Lessons from my mom that help me in life with Parkinson’s disease
My late mother imparted powerful wisdom while navigating cancer
With Mother’s Day fast approaching, it makes sense that I’ve been thinking about my mom a lot. She passed away from pancreatic cancer more than 30 years ago, when I was just 17. Even though that was long before I was diagnosed with Parkinson’s disease, she taught me many lessons that have helped me navigate through my chronic illness journey.
Here are a few of those lessons.
March to your own drummer
Pancreatic cancer is tough to detect early, and even today, it has pretty dismal survival rates. At the time, her case was treated with surgery to try to remove the cancer before radiation and chemotherapy. Before she went in for the procedure, she pulled me aside and said, “I know it isn’t easy, but keep marching to your own drummer.”
She meant that she knew life wasn’t always easy for me. I was a high school theater freak, a nerd, and deep into my early ’90s grunge phase — ripped jeans, flannel shirts, Doc Martens, and all. She knew the secret that no one in high school understands: What makes you feel like a freak is what’s going to make you interesting when you grow up.
But it was about more than surviving those awkward teenage years. I still enter the world awkwardly. I shuffle when I walk, sometimes make random movements with my arms, my facial expression can get stuck, and my speech is sometimes off. My disease can be invisible at times, but even when others don’t notice it, it can feel pretty awkward and lonely not to be in total control of my body. Her words inspire me to get out there every day, no matter what people might say.
Energy is a gift
Parkinson’s disease is a constant battle against fatigue. I’ve described it before as a battle between your mind and brain. Being in this continuous posture of battle is exhausting. Getting through the day can feel like a war.
When my mom was going through her cancer treatments, I remember her talking about her fatigue and frustration. She said, “Every day you’re given a box of energy. You get to decide how to use it. You can use it to live your life, or you can waste it on nonsense.”
I think of that often when getting ready for a big event or before we travel. These kinds of outings cost me energy, so I’m selective about them. But when they’re important, I’ve learned to marshal my energy to be there and enjoy myself. Sometimes that means saving my energy by wearing an outfit that’s easier to put on and move around in, and sometimes it means saying no to events that will sap my energy for too little return.
Sick or not, we all have to decide where we spend our energy. Even at her weakest, my mom would pull herself together to spend her time and energy with friends and loved ones. It’s like that line from “The Shawshank Redemption”: “You can get busy living, or you can get busy dying.”
Time doesn’t matter
My mom’s cancer diagnosis gave me a new perspective on life, as I realized that things could change instantly. My mom died less than nine months after she was diagnosed, so I grew into adulthood with a sense of how short our journey can be — and is. So when my diagnosis came, I was left with a sense of urgency not to waste time.
But mom had a lesson to help here, too. When she was told she had late-stage pancreatic cancer, she and my dad stopped wearing their watches. They knew the doctors couldn’t predict how much time she had, so they were determined to enjoy it, whether it was a day or a year.
Parkinson’s disease progression is so uncertain and individual that I don’t even ask my neurologist about the timeline. I tell her what symptoms are bothering me, and we adjust my deep brain stimulation settings or switch up my meds until I feel better. I want to enjoy my life and not waste any time; nothing a doctor predicts will change that.
My mom was the best. Even though she left too early, her life and death shaped me and prepared me for this wild, unexpected, and blessed life I have. Whether your mother is with you or not, I hope you can celebrate the moms and mother figures in your life this year.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
About the Author
Ali
Absolutely! Just one more important factor to add. My own lifelong experience prooved my belief That we all are born into this world with purpose that is unique to every one of us. Our body and mind is the product of phenomenal and miraculous design that is built to lead us towards our purpose that we are born into.and the secret is that us not only meant to take care of our health and pursuing our enjoyment of life our body and mind are built to take care of our health and well being only if we stay in track in pursuing our main purpose that we are born for, yes during first early years of growing up is the period of joy and learning for lessens and experiences that is consistent with our purposeful life journey.And should we arrive at a dead end that we feel there is nothing else is left to do other than taking care of our iwn health and day today enjoyment, it would be the place that our core subconscious mind realizes that there is no reason left in taking care of our health and lifesaving organs as before, and the purcipice of declining in our aging complications stars to take over without our uikt in natural remedial energy Tobe at helm any more.
I was diagnosed twice already in my younger years with advanced incurable Cancer diseases given a couple of months to live and a few weeks on second occasion by top credible specialists at the time and now after a longer than 3 decades later I am still alive keep doing my bits day to day towards my purpose that I know being born for, still having stark scars of those nasty illnes in my body all along. For not thinking or caring primarily of my health and own enjoyment and rather pursuing my role and purpose to make a difference to a better world for all forms of life other than myself. The least to mention here. Thank you fir your post learning about your journey of your happier life. GodBkess
Steve Hembry
Thank you for such a special story. I love the ‘ marching to your own drum’ advice. I did it in the early 70s and now with PD that I and my wife both have it’s so helpful. Keep up the good work!
James Kiepert
Does Levodopa hurt your heart?
Therese Swartz
Your mom must have been quite a lady! Thank you so much for sharing her wisdom. It touched my heart; it was just what I needed!
Marcia
What a wonderful article!! This mother truly was an inspiration and so is this author. I don’t dwell on my Parkinson’s, which was diagnosed eight years ago at age 66. I have learned to truly enjoy every moment and stop looking ahead. I am lucky to be retired and despite, or maybe because of, the Parkinson’s, I finished writing book a few years ago. I still pretty functional, which I am totally grateful for. One of the first things my Neurologist told me is “you are not Parkinson’s, it is just a part of you. “ If you can focus on all of the good things that make you you, it will be a much easier journey. Thank you for writing this story.
Lorrie Lykins
What a moving and beautiful tribute to your mom, Mollie. 💙
Donna Katser
Positivity sure makes life easier to navigate! Also recognizing that one has a choice in the selection of friends/folks one chooses to surround themselves with sends a powerful message to others and the self’
Patrice Rifkind
I really enjoyed your article. My mom is also gone, but I had much more time with her than you did, and I also have Parkinson's. I never thought of her lessons as applying to me now, but it is a great concept. She also did not get to see me be diagnosed, she would have been disappointed that something like this happened to me. She always thought I had an angel in my pocket who was allowing for my positive adult life. I will need to review her lessons to encourage myself to continue exercise and coping with life.
Judy Hayen
Thank you, Mollie for this helpful article. My husband has had Parkinson's for 15 years. I myself have a disability and several chronic conditions. You have lifted my spirits and given me things to think about as my husband and I navigate our journey. God bless you.