you get everyone to make cranes?
As we started… I got out in the community. Sarah Osborne at the Parkinson’s Foundation hooked us into a few Moving Day Events and other educational events in California, and I offered to talk to people, especially if someone was just diagnosed.  I really feel that you must be positive and always do the best you can; otherwise, Parkinson’s Disease (PD) can take you down the path of depression.  There’s always hope.

It’s been wonderful to meet and connect through social media.  We had people send in wishes for the cranes or cranes themselves from 39 countries!  And I myself went to many of the events, trying to raise awareness. When I talk in schools, I give them a little info about PD and ask them what they’ve learned and to tell their friends and families… A lot of this project, Soaring with Hope, aims to raise global awareness and to give hope.

More than 500 volunteers helped to fold, attach to the strings, and make bundles of the cranes so that we could ship them. Everything was bundled in my living room— long strands, shorter ones. No one could come in my living room for over a week. My neighbor and five women who are friends went to Japan to help.  Members of the Japanese Community Center made 5-6,000 cranes.  Their support for this project was wonderful…. And, of course, my family and friends all helped. My husband and my 16-year-old daughter and her friend all came to Kyoto. They helped us set up the whole exhibit:  34 umbrellas, 1500 strands… each umbrella had 400-500 cranes.  On set up day, 15-20 people worked from early in the morning until 11 pm at night setting up umbrellas, hanging the strands, opening and making each crane pretty.

When I saw them for the first time, it was incredible to see all of them together, it was beautiful. When you looked up close, you could see the messages… on the wings…

Were you surprised at the reaction?
Yes!  We were very surprised at how many we got— 16,000! Way over our goal of 10,000. And we have them from over 39 countries. Andy Butler, who I met through Facebook, did cranes for us in the UK, and folks from Germany shipped us a box of cranes.  Other people gave us messages to put on the cranes. People as far away as from Nepal, and Middle Eastern countries.

When you consider it, we have a lot of great resources; some of these folks, they don’t have much of anything.  The cranes spoke to them and made them feel part of something bigger.

What’s in the future for Soaring with Hope?
We did not have the means to bring everything back. We decided to give everything away. I worked with the WPC, and we ended up giving away 35 umbrellas with the strings of cranes. Different people and organizations committed to take it back to their community and expand it on a local level.  All my birdies left the nest— they are all around the world… like planting seeds, to grow hope…

Now, back home, I’m trying to work with support group leaders to continue to give hope.  There is a mindfulness to making cranes.  You might need some help with Parkinson’s… it could take a while to make one crane. But it helps with cognitive skills, because there is a sequence, and it helps with socialization.  But there is also a sense of accomplishment. And you can do it with friends, kids or grandkids.  But I always say, just get a glass bowl and just start putting them in there. You will have a beautiful bowl of hope that’s growing in front of you.

Last, what advice do you have for someone newly diagnosed?
The past is the past… You don’t know what the future is going to be; so live now. Always live now.   And whatever else, continue to hope— don’t lose hope— and always have hope.

 

Amy Carlson

So, you helped come up with the idea of the origami cranes?
Yes. It started so long ago, the origin has dimmed in our minds, but we were at a Chinese restaurant eating pork dumplings!  I had the origami kit and was talking about using it for hand dexterity in PD. Then Naomi shared that she had folded 1,000 cranes for her wedding and proposed that we fold 10,000 cranes and take them to Kyoto. So, an idea was born, but Naomi was the visionary heart and soul of the project. And of course, Clara came up with the wonderful Crane Dance video project.

What was your role?
I’m an engineer, so I helped develop the stand, and how the pole would work with it and help with the shipping. Shipping can be expensive and complicated. My brother works in Thailand and he was helpful in figuring out this stuff.  Then I helped Naomi figure out how to compartmentalize and fit the whole thing on a pallet. I worked in construction management, so logistics are second nature to me.

I also helped promote the project by making a video— I make a lot of videos! And I’m an Ambassador for Davis Phinney Foundation, so I talked to a lot of people.

We each brought different skills to bear. Clara in her past life worked with deaf and special needs children and had a flair for dance and the arts. Naomi worked as a trainer and IT— you should see the spreadsheet she created of all the wishes!  But this was a whole new thing and none of us had ever done anything like this.

How did you get the word out?
Clara started making these fantastic jackets and selling them to fundraise.  They became works of art.  We were going to events…talking to people. We went to the Brain Health Fair with the American Academy of Neurology, where I had a table as an Ambassador for Davis Phinney. Naomi had brought an umbrella and some cranes, and we were walking around with these aprons with origami paper in the pockets folding cranes. Alison Miller from US WorldMeds came over… and said she just loved it!  Well, we were looking for a sponsor.  This was the beginning of a great relationship with US WorldMeds. Without them, it would have been very difficult to make this happen.  Alison was a believer and supporter from the beginning. She had a lot of ideas and brought a business perspective. Britannia Pharmaceuticals was also a wonderful sponsor and the Meyrow Foundation was there from the start.

