“We can’t always choose the music life gives you, but you can choose how you dance to it.”
That saying was a gift and it sits on my kitchen counter. It is next to the sink so I read it numerous times throughout the day. The music is life. All of it ….the good, the bad, and everything in between.
Six years ago, the music was hard to hear. It was there but I didn’t want any part of it. I was 45 years old and a doctor looked at me and said, “I think you have Parkinson’s.” The music stopped and so did I.
I did not want to accept the possibility of living with “a degenerative brain disease to which there is no cure.” I have never shared this but I distinctly remember a conversation I had with my husband. I said, “I can’t live with it. I don’t want to live with it.” I actually said those words out loud.
Over the next three months, I was in medical limbo with no answers until a diagnostic MRI indicated Spinal Compression. Regardless of whether or not I had Parkinson’s, my spine needed to be fixed. Surgery was scheduled and I had a small hope that my spine was the source of my problems. On the night before the surgery, I tried to distract myself with laundry. I began sorting and pairing the endless unmatched socks in our basket. Suddenly, it hit me – I was having surgery. Serious surgery and I had said, “I don’t want to live with it.” I decided to have a frank conversation with God. I sat on the floor, cried, and said, “I didn’t mean it. Don’t let me die.”
He heard me…I didn’t die. However, a few weeks later, I did get my Parkinson’s diagnosis. I was not shocked, but I was scared. Looking back, I didn’t realize it at the time, but I was not the only one who was scared. My friends and family were scared for me. I was depressed and lost twenty pounds. My diagnosis became theirs as well and we began our journey (maybe it’s a detour) of life with Young Onset Parkinson’s.
There have been many twists and turns along the way, including being diagnosed with Hashimoto’s Disease. This was another diagnosis that has changed our lives, especially our diet. My husband has been a trooper and done most of the changes with me. As for the Parkinson’s, six years later, I am doing better than I ever imagined. I am living my life with an incredible support system and we all have learned some lessons along the way. One of the most important – the music is playing. You need to stop, breathe, and just listen.
I have learned to listen to the music and dance to it…literally. Dancing is a weekly date for my husband and I. Who knew a Parkinson’s diagnosis would make us start dating again? An unexpected twist – a good one! Boxing and writing are also unplanned changes in the choreography of my daily life. They all started as tools to manage my symptoms, but they have become so much more.
Boxing led me to become a Rock Steady Boxing coach and a personal trainer. My fellow Parkinson’s warriors and fellow coaches are family to me. The most recent addition to my toolbox is writing. It has given me a platform to share my story and my passion for Parkinson’s awareness. This time, it gives me a chance to share what makes me “unsinkable?”
For me, the answer is “who” makes me unsinkable? We all have one hero that we take for granted. For me, that hero is my husband, Mike. I would not be where I am today without him. This time, he gets the kudos and it’s long overdue.
We went to the same high school and began dating when we were 18. We attended different colleges and were married when we were 23. We have three boys – Adam, Ryan & Zachary. We were busy. Life was a wonderful whirlwind of activities and was moving along. Then life gave us a detour…Parkinson’s but we kept moving. Our boys have seen us face this diagnosis together and how Mike and I have grown closer as a result of it. Mike’s reaction to my diagnosis played an important part in raising three incredible young men.
The boys have grown and flown. Our life as empty nesters is not the one we planned but it is ours and we own it. Life is still rolling along and we are rolling with it – I just roll a little slower now. When you are married to your best friend, the detours in life can be adventures, and I hope ours are just getting started.
We didn’t choose the music but we choose how we dance to it…together, one day at a time.
I am not unsinkable but WE are!
Inspired by Lori’s story? You can find her here: