A bunch of you just read that and panicked. What??? NO MORE SELFIES? Especially my mom friends who are only ever in pictures when they flip their cameras around and snap themselves. Proof of life I call it. If we take selfies away, who will know we existed on this planet? Ok slight exaggeration - I think I have about 20 pictures of myself that I didn’t take. In fact, here’s a recent picture Mike took and despite not being able to see my face, you can tell how happy I was to not be the one behind the camera for a change. Oh, and also because of the amazing view of Acadia National Park. Ha ha!

Actually though, the title of this post has nothing to do with your iphone. 

For the past almost eight months since my diagnosis, I have leaned in to myself…hard. Taking the advice of doctors, therapists, family, friends and my closest adviser Buddy (sigh..I miss him), I took some time to really listen to my own heart, mind, and soul and do whatever any of those entities needed to feel better and stronger about where I am and where I’m heading. That meant crying when I needed to cry, sleeping whenever I wanted to sleep, talking about myself and diagnosis, and my hopes and fears as much as I wanted - whenever I wanted to, to whomever I wanted to (sorry Mike). And for you, my few loyal readers, it meant a lot of posts about me and what I was feeling. For those of you new here, feel free to scroll backward.

Focusing so much on myself makes me uncomfortable. As moms, we spend a lot of time putting ourselves last, and while I’d like to say that I chose to do that, you actually have no other option when tiny humans depend on you for literal life. You just learn to prioritize, and that often means you are last on the list. For many, many years, I wore this as a badge of honor - living that martyr life, so it was a real shift for me to give into what I’m calling my Selfie Era. I mean, don’t get me wrong, I have in many ways enjoyed this new focus on myself - especially doing things like joining a fancy new gym. I am in no way suggesting that I will be giving that up, or any of the healthy new physical or emotional habits I’ve developed since December, but, the time has come for me to start turning my focus outward too. 

If you are new to knowing me, or even if you aren’t, or if you follow me on social media, you might think, aside from ye olde PD, I live a pretty great and privileged life - and you’d be right. I consider myself to be exceptionally lucky and I knock on wood all the time. None of that changes in the face of Parkinson’s and in fact, being diagnosed has only made me more aware of how fortunate I am. I have access to the doctors I want to see and the health insurance to be able to see them whenever I need. And despite one doctor downplaying my initial symptoms, for the most part they heard me, listened, and didn’t quit until we found the answer. Post diagnosis, I was able to call on several well connected friends who have helped me find incredible specialists and support teams to make this path that much easier for me. Despite my casserole post from a few weeks ago, the response I’ve received from those around me has been, for the most part, supportive and loving. 

I am acutely aware, though, that the experience I’ve had since December is radically different than most people facing a Parkinson’s diagnosis, and especially women. You won’t be surprised to learn that women get the shaft when it comes to this disease. How? Women are slower to be diagnosed with Parkinson’s despite reporting similar symptoms as men (see initial downplaying doctor above). Post diagnosis, women have less access to, and lower use of expert care. We are not always socially supported - often serving as caregivers (to spouses, parents, kids, etc.) and patients at the same time. And women are less represented in research and therefore are less likely to be a part of finding a cure, or benefitting from it. Generally speaking, I’ve learned, women with Parkinson’s have a poorer quality of life than men facing the same diagnosis. 

The day that I left my neurologist's office, I was handed a pamphlet about Parkinson’s that was covered in images of older men. if there was any woman on there, it was an older one portraying a caretaker. I should have given it back to her and asked where the packet was for the 47 year old working mom? That was my first clue that women aren’t adequately represented in this disease yet. My second was when I came home and searched for a beginner’s guide to understanding Parkinson’s and found the internet littered with older men as my reference point. Heck, even the Parkinson’s For Dummies cover has two men on it. Don’t believe me? Here are just a few of the MANY images/resources online featuring slumped over guys:

And yet, 40% of people living with Parkinson’s are women, and 10-20% of patients have Young Onset - something you’d never know if you just Google Parkinson’s and sift through the results.