We went to a lot of workshops to promote folding cranes. Moving Day events, support groups, youth groups at churches, you name it. We were able to reach into the community and do educational events. For me, there’s no better feeling than going into a group of kids and being able to talk about Parkinson’s and raising awareness.

We also put cranes and umbrellas up at Lineage, a performing arts center in Pasadena, where I do rehab work and lead some Dance for PD classes.  We put them up because we needed a sense of how they’d look. We did the Lineage Follies and that was the first time we saw the umbrellas and cranes set up. This really dovetailed with the Dance Project Clara came up with.

What touched you the most?
The involvement of the community really touched me. People from 39 countries got engaged!  I remember the day we got cranes from Germany. UPS delivered a box filled with cranes to Naomi’s house. All the cranes had hopes on them written in German; all folded by a group of women in Germany.

If you didn’t fold cranes, you could send in a message of hope, through our Facebook page or through email.  We received more than 3,000 individual hopes.  As hopes would come in, Naomi would enter and log them on a spreadsheet.   I would sort them and look at the topics. To read through them was a stunning and heart moving, soulful thing. People would send very personal and poignant messages addressed in general or to specific people.

What do you think made the cranes so popular?
It is a way to engage people so simply. When you talk to someone about folding origami cranes, it’s a route of entry into this very serious thing, a neurological disease.  It allows people to engage, and it’s a lot easier. It’s also very positive and hopeful. And a way to bring them into the Parkinson’s story. I went to Wisconsin to visit my parents and I’m on the plane folding cranes.  The woman next to me asked about it, and then she’s folding cranes, too. We’re still friends on Facebook!

Of course, now I can fold a crane by heart. But I realized how important hope is.

When I talk with support groups—I teach a wellness planning class— I now ask, “what are your sources of hope??”  It’s really an important part of the journey.

How has hope been part of your journey?
I was diagnosed in 2012 when I was 44. We moved to Southern California a year or so later. When I was working full time, I was not involved in much of anything. When I went on disability, I started getting involved with the Davis Phinney Foundation. It’s all about living with the disease well now.

Life doesn’t end when the Parkinson’s Film making is a big part of what I do.

I’ve been putting together films for a while… most are for friends and family, but I’ve made a few for Parkinson’s awareness. Mostly to try to tell my journey.

Ironically, the biggest blessing for me was to be diagnosed with PD. I was living for tomorrow, “the next big thing,” always what was coming up. Now I’ve had to change my mindset completely. I live for right now, and I’d never go back. This is all you have:   Right now, this minute. Everything you think about the future, you most likely are wrong. Spending a lot of time in the future is not such a great place to spend your time.  A lot of people are not as lucky as I am… they wake up on their death bed and realize they’ve missed out on their lives.

Life doesn’t stop when the Parkinson’s starts.  It’s important to me for people to understand that it may be hard, but there’s always a way through. And Hope is a big part of it.

My favorite question that I ask people… “What are sources of hope in your life?” and the understanding of the importance of that, comes from the Soaring with Hope project.

 

Clara Kluge

How did you get involved with Soaring with Hope?
Over two years ago, it was the summer of 2017, and the three of us were catching up on what happened over the summer, eating at a Chinese restaurant in the mall. Amy had just bought a book about origami, and while Naomi flipped through the book, she talked about the symbolic impact origami cranes had in her life. Naomi is part Japanese and cranes are a symbol of hope and health in Japanese culture. She also talked about the upcoming 5th World Parkinson Congress and reminisced about the past Congress in Portland, and how we interacted with Andres L larger than life portraits of people living with early onset Parkinson’s, We had taken selfies of a bunch of us standing in front of the photos—a photo within a photo. Naomi said, “let’s do something unique and interesting.” It just snowballed from there. The three of us bring unique and complementary skills to this project. Our background is quite diverse: Amy is a civil engineer; Naomi an IT guru and my background is in the arts. We all complement each other. Thank God we are all team players!

How did you find the umbrellas?
I was on vacation in Thailand, in Chiang Mai. I went to an umbrella making factory where you could see how paper umbrellas were handmade, from start to finish. At the end, artisans decorated them. I just loved the vibrant colors and it dawned on me that this would be a great way to display the origami cranes. So, I bought 10 small ones and had the artist paint a crane on them with the words “Soaring with Hope.” Returning home, I created small versions of the Soaring with Hope umbrellas, decked out with small paper cranes hanging from the ribs. These mini umbrellas were mailed and given away to PD organizations, pharmaceutical companies, and support groups. It was a way to get the word out.

