An interview with Marty Lukaszewski on Advocacy, July 20, 2023 by George Ackerman, Ph.D, J.D.
Biography
Marty was born in 1961 in South Bend, Indiana, to his parents Tom and Sandy. He was their first-born and only son. They would bring into this world four other siblings, all daughters, and all have been given first names beginning with the letter “M”.
During his youth, Marty was a very rambunctious kid. He would constantly test the boundaries of whatever he was doing. At age two he explored the concept of a ladder only to fall off it at the third rung and receive a few stitches in his head. He tried to take on the family dog, a boxer, and lost, finishing with a big knot on his forehead. At age ten, playing sandlot baseball Marty dove for a ball only to come up with a broken beer bottle embedded in his hand. Needless to say, Marty was on a first-name basis with the emergency room doctors and nurses.
As he looks back on his life so far, his childhood was a good indication of where life would direct Marty. Always curious and wanting to accomplish so much more than anyone he knew; Marty was known as competitive and hated to lose. Playing tackle football in the front yard with a neighborhood friend, Marty made it his mission that he wasn’t going to lose or allow the friend to ever score a point. As a result, Marty strives to succeed.
Marty doesn’t look like trying to win awards in whatever he does. He looks towards self-satisfaction with what he does each day. Often Marty questions, “Did I do the best that I could do?” While he has been recognized by his peers in a variety of areas, Marty says, “It doesn’t beat that feeling at the end of the day when you know you did your best. That is why I teach.”
“It is such a wow feeling when a child ‘Gets It’ for the very first time. When you get a note from a former student who says, ‘You don’t know how much you have impacted my life.’” That is what Marty does as he looks to tomorrow. “I want to continue to inspire, which means I need to be tenacious today as I live with Parkinson’s. I won’t let it bring me down because I hate to lose.”
In Marty’s life, he has owned small businesses including a disc jockey service and a retail store; broadcasted sports on the radio; coached college basketball and other sports on the elementary, middle school, and high school levels; was employed as a chef; has served on alumni and school boards, and today teaches. Marty approaches each profession looking to become the best he could possibly become.
Lastly, Marty believes that he is in the best phase of his life so far. “I have a fantastic partner in my wife. I use that same tenacity in being a good husband, stepfather, and prayer leader in our home. God has blessed me with her, and I am so thankful. So yes, I am humbled to know that in her I have met my match, my confidant, and my soulmate.”
Please tell me a little about your background and what got you involved with awareness.
Diagnosed in January of 2014 with Early Onset Parkinson’s disease, I finally had an answer that had plagued me for over fifteen years. I was determined to continue to live life on my terms, not Parkinson’s. I am a firm believer that when we give in, we are allowing something else to take control, whether it is our minds, bodies or spirit that is yielding. I also believe that since diagnosis, I have been living a blessed life and that these past ten years have been the greatest ten years of my life.
Can you tell me more about your advocacy?
My advocacy is two-fold. First, I have a book coming out in November 2023 that will provide others with a chronic illness – Parkinson’s, MS, Diabetes, etc. – to understand what we do every morning is that we are given a new canvas to paint the picture of our life. It is up to us how we approach it. The book centers around how my faith is my brushstroke. As a result of promoting the book, I expect to speak to religious groups, support groups, and others.
My second advocacy is centered around my service dog. I believe that in living with Parkinson’s that we become proactive, not reactive as this disease tries to rob our abilities. I don’t have many falls because this animal picks up items I drop (she is fairly busy) and ensures that I am walking with balance and straight as I can. I talk to groups within an hour of my home to raise awareness and funds for the service dog organization that gifted my service dog to me and over 800 other clients during the last 30 years.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
As previously noted, I have Parkinson’s. Upon diagnosis I looked at my wife and said to her, “I might have Parkinson’s, but Parkinson’s won’t have me.” As a result, I look to be proactive in this fight. I was an original member of the Rock Steady Minneapolis group, and I served on the planning committee for the Moving Day walk in the Twin Cities.
What type of goals do individuals with Parkinson’s awareness have when working with you?
Like me, they wish to find a cure.
What effect can your advocacy have on an individual with Parkinson’s awareness?
I want fellow Parkies to know that today is their best day, and they can make it look however they want. They hold the paint brush. The world is their canvas.
What would you like to see as a future goal for your advocacy?
I’d love to do this full time replacing my current income. I believe that my message is not only helpful for people with Parkinson’s but also those with other chronic illnesses.
What events do you participate in?
I have participated in various local seminars produced by the Struther’s Parkinson’s Center as a presenter, and as a volunteer on the organizing committee for Moving Day Twin Cities. I also speak to groups such as local Lions clubs promoting service animals.
How does this also assist the caregivers?
Most of these presentations include my wife, usually in attendance, but she does draw a crowd during the moments after the presentation. “I might have the disease, but my wife has the burden” is what I tell my audiences. The fight called Parkinson’s requires a team effort. No one can go it alone. I think some days the effects on caregivers and families are far worse than those of us who are the patients.
How can someone get in touch? What is your website?
We can be contacted through martyandjeanluke.com. Go to https://martyandjeanluke.com/contact-us/ for media interviews and bookings as well as conversation. For more information on the forthcoming book, interested parties can go to https://everydayisacanvasbook.com/First2Know/ to sign up for updates, sneak peaks and other exciting offers.
If you had one final statement or quote you could leave for the Parkinson community, what would it be?
It is the quote that inspired my book. These are the words of the late Craig Sager, “If I’ve learned anything through all of this, it’s that each and every day is a canvas waiting to be painted — an opportunity for love, for fun, for living, for learning…”
And my belief as I walk this journey. “I might have Parkinson’s, but Parkinson’s will never have me. It may take my body, but it will never take my spirit.”