Parkinson’s Disease Heroes – 5 Unbelievably Astonishing People

Parkinson’s Disease Heroes

Parkinson’s Disease Heroes and Mentors – Who Are They?

Who are my Parkinson’s Disease Heroes? Coaches? Mentors? Role Models?

These are the questions I set out to answer.  As I think about each one, they conjure up emotions and memories that bring on a happy, grateful, upbeat feeling. 

I give thanks to these people for playing a significant role in my life. Hopefully, you to take a moment to think about each of these roles and the individuals who played a major role in who you’ve become.

Envision how thinking of them makes you feel.  How did they impact your life?  Do you still apply what they taught you?  

Ah, thinking about all your heroes, and coaches… don’t you feel great?  Are you feeling upbeat?  I sure hope so! 

Now let’s begin the journey to answer the questions above.  But, how do we get started? Well, what do Mr. Webster and Merriam have to say about these people?  Wait, a minute!  Who are Mr. Webster and Merriam?  The fine people from the Merriam and Webster Dictionary of course.

Life Changers – Parkinson’s Disease Heroes

What exactly is a Parkinson’s Disease hero? Can anyone have one?  Can you have more than one?  Let’s take a peek at what the dictionary has to say about heroes.  As we explore this role, conjure up an image in your mind of your hero.  How do they make you FEEL? Why do you feel this way about your hero? Are they still your hero?

Hero

According to Merriam and Webster, a Hero is:

• A person admired for achievements and noble qualities
• One who shows great courage
• An illustrious warrior

I tend to agree with their assessment of a hero: a person who is admired for their achievements and NOBLE qualities and one who shows great courage.  In case you were starting to nod off, you can probably see that I want to focus on the Noble qualities definition of a hero.  

When I think of my Parkinson’s Disease heroes (whether living or deceased) I think of these individuals who have had a profound, positive impact that has changed the direction of my life.  I was fortunate in my life to have many Parkinson’s Disease heroes who appeared at different stages in my life. 

Now let me pull back the curtain and talk about my Parkinson’s Disease heroes (Yes I have multiple people who meet the Noble quality definition).  So let’s answer the questions about heroes.

My Parkinson’s Disease Heroes

1.  My Parents – Barb and Joe Kustanbauter

What your parents? Who thinks their parents are their heroes?  Yes, you did read that right – my parents.

My parents didn’t sit me down and say, “Chris, today’s lesson is: Integrity.  So sharpen up the ole #2 pencil get your bluebook out and start taking notes.” 

No, I got the roll-up-your-sleeves hands-on learning. 

Well, what did I learn from them that makes them my Parkinson’s Disease heroes? If you’ll indulge me let me rattle off a few things:

1. Family – My parents always put family first.  They attended any activities we were involved in from sports to musicals and were our biggest supporters.  They took us to our grandparents and Aunt and Uncle’s houses for family activities and family time.  It gave you a sense of community and the ability to learn about your family history.  But most importantly, they were always there to provide support and guidance when you needed it.  

2.  Spirituality – My parents took us to church and Sunday School every week.  I joined our church’s Youth Group in 5th Grade (this is where I met the next hero that I will talk about next).  When I was in college, I was President of our Fellowship Of Christian Athletes groups and we would do a lot of community service and outreach.  This taught me to be grateful and to help others who needed it.  You helped people not because you were being compensated, but because it helped lift someone and made a positive impact on their lives. This is why I like to start my day with 3 things I’m grateful for.

3.  Integrity – To me, integrity is doing the right thing even when no one is looking.  I don’t believe in cheating, lying, stealing…  I believe in putting myself in others’ shoes and how would it make me feel.  To this day, I say to myself, “Chris do the right thing.”

4. Commitment – One of the things that are still etched in my brain is “If you sign up to play a sport, musical, play, etc. you don’t QUIT!  If you don’t want to do it next year, fine but if you start you stay until the season or event is over.”  This taught me to show up and give 100% to my team or classmates.  People were counting on you to give your best efforts.  This is one of the best lessons I had for my kids.

5. Community – There are always people who need assistance.  Help others as much as you can.  This not only makes a positive impact on them and their family but gives you a sense of satisfaction that you could help others.  So, if you get the opportunity – PAY IT FORWARD!  This is one of the reasons I started this blog.

Parkinson’s Disease Heroes – Scott Konkle

I had the opportunity to meet my second Parkinson’s Disease hero when I was in the ripe old age of 10 when I was in 5th grade.  Let me introduce you to my best friend of almost 50 years. Scott and his family are the epitome of community service and giving of your time to better your community. 