Maybe you are asking yourself why this matters. It matters because it is indicative of the the fact that resources for women are not as plentiful as they are for others who are more adequately represented. According to this article about Dr. Allison Willis at Penn Medicine, “women, minorities, and rural-dwelling Parkinson’s patients are overwhelmingly less likely to be treated by a neurologist or participate in research. This disparity directly affects outcomes. People not treated by a neurologist were more likely to be hospitalized for adverse drug events or Parkinson’s disease-related conditions, more likely to suffer fractures, more likely to spend time in a long-term care facility, and had lower survival rates.” The images you find online aren’t a coincidence. If you are newly diagnosed and all you can find is information that doesn’t feel relevant to you, are you more likely to give up? Possibly. If women don’t see themselves as part of the “problem” that is Parkinson’s, then they likely are not going to be part of the solution.

This is why I’ve decided to add my voice to those calling for women to be equally represented in research and care - leading me to enter my new stage in life that we’ll call my Advocacy Era (TSwift - can we make that a thing???). It starts with what I hope will be the first of many collaborations with the Michael J. Fox Foundation (MJFF) where I’ve written a guest blog on their site and recorded a video for their social feeds encouraging participation in research. Side note - when I tell you that I had to re-record that video137 times, I would not even remotely be exaggerating. Who knew memorizing something and trying to say it in 60 seconds with a straight face would be so difficult?  I have spent my entire career writing speeches for other people and guiding them from behind the curtain like a less sketchy Wizard of Oz - so being in front of the camera is terrifying.

Anyway, in the video, I briefly talk about my journey with Parkinson’s and the reason I joined the MJFF Progression Markers Initiative (PPMI) study. This is the landmark study that uncovered the biomarker for Parkinson’s which is a fancy way of saying that it will help with earlier diagnoses, better treatments and faster drug development. Anyone can join the study - even if you don’t have the disease - but it’s especially important for those who have been recently diagnosed to sign up.  

Don’t worry, I’ll still be on here sharing my ridiculous stories and antics with you all. Like for instance how a tree fell on our house the day before we were set to go on our little Maine getaway a few weeks ago but we decided to leave town anyway. What a year it’s been! Here are some pics of the mess and some good news it seems to only have done minimal damage to our actual house - though the same cannot be said for our shed (RIP!)

And I’ll share with you details of our newest bestie, a puppy named Bean who we adopted 10 days ago and who is ruling our house in the best possible way. She is feisty and funny and has brought joy to our household…and lots of yelping too. We still miss our Buddy but think she’s gonna fit right in.

In addition to continuing to tell my own stories here, I’d like to start using this blog to share information and inspiration from others too - interesting people who have Parkinson’s or caregivers or those working to find a cure. I’ve met or learned about so many amazing people in the last few months and I think you’ll love to hear their stories too. I think I’ll start with Ryan Reynolds, for purely altruistic reasons of course. We could all learn a lot from his family’s journey with this disease right? (sorry again Mike) so let me know if you know anyone that could connect me to him. (I’m laughing out loud while I type that),

It only seemed fitting to mark the end of my selfie era (NEVER!) that I have some pics taken by my immensely talented photographer friend who makes me look like a rock star despite it being 110 degrees that day. Getting these caused me to do a little revamp on this site and I hope you like it. I only wish I had her take me in front of our big old tree before it came down. And yes, this is how I look whenever I write these posts - not at all in my pjs in a tent in the middle of the woods in Maine or on the Pennsylvania Turnpike on our way back from dropping our daughter off in South Bend, IN.

So stay tuned for my next era friends! Sign up here so you can be the first to know when I meet Ryan. And while you are waiting (it could be a long, long, longggg time) go check ou the Michael J. Fox Foundation and their landmark PPMI study, click here.