PD Heroes For Parkinson’s Awareness Month

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.

Christopher Reeve

This month, April, 2020, I will be sharing the stories of some People with Parkinson’s (PwP’s) who are heroes for many of us. In February I wrote about A Different Kind of Parkinson’s Hero, highlighting several women with PD who have Parkinson’s who are making a difference for others in their communitites.

Since then, I have received the stories of other “PD Heroes” who will be featured this month for Parkinson’s Awareness Month. As I said in February, I think there are two types of PD Heroes. The Parkinson’s Super Heroes who have gone above and beyond anyone’s expectations to accomplish things that would be extraordinary for someone without PD and the Real Life Parkinson’s Heroes who make an impact on others in their local communities in quite wonderful ways. We need both types of heroes in our lives to combat the old image of PD – the drawing of the hunched over old man, shuffling his feet and shaking. I won’t even reproduce that drawing here because we really want to forget that it exists. You will meet people here in the coming weeks who project a totally different image people with Parkinson’s. They are terrific people living terrific lives.

What I find interesting is that for all of our heroes is that their journey started much like everyone else. Many were misdiagnosed at first, often spending the first few months or even years after hearing those 3 dreaded words “You have Parkinson’s” in a state of shock. Some, like Jimmy Choi, it took several years and a wake up call in their lives, (he fell down the stairs carrying his son), to actually get out and start doing something to improve their own quality of life. Eventually, their passion for doing something that they enjoyed, led them down the path to doing something amazing. Today’s hero, Jon Pawelkop, who I would put in the Super Hero category, took his love of exercise and Rock Steady Boxing and turned it into an incredible journey that took him to every state in the US. This is his story, as shared by his wife, Pat Pawelkop.

Jon Pawelkop – Parkinson’s Super Hero

Jon Pawelkop, from Tampa, Florida, was misdiagnosed with essential tremor in 2014, and correctly diagnosed with Parkinson’s Disease in February of 2016.  The first year was one of coming to terms with what it could mean for him, a difficult time as he was always very active, athletic, and loved to live life to the fullest. He was very afraid of losing all that. 

Exercise and Rock Steady Boxing were the beginning of finding his way back. Jon pushes himself every day, to work hard, be active, and be a role model for others.

Jon’s Journey

In May 2018, Jon decided to promote Rock Steady Boxing and share its benefits with others by creating a personal challenge. Jon’s Boxing Grand Tour Fighting Parkinson’s was started. His goal was to visit a RSB affiliate class in every state, work out with the fighters there, and share a word of encouragement wherever possible. In the 13 months that followed, Jon completed his goal and visited more than 60 RSB affiliates, traveling to every state, and working out with the Fighters at a RSB class.  He did most of this while flying standby, not always an easy task! 

Stop #50 Hawaii
Jon is on the left wearing the orange lei

The last state was Hawaii, where Jon visited a class in Hilo, on the Big Island of Hawaii. He combined this trip with the World Parkinson’s Congress in Kyoto, Japan, which he and Pat attended together. He had the great privilege to help represent RSB while at the WPC in Japan, where he helped RSB coaches from Japan, Norway, Italy and the USA as they demonstrated their lessons for the WPC attendees. It was a great opportunity and a highlight of their journey.

Along the way, Jon also visited a RSB class in Ede, Netherlands, in conjunction with a previously planned vacation to Germany. He plans to continue to visit classes as wherever his travels take him. 

Make It Mean Something, MIMS

Jon was recently appointed as an Ambassador for the World Parkinson’s Congress 2022 in Barcelona Spain. He is excited to see where this new stage of his advocacy journey will take him. He loves meeting people who share his fight, and encouraging others to Make It Mean Something, MIMS, which he has certainly done.

For more of Jon’s story, and background you can reach Jon at jonpawelkop@gmail.com or Pat at patpawelkop@gmail.com Jon also has a short Ambassador bio on the World Parkinson’s Congress 2022 website.    
Facebook –   Jon Pawelkop (personal page), Jon’s Boxing Grand Tour Fighting Parkinson’s (group page)

Real heroes are all around us and uncelebrated.

Peter Capaldi

Who are your Parkinson’s Heroes?

Do you know someone who is a Parkinson’s Hero? I would love to share their stories here. Send stories and contact information to me at twitchywoman18@gmail.com.

Sundays with Twitchy Women

Don’t forget to sign up for our next Zoom meeting taking place on Sunday, April 5 at 10 am Pacific time.

Our guest will be the hilarious Dr. Maria de Leon, author of The Parkinson’s Diva. Wear your Diva bling and break out the Prosecco for our Diva Party. We will talk about maintaining our “Diva-ness during this time of social isolation, oops, I mean social distancing.

You will need to register from now on when we use Zoom for these meetings.  Click here to register for the Diva Party. 

Can we talk?

The late comedian Joan Rivers was known for saying “Can we talk?”. Unfortunately, most of us have forgotten what it means to actually talk to someone else and have a real conversation. We communicate in sound bytes, texts, tweets and lots of photos of ourselves doing things that probably should remain private.

Can we talk?

During this unprecidented time of “Social Distancing”, we should reconsider how we communicate with our friends and family. Remember those days long ago when we spent hours on the phone with a friend, going over the days events, our hopes, our dreams?

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But more than that, just hearing another voice on the phone kept us connected. You could tell how a person was feeling, just by the sound of their voice. Were they happy? Sad? Not feeling well? All clues given by their voice. You don’t get that in a text message, do you?

During this unprecedented time of “Social Distancing”, we should reconsider how we communicate with our friends and family. Remember those days long ago when we spent hours on the phone with a friend, going over the days events, our hopes, our dreams? But more than that, just hearing another voice on the phone kept us connected. You could tell how a person was feeling, just by the sound of their voice. Were they happy? Sad? Not feeling well? All clues given by their voice. You don’t get that in a text message, do you?