Both Scott and I learned from his parents, Don and Faye Konkle.  They were lifelong members of the fire department and were always the first to respond to an emergency no matter what they were involved in.

They were active in the Red Cross, in fact, Don was close to the 20-gallon club in blood donations.  They were both active in the church and were involved in all the church dinners and community outreach projects.  If someone needs help, you didn’t have to ask, they were first in line.  Scott and I not only learned from them, but he passed it on to his family.

My family and I have the opportunity to be great friends with Scott’s family; his wife Lisa and two children, Janelle and Josh. 

The whole family is the embodiment of the Konkle family’s belief that by helping others you better your community and the communities around you.  I am blessed to know and continue to learn from such selfless people.  Scott and his family will always be true Parkinson’s Disease heroes in my eyes.

Parkinson’s Disease Heroes – My Family 

While I can probably think of many people who have impacted my life in a positive way, that doesn’t necessarily make them my Parkinson’s disease heroes.  I am grateful for all of the things they have taught me and I try to incorporate them into my life.  

 The last Parkinson’s Disease heroes I want to discuss are my family.

First my immediate family, my wife Mary, my children, Emily and Derek Kustanbauter, and, my daughter-in-law Molly Bray. 

When you have a degenerative brain disease, hopefully, you don’t have to go it alone.  I have been fortunate to have a loving family supporting me throughout the entire process.  I think it is important to have people who are supportive when you need help, but not enablers that don’t push you to do your best. 

What do I mean by this?  Well, we all have days when our walking and balance may not be good.  Instead of saying, it’s okay, you sit there and I’ll take care of you.  They are there to support you if you need help, but you do it on your own.

Parkinson’s Disease Heroes – Mary Kustanbauter

Mary has always been the take-charge kind of person ( I mean this in a good way).  She has a heart of gold and is always doing something for others when they need help.  The same goes for me.

She goes to all my doctor appointments, picks up my medications makes sure they are correct, and holds me accountable (gently nudges me or something to that effect. We’ve been married 36 years and she’s taught me to be a better person. 

I admire her work ethic, ability to manage multiple priorities, and her willingness to help and give to others.  That’s why she is my Parkinson’s Disease hero.

Parkinson’s Disease Heroes – Emily Kustanbauter

Ah, what can I say, my daughter, Emily is my “mini-me”,  for those of you who have seen the Austin Power Movies.  Emily likes to make people laugh, get to know people on a personal level, and is very empathetic towards others.  Those are nice attributes, but why is she, my hero?  Well, if you let me indulge for a moment, have a peek below.

1. Emily is adventurous.  She decided after attending culinary school in Italy with her brother Derek, that she wanted to become certified to teach English as a Second Language (ESL).  She moved to Rome, Italy by herself and completed the ESL program while making many friends from all over the world. After becoming certified, she accepted a teaching position in Bielsko, Poland.  She moved to Poland without being able to speak the language and without knowing anyone.  Because of Emily’s personality within a few weeks, she had a group of friends that act as her Polish family.  I know I would not be the first to volunteer to do what she accomplished.
2. Emily is Compassionate – She is always first in line to support her friends or others who are less fortunate. 
3. Emily loves to have Fun – She loves to laugh and have a great time with her friends and family.

These are the attributes that make Emily one of my Parkinson’s Disease heroes

Austin Powers Mini-Me video

Parkinson’s Disease Heroes – Derek Kustanbauter

Well, if Emily is my mini-me in personality, Derek is my mini-me in looks (sorry about that) and personality.  He reminds me of myself growing up and at his current age.  I know it’s hard to believe, but growing up I was rather shy.  When I was around my friends, I was the class clown, but in front of people I didn’t know, I was quiet.  In addition, I was very tenacious when I set a goal.  If someone told me I couldn’t do something, I always proved them wrong.  Let’s list some of the reasons Derek is one of my Parkinson’s Disease Heroes, shall we?

1. Derek Is Driven – Derek sets goals and focuses on achieving those goals.  He always wanted to be a chef.  After graduating from Bloomsburg University, he attended culinary school in Charleston, SC, and then furthered his education at The Italian Culinary Institute, earning a Master’s in Culinary Arts.  This is also where he met my lovely, daughter-in-law Molly Bray.  Molly and Derek decided to focus on baking specializing in sourdough products.  During the COVID shutdown, they honed their recipes and are in the process of opening a bakery in Charleston, SC.
2. Derek takes extreme pride in his work – Derek strives to be the best at what he is passionate about.  He wants to be the best chef/baker and produce products that are not only visually pleasing but taste exceptional.  He wants people to draw on people’s emotions:  remembering the smell of fresh-baked bread and pastries, drawing on those memories to put smiles on people’s faces.
3. Derek is very loyal – Derek is very loyal to his friends and family.  He is always there to support people when they need help without asking for anything in return.

