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.

Grit and determination can help you get ahead when you have Parkinson’s

“Singing a happy tune stops you from thinking bad thoughts. Next time you feel a panic attack coming, try singing, humming or whistling, or even just smiling”

Carol Clupny

That was just one of the insightful comments that author Carol Clupny shared with us today at a meeting for women with Parkinson’s. Carol was diagnosed with Parkinson’s 12 years ago. Like many of us, Carol did nothing, spending much of her time at home in a comfortable chair for awhile. One day she decided to take her life back by forcing herself out of her easy chair and walking to the mail box. The next day she  crossed the street. She continued walking and a year later she walked the Camino de Santiago*, a 500 mile trek across northern Spain. That first walk was the beginning of her Adventures with Parkinson’s. She kept returning until she had walked over 1000 miles.  Carol then went on to do things, mostly physical challenges, that she never would have considered, even before her diagnosis.

The Ribbon of Road Ahead

Last spring, Carol published her book The Ribbon of Road Ahead, which recounts 3 of the 4 times that she walked on The Camino in a 4 year span, as well as her 4 rides across Iowa on a tandem bike RAGBRAI (Register’s Annual Great Bicycle Ride Across Iowa) bicycle ride, and her experience having DBS (Deep Brain Stimulation) surgery to relieve her PD symptoms.

After reading an article on cycling as it mitigates some of the symptoms of Parkinsons, Carol and her husband Charlie started cycling and have ridden the RAGBRAI four times.  First on a borrowed tandem they nicknamed THE BIG YELLOW MOSQUITO EATER and in three subsequent rides on their own University of Oregon green and yellow colored tandem GREPEDO.

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Carol and her hiking backpack
photo by Sharon Krischer

In the last 10 years, Carol has been determined to beat PD what ever way she could. Before the onset of PD, Carol and her husband Charlie would go horseback riding, hiking in the nearby mountains in eastern Oregon, and traveling. Sometime after her diagnosis, everything changed. Carol sought out more and more difficult challenges, with international travel, long distance biking and hiking. And now she has shown how grit and determination to do something enabled her to become, in a sense, superhuman. Doing things she never would have dreamed possible such as getting involved in the Parkinson’s community, writing a book, and public speaking.

We talked about that during our time together. So many people we know with PD have taken on challenges that the average person would never dream of. Someone like fellow person with PD, Jimmy Choi, and his exploits on American Ninja Warrior is just one extreme example. Were we always like that or is it something new after our PD onset? What is it about Parkinson’s that many of us approach life in this way? Is it the lack of dopamine? Our medications?

Carol and Charlie on the Road

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Mr. Twitchy, Carol, Sharon and Doolie
photo by Charlie Clupny

Carol and Charlie pulled into our driveway on Saturday with their new 22 foot camper van Doolie. This has replaced the old camper that they used to get to and from Iowa for the bicycle ride. With the van, they are traveling in comfort, often for weeks at a time, all around the US. For their current book tour, Charlie even had window clings made to fit the windows, advertising Carol’s book! Now that is dedication.

Carol and Charlie, I have one suggestion for you. Since the RAGBRAI starts when you dip your back bicycle tire in the Missouri River and ends when you put your front tire in the Mississippi, why don’t you shorten the ride to just a few hours by starting on the Missouri just west of St. Louis, my home town, and finish 30 miles later at the Mississippi where the two rivers meet. Mr. Twitchy and I would join you on that ride!

* The Camino de Santiago (the Way of St. James) is a large network of ancient pilgrim routes stretching across Europe and coming together at the tomb of St. James (Santiago in Spanish) in Santiago de Compostela in north-west Spain.

The Ribbon of Road Ahead is available either on Carol’s website or on Amazon.

Reaching a Milestone and an Inspiring New Book to Read

Look at you.  You’re in Spain.  You’re walking out here on the Meseta.  How many people are doing this?  How many people with a chronic disease do you see out here today?……Do something good, Carol.  Find something good to do with it.”    From The Ribbon of Road Ahead

 

Twitchy Woman has reached a milestone.  This is post #201 ! ! !   When I started this blog, I never expected it to  continue for as long as it has.  And what a ride it has been. Somehow, I have posted almost weekly in the last 4 years, and am honored to have made Best Parkinson’s Blogs lists at least 6 times (see the sidebar).  Other opportunities for me have come up as a result.   I want to thank everyone of you who has been following me, whether it has been for 200 posts or just 1.  My initial blogpost was seen by just 15 people.  There are now over 1500 followers.  Your support and encouragement have kept me going.

On my way to Kyoto!

Speaking of opportunities, as you may know, I submitted an abstract to the World Parkinson’s Congress.  At medical meetings, researchers are asked to submit abstracts (a brief description of their research study).  If their abstract is accepted, they will then create a posWPC2019_LOGO_246x153.gifter based on their research for display.  For the WPC, People with Parkinson’s (PwP’s) were also encouraged to submit their ideas (abstracts) for living well with PD.  There will be hundreds of posters on display throughout the conference.  If you are attending the WPC, look for me on Wednesday, June 5,  between 11:30-1:30.  I will be at my poster in space 649 to talk about it and I would love to meet you.

Thank you to all who responded to my survey for this project.   I cannot give you the final results until after the WPC, but the most important things for someone to live well with PD are Exercise and Getting Enough Sleep.  Neither of these should be a surprise for anyone with PD.  If we don’t have a good night’s sleep, the daytime fatigue can be debilitating.  And that fatigue manifests itself in many ways.

As far as Exercise is concerned, the more you do, and the more intense it is, the better.  I had hand surgery last Thursday and have not been able to exercise since.  I am already noticing, 5 days later, that my tremor is acting up more.  We need to think of Exercise as medicine, and I have not been taking my medicine.

The Ribbon of Road Ahead

And speaking of exercise, I just finished reading an inspiring new book by fellow PwP, Carol Clupny titled The Ribbon of Road Ahead.  After her diagnosis of Parkinson’s, Carol was determined to walk The Camino de Santiago. If you have traveled in northwestern Spain, from Pamplona to Santiago de Compestola, you may have seen hikers walking along the route marked with seashells pointing the way.  Pilgrims from all over the world come to walk on this grueling 500+ mile network of pilgrim routes, from Southern France to Spain, for many different reasons, often hiking through rocky mountain passes.  The Way, as it is called in the movie with Emilio Estevez and Martin Sheen, is difficult for anyone without disabilities, but Carol was not going to let that stop her.  With her husband, son and other family members and friends at her side, she recounts the obstacles she faced as well as the accomplishments.

Carol went back 2 more times to walk parts of the trail with other women whom she had met along the way.  She has also biked across Iowa 3 times with her husband on the annual 450 mile RAGBRAI (The Register’s Annual Great Bicycle Ride Across Iowa) with the Pedaling for Parkinson’s team.  Much of the ride was done on a tandem bike named Grepedo.  She did all of this before her DBS surgery a couple of years ago. The final chapters recount her surgery and the small successes that were the beginning of regaining her life before PD.  Her story is inspiring, and shows that determination and grit can help those of us with a chronic illness get through some of the more difficult times.  Carol has indeed done something good by sharing her story with us.  Look for Carol at the WPC in Kyoto if you are there.