In Kyoto, we ended up using 34 bigger umbrellas in the art installation, each with 500 cranes with messages of hope. They were arranged in a contemplative pathway to the PD Crane Dance Project videos shown on a monitor screen.

How did you help spread the word?
We knew we needed funding to make the cranes happen. We also knew we needed to create excitement and get the word out there. What better way than to advertise through wearable art! I went to thrift stores and bought used jeans jackets and had the logo “Soaring with Hope” and an embroidered crane sewn on the back. Each one was unique, just like Parkinson’s disease. I call it designer jackets for a designer disease. Citron Clothing was so helpful in making this happen. Everyone wanted one!

How did dance come into the picture?
The PD Crane Dance Project was a spin-off from the art installation. Dane is another form of artistic expression and I was told from Day One after I was diagnosed that I needed to exercise. I don’t like to exercise but I do like to dance!

A year into the Soaring with Hope project, I was dancing and improvising with my fellow dancers and got into a crane pose, which triggered the idea of a crane dance. So, the idea was that first, it was an open invitation to submit a crane dance, no judgments; second, anyone from the PD community could participate, and third, it was a global endeavor.

I wanted to create an opportunity for those who could not attend the Congress to still be there in spirit through their dance. The sky was the limit on what to submit as a crane dance: solos, duets, groups, with music or without, on stage, or outside. There was no stipulation except length: the video could not exceed two minutes. And of course, crane-related.

I met David Leventhal, the program director for  Dance for PD®, while I attended a Dance for PD class in Brooklyn at the Mark Morris Dance Center in November 2015. I then met him again at a dance training workshop David was giving at the Canadian National Ballet School.

Two years later in 2018, on a cold blustery February morning at the Canadian National Ballet School in Toronto, I met with David and told him of my crane dance idea. We talked logistics on how to make it soar. At the end of our meeting, I gave him a Soaring With Hope Designer Jacket, which he immediately put on and then flung his arms up into a beautiful crane pose.

I created a website where people could request a Box-O-Cranes, consisting of a box of hand-folded origami cranes. I had the idea of sending the cranes to inspire people to dance. The site was used to upload their videos of their crane dances, which I then compiled into a montage for WPC. (see cranedances.com) We also had the idea of sending origami cranes to inspire people to dance. Our goal was to be all-inclusive, to involve the full PD community.

Music was the net thing on my list. I knew there would be a problem with copyright laws, so I asked two creative music artists I knew to compose a two-minute piece for this project. Along with Aris Chalin and Shauna Toh, Richard X Bennett generously contributed three musical pieces. One of Bennett’s original works featured Paula Jean Bennett singing. You can listen to their inspiring music on the site.

Were you surprised by the response?
Absolutely! I didn’t know what to expect at the beginning, sending e-invites to participate in the Crane Dance Project into the ether! I was hoping to have enough videos to capture one hour’s worth of footage that I could show on a continuous loop throughout the day at the Congress.

After the launch party that was hosted by Dance for PD® in Brooklyn, the videos started coming in and the paper cranes went soaring out. Each time I received a new video, I would eagerly watch it in awe of the creative spirit of the dancers. It gave me goosebumps. Some drew me to tears. They were each unique, yet there was a sense of connectedness.

In the end, over 140 crane dance videos were compiled featuring more than 1800 dancers from 17 different countries. Almost five hours! It is the largest PD dance project ever! We wanted to show them all. So, we had to divide it up into two 150-minute loops that were shown on two monitors, one at the art installation, another at the Dance for PD® booth.

Attending the Congress was super special for me because I got to meet the dance artists in person. Needless to say, there was some screaming and hugging involved. What was super neat were the people I met who knew about this project indirectly— through someone else involved in the crane dance. One nurse practitioner told me she knew all about it because a number of patients were involved. Another woman at the Congress had a close friend dance in one of the videos.

This project inspired people in many ways— writing poetry, making new friendships, building confidence, being part of a global community, and yes, learning how to fold an origami crane!

It is the largest global PD dance project to date! But this could not have happened without the integral support of the Dance for PD program, and Parkinson’s Movement Disorder Alliance and the funding from US WorldMeds, Brittanica Pharmaceuticals and Takeda Pharmaceuticals.

Do you consider this your legacy?
I consider this to be not my legacy but our legacy, our communal legacy, a living legacy. What I hope is that we can look at this moment in time and feel connected to each other through Parkinson’s and the universal language of dance. This is a living legacy of friendship, camaraderie, collaboration, perseverance, creativity, acceptance, dignity, global unity and inspiration!

 

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