These are the characteristics that make Derek one of my Parkinson’s Disease heroes.

Derek and Molly

For more information on living a spectacular life read my article

Parkinson’s Disease Heroes – Coaches and Mentors

I gave you a little insight into my Parkinson’s Disease heroes and how they influenced and impacted my life.  Now, I want to switch gears and focus on Coaches and Mentors.  Are they the same?  If not, how are they different?  What role do they play in affecting your life? Mr. Webster provides the following definitions:

• Coach – One who instructs, trains, or prompts
• Mentor – A trusted counselor or guide

While they are very similar, the key attribute for me that separates them is “Trusted”.  Does that mean I don’t trust my coach?  Absolutely not.  To me, a Mentor allows you to share ideas and thoughts while giving you honest feedback that is actionable.  They share their experience and knowledge with you.  One of the key attributes of a mentor is the ability to LISTEN.  I also remember key learning from a management class I attended.  The instructor said, “You have two ears and one mouth, use them in that order. ”For the sake of brevity, I will share who my coaches are and who my mentors and mentors/coaches are.

•  Brian and Angie Kustanbauter (my Brother and Sister in Law) – These are my mentors.  I can discuss with them whatever is on my mind and they are willing to give me their advice and perspective.  They are very loyal and always provide assistance when I need it and expect nothing in return.

• 

  2. Don and Marlene Dyke(Mentors) – Don and Marlene are my neighbors and friends.  I’ve known them for about 8 years.  At 82 and 81 years old, they have a wealth of knowledge and experiences to share.  They are good listeners and give me a great perspective when I’m dealing with an issue.  They make me think critically about an issue before making a decision.

Susannah Gillespie – Mentor/Coach – Susannah is the Group Fitness Manager and co-developer of the Momentum program at the York JCC.  She facilitates one of the Momentum classes and I train with her once a week.  She is very knowledgeable in not only training but also Parkinson’s and exercise.  Susannah pushes me (okay let’s be honest, tortures me – just kidding) in training to improve my balance, and

• stamina, and improve my sense of well-being.  She is a good listener and very caring and that comes through in my training and during the Momentum classes.  She knows how to get the best out of you. 
  

  

   Susannah Gillespie

 Role Models Alas, we come to Role Models.  Are they any less important than the others?  Absolutely not!  So, what is a role model?  Mr. Webster, our old trusted friend defines a role model as

• Role Model – A person whose behavior is imitated by others.

I have many role models and would love to list them all but, my poor fingers would be nubbs from all the typing.  So I’ll name a few (for the others, please don’t be offended if your name doesn’t appear).

Lori DePorter – While I could categorize Lori as a coach because she instructs the Rock Steady Boxing Program for Parkinson’s, I view her as a role model not only for me but for others as well.  Lori was diagnosed with Young Onset Parkinson’s Disease.  Rather than sit around feeling sorry for herself, Lori became a fitness instructor and Rock Steady Boxing Coach.  Lori is a writer now and publishes

written articles for some of the major Parkinson’s resources: Davis Phinney Foundation, and Parkinson’s News Today to name a few.  She also has a website where she shares her blogs.

Andy Apgar – Andy, like myself, has Parkinson’s Disease.  I had the opportunity to meet Andy about 2 years ago when the Momentum program was launched.  I consider Andy a good friend and role model.  We both have a love of music, but Andy is the professional having been a middle school music teacher.  We push each other in class to give our best and improve.  Andy was diagnosed with Early-onset Parkinson’s Disease and has taken charge of his disease.  He owns Parkinson’s it doesn’t own him.  

Andy Apgar

York JCC Momentum Class – Every member of this group has a story to tell.  We all learn from each other and push each other to accomplish goals we didn’t think we could accomplish.  This has become a community of friends who I consider role models.

Recommended Reading

The Power of Mentors and How to Find One for Yourself – Mind and Meaning -Tony Robbins

Parkinson’s Disease Heroes – Summary

As you can see, who we are and who we’ve become has a lot to do with our heroes, coaches, mentors, and role models.  Patch Adams said, “Transference is inevitable, every human being has an impact on another.”  It couldn’t be more true.  All of these roles listed above have had a profound impact on my life.  Who I am, and how I live my life.  I hope that you will take the time to reflect on your heroes, coaches, mentors, and role models.   Maybe even thank them for helping you if you still can.  Those individuals would smile and feel great knowing they had an impact on your life.