Hi friends! I hope everyone had a wonderful Thanksgiving full of too much food and maybe just a little too much family. Ha ha! Ours was filled with love and laughter and for that I am grateful. I know from personal experience that the holidays aren’t always a Hallmark movie and for many people, including some of you reading this, the holidays are very, very hard.

*The day we found out I had Parkinson’s - November 2022*

This weekend was the one year anniversary of the first time anyone told Mike and I that the tremors and other symptoms I had been experiencing for two years was very likely Parkinson’s Disease. Two days before Thanksgiving 2022, to be exact, was the day that a Movement Disorder Specialist told us that she was confident I had PD. It was a really, really hard holiday last year - full of fear and sadness and putting on brave faces for those that didn’t know yet, while quietly crying when no one was watching.

Going into this year, we were intentional about replacing the memory of those anxiety filled days with new ones. Not putting too much pressure on ourselves to make it “the BEST Thanksgiving YET” but still finding joy in the small things. It’s a concept I’m not always great at, but this year I really focused on enjoying the little moments. The quiet of getting up and cutting celery and mushrooms for the stuffing while watching the parade. Painting wooden Christmas ornaments and visiting a lantern festival in town. It was very chill and filled with good, new memories.

There has been something in the back of my mind, and on my heart, for most of this year and especially these past few weeks - and that is complicated gratitude. It’s hard to escape that word at this time of year. It feels like everyone is talking about what they are grateful for and that’s a good thing. For me, it’s taken on new meaning in the wake of my diagnosis. More than ever in my life, I am grateful for the people around me that I love. Mike, my kiddos, my parents and siblings, and extended family and friends. I am so incredibly lucky to be loved and supported and lifted up. But there is a bigger issue of gratitude for me that is more complicated and that I am somewhat wary of talking about…but here goes.

More than once, when I have told people that I was diagnosed with Young Onset Parkinson’s Disease, I have heard the response: “Well, of ALL the things you could get, Parkinson’s is the best of the worst.”

It’s a response that has historically made me bristle. It usually comes from someone who has never had to deal with Parkinson’s directly, or sometimes from a very smart doctor who has seen the worst and can comfortably, if sometimes coldly, say this isn’t it. But whenever I hear it, and I think of people who have been dealing with this disease for decades, who have been ravaged by the pain and incapacitated by the dyskinesia, or rendered unable to walk, or swallow, or live a “normal” life, I take umbrage to this statement. It’s definitely on my list of “what not to say to someone who has just been diagnosed with Parkinson’s”.

But here’s the thing, they aren’t completely wrong.

I know, I am a walking contradiction but keep reading. If given the choice of a lifetime of pain and tremors and disability, and not having the rest of my life at all, I choose Parkinson’s. I know that I may feel differently in 40 years if I get that far, but today, looking forward, I am grateful that I will hopefully be around to see the milestones in my life, if not exactly the way I had envisioned. It’s somethng I do not take for granted, but it’s complicated.

We have all lost people in our lives and as they say, none of us get out of this thing alive. But some of us get dealt a very bad hand at a younger age. In the past year, I have met several people who have terminal illnesses who are bravely facing their shortened futures with humor and transparency and I am in a constant state of admiration and awe. I would never be so crass as to ask them this directly, but I imagine if they were given the choice of a lifetime of Parkinson’s or a shorter battle with a terminal disease, they would choose PD. This might seem obvious…maybe not, but it’s not lost on me that I am one of the “lucky” ones.

There have been many times this year that I thought of my friend Laura. She and I became fast friends because our kids were the same age and on the same swim and soccer teams. We spent countless hours together on the side of a pool or soccer field. We bonded in the way that mom friends uniquely do. Before we met, she had battled and beaten breast cancer. But a few years into our friendship, it came raging back. She died in March 2015 at just 38 years old, leaving behind her two little girls and her young husband. A few weeks before she passed, we were sitting in her basement, talking about redesigning it, and she said her biggest fear in dying was knowing her girls would have to live without her. She wondered who would do their hair for “crazy hair day” at school (something she was so good at). We cried talking about it and I assured her we would never let them forget her - a promise I try to uphold to this day. She no doubt is beaming down on them both - strong, beautiful amazing girls.

I often wonder what she would say about my situation if she was still alive today. No doubt she’d be empathetic and understanding and loving. She’d bring me disgusting healthy food items I’d pretend to eat. But would she also remind me of how lucky I am to be facing a disease that isn’t technically fatal? I think she might.

I would probably protest - telling her about the ever present pain I’m feeling or the more than a dozens pills I take every day, or the constant battle against the rigidity and tremors, or any of the other issues I am facing right now. She’d of course already know all of this because she was the best kind of friend who checked in regularly, but knowing her, she’d gently and graciously, remind me that I am strong and determined and that I will continue to fight to be here for the future. And she’d be right.

A few weeks ago, I posted a video posing the question of whether or not you could ever view the hardest thing in your life as a gift. Could you ever imagine thinking of being diagnosed with Parkinson’s as a good thing? It’s hard to imagine right? Some of the messages I got after posting that assured me that many people would not agree. But in this past year I have found a sense of purpose and mission that I would never have had without it. And my perspective on life has changed radically because of it. I truly no longer worry about the small stuff and this past Thanksgiving was proof of that. Nothing annoyed me - certainly not in the way that family gatherings may have triggered me in the past. And so, yes, I see Parkinson’s and the clarity it has provided me with, as a gift.

