A Letter to Me…Or You.
I see you right now.
Wait, no. Sorry, that sounds super creepy.
What I mean is that I know you are desperately trying to keep it together. You have spent the better part of the last few days guzzling information online, searching for stories of hope and survival while carefully tiptoeing around the tragic ones. Your emotions have been set to spin cycle, going round and round from sad, to scared, to enraged and back again. And you simultaneously want to be surrounded by people, but also left completely alone.
How do I know all of this? Because I am you.
Or at least I was you, a year ago.
That is when I found out that the tremor in my right hand and foot was not in fact a benign nuisance, but instead Parkinson’s Disease. I felt incredibly scared at that moment and I desperately wanted someone to tell me what to do. And not in the “you’ll be fine” or “it’s all going ok” platitude kind of way - but a practical get shit done kind of way.
Diagnosis Day, December 2022
As you know by now, the first few weeks post diagnosis are all about survival. There are no rules except to exist. Watch Bravo (or your mindless program of choice), cry, laugh, sleep, repeat. Some days will feel “normal” and some will seem like the whole world is still spinning while you are standing still. It’s surreal and confusing and you alternate between “this is not that big of a deal” to “my life is over” but hopefully at some point soon, it will level out and you will start to feel a little better.
When that happens, you’ll be ready to tackle some important tasks such as the ones below. It’s not a comprehensive list, but here’s a start.
Find a Movement Disorder Specialist. Not all neurologists are the same and finding one that specializes in Parkinson’s is the most important thing you can do right now. If you find one that isn’t taking new patients don’t give up!
Find a therapist. You will need someone to talk to that isn’t related or a friend
Same theme - find a community. That can be a support group or something more casual but you’ll need a group of people to talk to.
Create a workout plan. Never lifted a weight or run a mile? No biggie! Everyone starts somewhere and you can do it. Exercise is the one thing you can do that will potentially slow progression.
Sign up for a research study or get involved in a fundraising event of some kind. Participating in finding a cure for the disease you have is incredibly empowering.
After you’ve done all these basics, the panic will begin to subside. You’ll get back into your daily routine and you will start to feel like your old self. But let me give you something to else to consider. Another path, if you will.
Remember The Price Is Right showcase showdown? The top contestant was given the option to bid on a package of fabulous prizes or pass it to the other guy. Passing was a gamble because the second showcase was still hidden and could be a total dud. But it could also have bigger, better, more amazing prizes than the first.
Well, your life before your diagnosis is showcase option one. It is a known entity and hopefully a good one. You can, without any regret, return to your previous existence - albeit with your shiny new diagnosis in tow. As many people have told me, Parkinson’s does not need to become your entire identity. It can be just one of a long list of adjectives used to describe you. But what if, in the wake of this life altering news, you chose the hypothetical second showcase?
What if instead of returning to who you were before, you change almost everything about the way you lived?
I know you are thinking that that seems like a terrible idea right now - that what you really need is comfort, familiarity, and stability and I definitely get that. But a year ago, without any real foresight and with no planning, I chose option two and I’m here to tell you that, in every way, I am a different and better version of myself thanks to Parkinson’s.
Let’s talk about how…
One of my favorite lines from a movie is in the classic film We Bought A Zoo. You’re tempted to stop reading because I just described that movie as a classic, but stick with me. The dad, played by Matt Damon, is talking to his son about taking a chance and he says to him “You know, sometimes all you need is twenty seconds of insane courage. Just literally twenty seconds of just embarrassing bravery. And I promise you, something great will come of it.”
On my birthday last year, I had one of those moments. I woke up that day, watched the sun rise over the ocean from the balcony of the hotel we were staying at, and decided it was time to share my news with the world. I’m not sure why that felt like the right moment, but I held my breath and hit the “share” button on a post telling everyone that I had been diagnosed with Young Onset Parkinson’s Disease the month before. It was terrifying for me because up until that point in my life, my social media had mostly included carefully curated pictures of our kids, our dog, trips and delicious meals.
