About the Author
Mark Rubin, J.D., who chaired NPFs (penultimate) 5th Annual Young Onset Parkinson’s Network Conference, was first diagnosed with Parkinson’s in 1997, though it was not put in his medical record until the next year. He continued his practice as Associate General Counsel, American Dental Association for about a decade longer, before retiring on disability at age 50, or what his nephew would call two cards away from a full deck.
Five true-life moments for me:
1. Awareness (Mom)
I knew in the mid ‘90s that I probably had PD. After all, I was a second generation Parkie, my mom already having struggled for almost two decades with PD and other things on her plate. To the end, mom was family oriented, a creative…art, dance, laughter, community building…always stressing the importance of having a good heart. Yet I knew the signs and symptoms…and what was likely in store.
So I eventually bit the bullet and sought out the best movement disorders specialist I could find for me…one close enough to see regularly, with solid, cutting-edge western medical credibility, who also was a believer in effective complementary (then called alternative) treatment modalities. I finally found her! Here’s how I vividly recall the first visit:
She (briskly, upon entering the exam room): Why are you here?
Me (equally direct): Because I have Parkinson’s.
She: Let me be the judge of that.
She (upon returning to exam room): You were correct, you do have Parkinson’s.
Me (from a place deep inside, that I didn’t even know existed): Tell me my life isn’t over.
She (promptly, directly, confidently and looking me in the eye): Your life isn’t over.
I instantly decided she was right and believed her, surprising myself a second time. And boy was she, ever! Thank God on all counts.
I was next blessed with finding a wonderful new primary care doctor with similar clinical qualities. A gentle, dedicated, caring man, with a big heart. He stood by me for more than a decade (until I moved), pointing the way to wellness but watching me decline over the years, knowing that out of a fierce desire to do as much on my own as possible (ok, some might call it foolish pride), I would often, sometimes rudely, refuse offers of help.
One day, when running late to an appointment, and realizing my body, especially my fingers, was going to make me even later, I used the brilliant but not fully time-tested idea of bringing my belt with me to put on later. After all, my jeans were tight, just out of the dryer. But a later opportunity to buckle up didn’t come, and by the time I reached his building I was in my (not too!) fastest paced full PD walk posture while doing my best to hold my pants from falling down.
My wonderful doc held it in the entire exam, but seeing me struggle with the belt, on the way out, gently asked “Mark, would you like me to help you loop your belt before you leave?” I finally relented and said yes. A few minutes later, out of his door, my pants are falling again, though not still at risk of falling all the way down. He had missed a few loops! Guess we all should do as much for ourselves, and give and accept as much help to and from one another, as we can!
Shortly after the 5th Annual YOPN conference, I met with a very newly diagnosed Young Onset person. He had attended and was on overload, freaking out and fearful; I was trying to empower him and buoy his spirits, without much success. We were eating at Chipotle, and while I was filling up a second cup of soda, thinking about another newbie whose overall attitude had seemed dour, how to help this fellow at lunch hit me like a brick. I told him [your name here]: “It just dawned on me that the question really isn’t whether the glass is half full or half empty, the key is that each of our glasses is refillable, and we can all choose whether and when to refill our glasses, with what and how much.” For me, I will always remember that moment as the Chipotle Epiphany.
What prompted this “bio” is what I found myself thinking, even moreso feeling, upon sending NPF’s wonderful Communications Director, Leilani Pearl, the final version of the Legal, Financial and Insurance portion for inclusion in NPF’s launch of its new and improved website. I share it in closing and with a thanks to whoever may be reading this now.
Leilani, thanks for the opportunity and for shepherding this through. It's beautiful. It's exactly what I wished had been available as a starting point for my mother when she was diagnosed with PD three-plus decades ago. It's what I always hoped to share with my fellow Parkies of today, but could never identify in a thorough or consistent account, especially from our perspective.
It's what I never knew that I knew or could know, or do or even imagine or comprehend doing, for a community I never anticipated being in or wished to be part of. Born in a place where an uncharted path seemed to end, prefaced by a period of caring for three significant others in similar transition, and shielded only by old tools doing their limited best to learn necessary new lessons, none of which could have been developed on and/or used in a job, many of which were conceived and pieced together after middle of the night (or after nap) awakening that are not uncommon among us, and during moments of energy and joy surfacing amidst periods of loss, doubt, limitation, lack of clarity, variability and despair, which I suspect even the bravest and cheeriest among us share.
It's something that I could never have done, even in my prime and clearest days, without the support, challenge and love of those who saw that capacity in me (thanks to you all, especially Sue, George, Andy, Howard and Beril, reinforced by Karen and Diane), or without the contributions of my teachers and colleagues (especially LeiAnne, Scott, Jeff and the great team at DOJ) and of experts in the field who gave freely and generously of their wisdom and experience, making contributions and edits that clarified my thinking and transformed many of my blind spots, borne of limited experience increasing impairment, seemingly into strengths. And, of course, faith (thanks to all).
And most of all, it is a true blessing, a chance to turn nothing into something, to create rather than decay, to contribute purely and from the heart, and to hopefully touch lives. Rare, these opportunities, and cherished, all.
It is, I am sure, far from perfect. But it is a beginning.