The gift of perspective has also given me an increased dose of empathy. And my heart hurts for those that have harder situations than me. To those that are facing terminal illnesses, or ones that will rob you or your loved ones of the life you love, know that I see you and send you my whole heart. You are not alone and you are not forgotten. I do not take for granted this life I live - and I won’t for as long as I get to live it.

Below is a blog post I wrote shortly after Laura passed. I miss her.

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DEAR LAURA…

"I hope you will tell everyone what is going on. I wouldn't want anyone to think I'm antisocial. :)"

That was the last text you sent me. I yelled at you for texting me when you were supposed to be sleeping. I told you that your friends had organized a fancy shoe drop off instead of a meal delivery service for you since you weren't at the party to weigh in.

I couldn't sleep on Monday. I sent you this in the middle of the night "Not sure if you have your phone and hopefully you are sleeping. But I can't so I thought I'd just send a quick note letting you know I am thinking of you and praying you will get better. I love you to bits and pieces my friend. Be strong. xoxo." It was a serious note from me for a change and I awaited your "Shut the hell up, I am FINE" response. But it never came. You were already gone.

People keep asking me how long I have known you. Three years but it doesn't matter. You were like a little sister. I tell them how Ava and Lauren were on swim team together at the pool and how she kept bugging me about a play date with her new best friend. She pointed you out at the pool. You were wearing that ridiculously gorgeous green tankini and serving the girls kale chips from their matching monogrammed beach bags. I was soaking wet, in a worn out old bathing suit, and ordering pizza for the tenth time that summer. "COME ON Ava! That's the mom?" I walked over, trying to fix my matted, wet hair and get myself together. You gave me a smile and a hug.

By fate, or miracle, the girls both made travel soccer and were put on the same team. I met your husband Jeremy and I realized why you liked me. He was loud, pushy, sarcastic, a smart ass, fast driving, Mercedes loving guy...we were kindred spirits he and I. And like a light bulb, I realized that you were just like Mike. Quiet, calm, strong, focused, could care less about cars except when you were at a soccer match and wanted to stay warm. And that is why I loved you.

You were strong back then. We sat together at every game. Like the muppets Waldorf and Statler watching our girls play. I yelled. You led by quiet example urging me to shut up. We talked about school and camps and design and our respective Cancer battles. Mine a joke. Yours impossible. You told me I should go with the dark floors in our house but warned me they would always be dirty and I'd have to vacuum every day. I thought you were kidding. You bought me a Swiffer sweeper.

We watched Bobby and Claire run around together. Then we watched Claire kick his butt. Regularly. They talked about getting married one day. We joked about being in-laws. We loved that idea. You got sicker last year and things changed. I complained about the heat at the pool and you told me I should try wearing your hair hat. I told you that not one person would care if you took off your wig in the heat. You said your girls would.

I found delicious healthy organic food recipes. And then made them for your kids instead of my picky ones. I thought you only ate really good and disgusting looking foods but then you and I raided your kids Halloween candy when your chemo diet demanded sweets.

In November, we sat in your new basement together. The basement I helped you decorate when we went to Target and spent $500 on pillows and a little red table. Jeremy told me to stop spending his money and go away. I skipped away and told him I'd be back to do the office. We never got there.

We sat there that day after a particularly hard doctors appointment and you told me you were scared. You told me you were worried that the girls would be angry at how unlucky they had been in life to have a mom who was sick and who may die. You told me that you felt really guilty about that and I told you you had to let that go. Then we broke into "Let It Go" at the same time.

You never complained except about my restaurant choices and the smell of food. You never went out without makeup. I picked you up at 6am to go to chemo and you were wearing pearls and high heel boots. I had on yoga pants and Uggs. You told me you didn't do unpresentable. I told you you were a pain in the ass.

I am busy now. Planning your funeral. I keep starting to text you to tell what is going on. I want to tell you how I ran around like a maniac last night cleaning my house before your mom came over. I want to tell you how sweet the girls are and how they hugged me so hard on Wednesday morning and then made stupid goofy faces to make me laugh. I want to tell you about Jeremy. And how strong he is being. And how he is putting up with having so many people around which you know he doesn't like. And how last night he sent me an email from your account with the subject line "Allie...It's Me!" as a joke.

Mostly, I just want to chat about who is doing drop off and pick up next week. I want to beg you for the 100th time to come skiing with us. I want to look at more paint colors because the eighteen shades of grey currently painted on your walls aren't quite right.

I saw you on Thursday. I gave you a hug. I should have come in. I should have forced you to cry on my shoulder. I shouldn't have left. I didn't know.

I hear you telling me to knock it off. To get myself together and stop whining. I hear you reminding you of my promise, those months ago, to be there for your girls. To help them find joy again. And telling me to help Jeremy even when he doesn't want it. I will do all of that my friend.

And I will smile again. Because these goofballs won't allow me to be sad for too long. But today, as the snow falls, I get to cry and on Saturday I will get to say goodbye. I feel so lucky to have known you Laura Scott. I only wish it was for longer.

Love, Allie

Complicated Gratitude

Becoming Disabled

“It’s Not Funny, Allie”