Today is World Parkinson’s Day which feels like a good time to launch this blog. I was thinking of naming it “Parkinson’s…but make it cute!” but I decided to go with STILL ME for now. If I’m being completely honest, at just four months post diagnosis, I’m not sure if I’m completely ready to embrace my new status as a young onset Parkinson’s patient. In fact, plenty of well-meaning people have gently suggested I not let this disease become “my whole identity” which means I am compelled to do exactly the opposite, just out of spite. I’ve lived my entire life out loud. I have very few secrets and I wear every emotion like a badge of honor. Discretion and reservation have never really been my thing…so let’s do this.

This is me. I’m Allie. I’m a woman with young onset Parkinson’s. That makes me one in a million right?

Since sharing my news on my birthday, the question I get asked the most is, how did you find out? Fair question and in another blog, on another day, I’ll share the exact details of how we got here. But for today, let’s start with the day it was diagnosed. Here are me and my husband Mike waiting for my neurologist. Still hopeful…still in denial maybe. Luckily, my botox was on point.

You know that part of movies when someone gets bad news and the sound changes, or the tempo slows? Everything becomes muted and blurry and super dramatic. I always feared having to go through that kind moment, thinking it would come with a knock on my front door in the middle of the night or in the trauma bay of a chaotic ER. (I know…too much Grey’s clearly). Anyway, mine came in a slightly less dramatic way while sitting in this beige, doctor’s office two days before Thanksgiving. That’s where a very blunt, young neurologist blurted out “Oh yes, I’m sure it’s Parkinson’s” when I questioned what she had just said. In that moment, at 47 years old, while she kept talking and Mike slowly rubbed my back, the tears started streaming down my wrinkle free face.

The only thing I could hear in that moment was my own voice in my head asking the same question over and over: Is this the end of the me that I have spent 47 years becoming? The feisty, sometimes funny (I am Canadian after all) working mom and wife who has spent every day dreaming of her future surrounded by grandkids and sitting on the beach? A future that I can assure you did not include a debilitating, incurable neurodegenerative disease.

How long, I thought, will it take, exactly, until I am no longer, still me?

Flashes of my new future scrolled through my brain. Big questions like whether I’d be trapped in a writhing, pain-ridden body led to more trivial ones like how  the hell will I get to Target if I can no longer drive? But the scariest, tears inducing question that I couldn’t silence, was how long would I get to be the me that my family – and especially my husband and kids – know and love?

The mom who begrudgingly goes on every roller coaster and happily never misses a soccer game. The independent wife who is best friends and equals with her husband and not someone who needs his constant care, and literal feeding. The nonprofit consultant who was finally achieving success on her own terms? How long would I still be fun to be around and not a burden? Was it twenty years? Ten? Just a few? Less?  I knew my doctor couldn’t answer that so I didn’t even ask.

We left her office and wandered around Whole Foods in shock and disbelief. We picked up our Thanksgiving turkey and I couldn’t help but feel that the helpless, headless guy in our cart knew exactly how I felt in that moment. Like, how the hell did I end up here? We muddled through the holiday but those were awful days full of fear and sadness. All I wanted this past Christmas season was to go back to before we knew the truth about what our future could be.

The internet is littered with “before” pictures. You know, the images of hopeful, happy humans, oblivious to the battles that lie ahead. I have always been fascinated by them. Searching backwards to find their last post before sharing big, sad or scary news. I analyze them for any trace of knowledge of what their life will soon be like. Who were they before cancer, or ALS or losing a loved one? What was their whole life like before becoming an after? I recently saw a Tweet from a young widow named Jamie Lee Smith who had lost her 41-year-old husband to ALS. Their black and white wedding photo stopped me in my tracks. They were the very definition of young, handsome, and strong - he even had his own fitness business. Two years after his diagnosis, after his brain and body betrayed his own hopes for a future, Scott was gone and I couldn’t help but wonder what his lovely wife would give to go back to her before.

Reading their story made me think about this moment I’m in right now - no longer the “before” since I obviously know what’s happening to my brain, but still relatively asymptomatic. I am in a bubble right now. So what will I do with my time before it bursts? Well the first priority is to keep the bubble in tact for as long as I can. Having spent the last ten years of my career working for various brain health nonprofits (oh the irony), I am doing all the things I’ve learned I should…exercise, healthy eating, physical therapy, various meds, etc. I even started running again (help me!). I will literally do anything at this point to stay me…or maybe even become a better version of myself. But let’s be honest, it’s a race I can’t win and that fact brings me to my knees on more days than I’ll admit. Consider my goal though to die at the same age as my great grandmother Maude, who at 105 would wake up every day and declare “damn it!” when she realized she was still alive. (She was funny too. Also Canadian).

Writing has always been cathartic for me. So I’m launching this today without a tremendous amount of thought about what it will become. The goal is to start by getting some of what’s in my brain on this page to make space for more dopamine production.

I’d also like to someday create a community - especially of other young women (and men too!) who find themselves in this predicament or a similar one. A place where we can connect with each other and maybe even find some hope or humor in whatever we are each going through. I want to tell the stories of others who are fighting to stay true to who they are during a crisis. Even better, maybe I’ll share stories of how people have adapted and grown to become better, stronger more grateful humans when the shit hit the fan.

Right now, if you Google Parkinson’s Disease, you will find a plentitude of images of hunched over older men - feeble and frail, seemingly at the end of a very long life, perhaps even grateful to have made it that far. If this is what most people think of when they think of Parkinson’s, you can understand why there might be a lack of urgency in the fight to find a cure. Or for example, why Congress has failed to pass the National Plan to End Parkinson’s Act. But the prevalence of Parkinson’s disease in younger adults is on the rise. We need to know why, and we need a cure. Representation in that fight matters and that is why I plan to do my small part, including using this site and social media, to challenge the notion that Parkinson’s is a “normal” part of aging.

I know that sharing this journey I’m on will not be perfect…because I am not perfect. I will say the wrong things at times, miss the obvious answers at others. But if the protagonist of the current Parkinson’s story is a hunched over old man and the villain is an incurable, neurodegenerative disease, then I will gladly accept the challenge of becoming a Parkinson’s anti-hero.

“It's me, hi, I'm the problem, it's me. At tea time, everybody agrees. I'll stare directly at the sun but never in the mirror. It must be exhausting always rooting for the anti-hero.”