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. 

A Note To My Readers

I love to see your comments and get your emails as we share our collective experiences. But based on a couple of private questions from some of you, remember, I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctor

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