For those of us with a chronic disease, like Parkinson’s, it is even more important to stay connected in a meaningful way. We risk becoming isolated even more than the average person, which puts us in danger of seeing our symptoms gets worse. A text message is nice, but it does not take the place of hearing a voice on the other line or seeing someone on a video chat.

clipart.email

Can we talk?

Now that everyone has their own cell phone, gone are the days when you would have multiple phones in the house. It was so easy for multiple family members to be part of the conversation just by picking up another extension.

So, Can we talk? There are two great solutions while you are stuck at home.

1. Just pick up the phone and call someone. Huh? You don’t do that anymore? Try it. You will make someone happy just by talking for a few minutes. So much better than a text.

2. Arrange times to video chat with your children or friends. There are so many ways to do this without paying for a service. Google Hangouts, Apple Facetime, Skype, Zoom, Duo and other phone or computer apps allow you to see and talk to several people at the same time.

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These options have been available for a while now, and are used often by businesses and educational institutions. But we don’t often think about using them in terms of social gatherings.

We are planning to connect our family members near and far in a few weeks for a Passover Seder using one of these apps. Our grandchildren, who live in different cities, will be able to interact and have fun with it.

Others have set up virtual parties on line. My book group met the other night, and we could all see and talk to each other. Even if we can’t get together in person, we are still connecting with each other.

coulorbox.com

My Parkinson’s women’s group will now be meeting on line using Zoom for the next month or two until we can actually get together again. We will have the opportunity to be together through our computers, and fight the isolation that is being imposed on us because of the Covid-19 virus. Whats more, we will be able to include women from all over, not just the Los Angeles area. For more information on our upcoming meetings, click on Twitchy Women Information and Events at the top of this page.

One caveat, however. If you are planning to talk on video, please get dressed and get out of your bedroom with the unmade bed! It’s fine when you are just talking on the phone. No one can see how you look. But video chatting brings another dimension to the conversation, so treat it like you are actually seeing each other in person.

Can you think of anything better to do while stuck at home? I can’t.

Taking a different path, Quarantine & Webinars

Here is my latest post published yesterday on Parkinsonsdisease.net

On the Road Not Taken

By Sharon Krischer · March 17, 2020

illustration from Parkinsonsdisease.net

“Two roads diverged in a wood, and I took the one less traveled by. And that has made all the difference.” – Robert Frost

Each person with Parkinson’s has a different story to tell. Some are diagnosed immediately, others take years.  Our symptoms and rate of progression will vary. So do our medications. It can be so overwhelming, especially when you have just been diagnosed.

I like to tell people to talk to more than one person with PD because no one’s story will be the same as yours.  As in Robert Frost’s famous poem, “The Road Not Taken,” each of us will have to make a choice. We can be passive and give up or do everything that we can to live well with it, recognizing that there is no one right answer for all of us.  continue reading here

Keeping busy while under quarantine

How are you coping with the enforced quarantine? Are you going stir crazy yet? Are your children concerned about every move you make? How about your partner or caregiver?

It can be difficult to maintain any sense of motivation while under “house arrest”. Apathy can take over if you are not vigilant. You need to exercise, but those naps that you take while watching tv or reading a book are so wonderful, why bother with exercise. And so the downward spiral begins.

Mr. Twitchy and I are binge watching a lot of tv, but finding it hard to get moving on those projects that we were saving for a rainy day. Well, the rainy day is here and we need to take advantage of it. We have boxes and boxes of photos that I have started going through. Remember when you actually used film and got duplicates photos when you developed it? And all of those scenery shots from who knows where? In the trash! 3 boxes down to 1 1/2. 17 to go. For you multi-taskers out there, go through the photos while binge watching Mad Men or Breaking Bad. You won’t feel that you have totally wasted the last 5 hours watching tv.

Webinars

Bored? Find a webinar to participate in. There are so many out there. Every Parkinson’s organization is hosting numerous web based activities. Even Twitchy Woman has gotten on board with our very first webinar on Sunday, March 22 at 10:00 am PDT. Kristie Scott, life coach and woman with PD will share what she’s learned so far living with Parkinson’s, and give us some helpful tips on coping with the challenging times we’re in.Learn about Kristie and her Evolution Cards on her website:  https://www.evolvewithkristie.com Evolution Cards sold on Amazon and Kristie’s website. (not required for the meeting).

For more information click here. Registration not required but please rsvp to Twitchywoman18@gmail.com so that I can have an idea how many will join the call. I hope that we will continue to have these webinars on a regular basis while we are all stuck at home. If you know someone who would be a great presenter, please contact me.

Need some ideas for activities? Someone posted this on Facebook and there are a lot of great ideas for things to do.

Found on Facebook

What Keeps Me Motivated While Living with Parkinson’s?

Parkinsonsdisease.net

By Sharon Krischer, published by Parkinsonsdisease.net on February 7, 2020

“You can keep going long after you think you can’t.”
– Heidi Reynolds, Founder Start Living Today PD

I am often asked how I can keep a good attitude and stay motivated while living with Parkinson’s disease (PD) for the past 11+ years.

We know that apathy is one of the many non-motor symptoms of PD, and yes, we are all affected by it at some time. I will be the first to admit that there are many days when I would rather stay at home and do nothing.

Click here to read the rest of the blog

Dear Readers, I occasionally submit blog posts to other sites such as Parkinsonsdisease.net, which published this post several weeks ago. Explore the site and you will find a lot of really good information about living with Parkinson’s Disease.

Sharon Krischer, Twitchy Woman

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.