A Different Kind of Parkinson’s Hero

I think a hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles.

Christopher Reeve

In the last few years, several amazing Parkinson’s heroes have become the face of the Parkinson’s community world-wide. Super heroes like American Ninja Warrior Jimmy Choi, Matt Eagles, diagnosed at 8 years old, who has created Parky Life and has filled some of the void in the UK left by the passing of Tom Isaacs. Linda K Olsen, a triple amputee with Parkinson’s, lives an unimaginably full life in spite of her disabilities. Carol Clupny, has hiked on The Camino in France and Spain, covering a 1000 miles in 4 different treks and cycled on a tandem bike with hubby Charlie in the annual RAGBRAI bicycle race across Iowa 3 times. Tim Hague won the Amazing Race Canada with his son, overcoming many PD induced obstacles to win.

We can’t all aspire to what they have accomplished. They are definitely the outliers. However, there are many people in our community who we can look up to and are our everyday Parkinson’s Heroes. Here are a few that I know personally. I hope to follow up with several more in the coming weeks.

Dancing Through Parkinson’s

Linda Berghoff was a dancer who began to have difficulty doing turns and other dance moves. Once she was diagnosed with Parkinson’s Disease, she started looking for solutions. Because her children live in NY and she is in LA, she searched in both cities for ways to improve her life. She heard about David Leventhal and his groundbreaking work creating a dance program for People with Parkinson’s and immediately contacted him. She trained with him so that she could teach the program once she was back in LA. Her closest friend’s daughter had started a dance company in LA, so Linda proposed that they take on this program. Today, with Linda’s guidance, Invertigo Dance Theater offers 6 classes weekly in different locations in Los Angeles, reaching hundreds of people .

Soaring With Hope for PD

Naomi Estolas, Clara Kluge* and Amy Carlson* are the forces behind SOARING WITH HOPE FOR PD, which really was the centerpiece of the WPC in Kyoto. Their stories are intertwined beginning with the WPC in Portland (more about that later).

Naomi was diagnosed April 2015, however her symptoms go back to 2010, when she started experiencing slowness and movement that was not as fluid as it should have been. She learned that she had Parkinson’s during her work lunch hour. She and her husband were in shock and didn’t know much about Parkinson’s. Naomi decided immediately to start her personal fight against PD. Within the first month of being diagnosed, she attended 2 PD conferences and found the support group that she still goes to.

The three women were introduced to each other by Trish Lowe*, a woman with Parkinson’s who is a support group facilitator. They met at Lineage, a facility run by Amy for PwP’s, at a screening of the documentary film SAVING GRACE with David Levanthal.  The three of them went to Portland together for the World Parkinson Congress in September 2016. I was fortunate to be able to spend a lot of time with them in Portland and saw how quickly they mobilized others when they decided to do something. Naomi approached Anders Leines, a photographer with PD whose work was on display, to take a photo of a group of people with PD in front of one of his photo-murals. She and Clara spent the next two days recruiting people to participate at the designated time. The photo below was featured as a highlight of the WPC by Parkinson’s Life, a UK-European website.

WPC highlights lead
Photo by Anders Leines
Naomi and Clara, bottom left, Twitchy Woman, center

Soon after the WPC ended, Naomi thought about doing a project for the next WPC in Kyoto. SOARING WITH HOPE FOR PD came into being with the goal of making 10,000 origami cranes representing HOPE. Naomi, whose mother is Japanese, had 1000 origami cranes representing Hope on display at her wedding. So 10,000 should be attainable for the WPC, right? Naomi recruited Clara and Amy to help get the project going. Naomi worked nearly fully time on this project for the next 2+ years, again quickly reaching out to others, including school groups, to make many of the cranes, educating them about PD. They also reached out to PwP’s living in many other countries to send cranes with messages of hope written on them. The end result was many more than 18,000 cranes hanging from umbrellas, with messages from around the world in many different languages. The display at the WPC was magical, to say the least.

In a separate, but related project, Clara, who loves to dance, sent out a request for videos of original crane dances by PwP’s. She received so many that she has over 50 hours of videos. Many were shown at the Soaring with Hope for PD display at the WPC. She is currently working on a documentary about the project.

Naomi’s Parkinson’s journey consists of ups and downs day-by-day and even hour-by-hour, even with the challenges she always tries to do the best she can and LIVES LIFE in the present. Her hope is for each of you to do the same. 

Who are your Parkinson’s Heroes?

Do you know someone who should be recognized as a Parkinson’s Hero? Please email me at twitchywoman18@gmail.com with their name and why you think that person is a hero. I would love to share what they are doing with all of you.

*Clara Kluge, Amy Carlson and Trish Lowe will be featured in a future blog post. They are all remarkable women who are Parkinson’s Heroes.

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