I shared the news of my PD diagnosis on my birthday
As a third of four kids, I spent my childhood flying just below the radar to avoid getting into trouble. And as an event producer, I honed the skill set of planning and prepping the stars, rather than being one. I have always intentionally stood just outside the spotlight. I worried that once I came out as having Parkinson’s people would think of me differently. Or worry about me. Or see me as weak.I was convinced they would stare at me, or even worse, avoid me altogether. And the truth is that all of those things happened this year (that’s a story for another day) but being open and honest about having this disease in that post started a transformation for me. I suddenly felt powerful.
When we got home from that trip, I started working out every day because I read that exercise could potentially slows Parkinson’s progression. Since then I have biked, run, stretched, barred, lifted and swam my way into being the strongest physical version of myself I’ve ever been. I even signed up for a race for the first time in 20+ years and just completed it last week.
I ran my first race in 20+ years and raised $10K for TeamFox
Normally I am reluctant to ask anyone for help. I’m in the “i can do it all by myself” category. But in the wake of sharing my news and the incredibly supportive response I received, I felt braver than I ever had in my life. It emboldened me to ask some well-connected friends for help finding a new neurologist because I wasn’t convinced the one I had been assigned was the best fit. The result was finding a doctor who spent hours listening to us at our first appointment and then radically changed my treatment plan for the better. Over the course of this past year, he has been incredibly responsive to my changing symptoms and I feel like I am in great hands.
Every little step forward I took gave me the confidence to take another one.
A few months post-diagnosis, I created an Instagram page to chronicle my Parkinson’s journey because I didn’t want to flood my friends and family with what I thought would be a lot of medical updates on my regular accounts. What started as a way to shield some people from my Parkinson’s became a large and growing community of people sharing information and support. Putting it out there for thousands of people to see still sometimes feels like diving off the high dive head first, but I’ve learned to embrace the uncomfortable - something I never used to do before.
I have also found a new sense of mission and purpose in my life - focusing on advocacy and awareness and hopefully doing my small part eventually find a cure. I signed up for a groundbreaking research study and I found connections with not one but three major Parkinson’s nonprofits and have been engaged with each in meaningful ways throughout this year. I have raised more than $25K for various Parkinson’s organizations and I’m just getting started!
I am working less than I used to and am focusing more on the things that give me joy - like writing. And speaking of joy, I am chasing it! I do my best to find the humor in almost every situation. I no longer take myself so seriously because frankly, who has the time to be so uptight. :) Most importantly, I have deepened relationships with the people that mean the most to me in my life. It’s my goal to do that even more this coming year.
My therapist doesn’t like it when I use the term “old me” vs. “new me” when we talk about the transformation I’ve gone through this year, but there’s no other way that accurately describes my life pre and post diagnosis. Old me was stressed about everything. She sweated the small stuff, worried constantly about things that were both in and out of her own control, and she wore her busyness like a badge of honor. She was out of shape both physically and emotionally. And was generally unconcerned with her long term health and future.
But something changed inside me the day a neurologist told me I had Parkinson’s. As we drove home from that appointment, in a foggy state of shock, I had a terrifying glimpse of what the rest of my days would likely be. My fiercely protected independence replaced by a need for constant physical support. The body I once took for granted slowly wasting away thanks to a misfolding protein in my brain. My husband forced to transition from best friend and equal, to unpaid and under appreciated care partner. All of this may (will?) still happen but it’s not going to happen without a fight and I am going to enjoy every single second of my life before it does.
This past year has been a time of learning, listening and growing. I did not retreat into my sadness and you don’t have to either. There is a term I have learned this year called sublimation. Basically it means turning a tragedy into something creative or positive and I have embraced this concept wholly. I now live in a state of gratitude - for the things I still can do and for the sense of mission I now embody. I take nothing for granted and I am truly happier than I have ever been despite what I know could be coming. I wish it didn’t take heavy and hard news for me to see the proverbial light, but I am glad I did.
This all may make it seem like the road ahead is easy and I assure you it is not. There have been many days this past year that I have succumbed to the pain and unending frustration Parkinson’s delivers. But as I sit here, a year after my diagnosis, I am truly grateful for the life I have and I attribute that to a disease I never saw coming. ‘
I’ll leave you with this: what feels like a tragedy today could very well feel like a gift tomorrow. There is hope for you, and for me. Choose showcase two and I’ll meet you here a year from now.