Our son, Ryan, attended the dinner at the “ALL IN” Conference in December. He listened to the keynote speaker, Larry Gifford, as he presented the Parkinson’s Community in a way that showed our strength and tenacity. At the end of the evening, Ryan told me I had to travel to Barcelona, Spain, to attend the World Parkinson’s Congress (WPC) in July. However, he was getting married in July, so I had no intention of going anywhere. Fast forward seven months, and my husband, Mike, and I were on a plane to Barcelona, Spain.
Mike went as my care partner but also my “life” partner. There is no natural way to separate the two, but you find a way to balance them. And, at this point in life, he is my sidekick in my Parkinson’s World. He is Mr. Lori – the nickname he earned when he attended the ATMRD Conference with me in June.
The expectations of a 3-day Everything PD Congress were quite uncertain. Mike bought a new book and brought his iPad. I expected to find him in a quiet corner reading most of the time.
Except, the plan changed somewhere, and I was not in charge of it, nor was my PD the catalyst for it. It was the atmosphere – everyone wanted to learn, and it was contagious, just as it was back in December when Ryan realized how empowering the WPC would be for me and Mike and encouraged us to attend.
We were together for many sessions initially but decided to venture out independently to pursue our interests. When we found our way back to each other, we swapped stories. Mike attended sessions for care partners and topics that he found interesting while I presented my poster and workshops in the PMD Alliance Support Group Leader Lounge. While we both learned more than we expected, Mike learned more about his role now and how it will evolve as life with PD progresses.
Just as it has been since life with PD began ten years ago, care partner and patient, two voices, two journeys, but bonded together by Parkinson’s, never getting too far apart, and never losing sight of each other. Yes, it sounds cliche, but we always find our way back. Sometimes it involves using an app on our phones, but the sentiment is there.
Over the last ten years, we have learned that Life with Parkinson’s is much like navigating a river. The river is always there, but the ebb and flow of it is everchanging. There are days when the river is predictable, but others when we cannot navigate it. We hold on because we know that the ebb and flow will change in our favor if we are patient.
Tethered together, we weather the storm. The scars we get along the way make us who we are. They represent the battles we’ve won and those we have lost.
Until next time, we leave you with a favorite from the opening night ceremony. It’s for all of us…people with Parkinson’s, our care partners, and the dedicated healthcare professionals who give us hope for our future.
“I am brave, I am bruised.
I am who I’m meant to be, this is me.
Look out ’cause here I come,
And I’m marching on to the beat I drum.
I’m not scared to be seen.
I make no apologies. This is me.”– The Greatest Showman
Sincerely,
Lori & Mr. Lori
Two voices, Two Journeys, Tethered Together
