Allie Signorelli, 50: The Feisty Champion

Don’t google your health-related symptoms. Just don’t do it. However, this sound advice is often kicked to the curb in desperation. Late one night, while searching for “the earliest symptoms of Parkinson’s,” I braced myself for the usual spiral of worst-case scenarios. I was looking for answers for a loved one, trying to find direction in a sea of uncertainty. Who I found was Allison Signorelli.

At just 47, Allie was diagnosed with Young-Onset Parkinson’s disease, and her daily musings about the symptoms, medications, side effects, sleep struggles, and more are a mixture of humor and verity. She’s charming, a bit feisty, tragically hopeful—and deeply relatable. Allie captures both the weight of her diagnosis and the joy in everyday moments—big and small. She shares snippets of ordinary date nights, witty exchanges with her mom, and entertaining conversations with Bean, the fame-seeking family dog. Then there are the bigger “You-Only-Live-Once (YOLO)” moments: slipping back into her wedding dress just because (it still fits, so why keep it boxed up?), braving the winter elements to cheer on the Notre Dame Fighting Irish, zip-lining on a family trip in Hawaii, and standing on Capitol Hill advocating with The Michael J. Fox Foundation.

Allie is a daily dose of realism and optimism despite a challenging diagnosis. Her passion to make life, and the diagnostic journey, better for those with Parkinson’s is magnetic. By sharing her personal philosophy of action being the antidote to despair, we can all find inspiration in her unique and positive approach to any of the challenges life throws our way—no matter what the size.

I can’t wait for you to meet Allie.

You recently celebrated a birthday, how old are you?
I just turned 50 in December!

Where are you from and where are you currently based?
Ready for the longest answer ever?? (Ha!) I was born in Toronto, Ontario, but raised mostly in New Jersey—not far from New York City. We moved back to Toronto when I was a junior in high school and then moved back to NYC when I was 18. I went to Northwestern University in Evanston, IL, and then married the love of my life. We lived in Chicago before finally moving to Arlington, VA, in 2001. We’ve been here ever since—though my wanderlust makes me believe we’ll move again someday!

How old were you when you were first diagnosed with Parkinson’s? Can you share with us what the diagnostic process was like for you?
Long and somewhat painful—as I’ve learned over the years, the diagnostic process is long and agonizing for many young women. I started noticing a twitch in my right ankle in 2018. I thought it would go away and so did my primary care doctor who labeled it a “benign nuisance.” Over the course of the next few years, it became ever present and eventually my big toe on my right foot would rhythmically twitch.

By that point, we were in the middle of the pandemic and I attributed it to the stress we were all feeling at that time. It wasn’t until the summer of 2021—after hitting my head on the edge of the car door landed me in the ER—that anyone made me think that the tremor was something to be concerned about. The neurologist on call that night said, “I think your head is fine, but tell me more about that tremor?” He asked me to make an appointment and come visit him—which I dutifully did.

A year of inconclusive tests, including an MRI and a CAT scan, provided no answers, and I resigned myself to having to deal with this for the rest of my life. As long as it wasn’t getting worse, I figured I could manage it. But it did get worse, and by the fall of 2022, I was having trouble walking, typing, eating, swallowing, and more. I ended up back in my neurologist’s office practically in tears out of frustration. At that point, he had me do a series of weird physical tests that felt like a DUI stop. I figured he was assessing whether I had officially lost my mind, but I later learned that these were tests used to provide a clinical diagnosis of Parkinson’s.

After leaving me alone in the office for what felt like forever, he came back and told me he thought I might have Parkinson’s. He wanted me to meet with his colleague, a movement disorder specialist. I remember the blood rushing to my face and trying to hold myself together until I got to my car. Two weeks later, we met with the specialist who ordered a DaTscan and the rest, as they say, is history. Four years after my first symptom, I was officially diagnosed with Young-Onset Parkinson’s.

You mentioned almost giving up at one point. Why was that?
Studies show that it often takes longer for women to be diagnosed with Parkinson’s than men, and I was no exception. I had multiple tests and years of appointments that didn’t provide any answers to the symptoms I was having, and I almost gave up. But I knew in my gut that there was something wrong, and I am glad I kept pushing until I got the answer. Early diagnosis can be helpful in slowing progression and to improve our daily lives as patients, so I always tell people that if you feel that something is wrong, keep pushing.

What’s one word you’d use to describe your life pre-diagnosis? What about post-diagnosis, and why?
I often think of it like a giant, imaginary line. There is before Parkinson’s and after—and there is very little about my life that is the same. Physically, I am in better shape, thanks to a lot of working out and eating better, but also thanks to the handful of medicine I take every few hours that have my PD symptoms somewhat well controlled. I am no longer able to work in the way that I used to—producing major fundraising events across the country. The stress on my body was too much, and I was unable to provide the same level of client service.

I am now a full-time patient advocate, which is meaningful, and I am grateful for the flexible schedule that allows me to create. I really do my best to stress less about the small things and take more adventures with my family. I see Parkinson’s as a very complicated and difficult gift—one that is devastating in some ways and so beautiful in others.

Do you have any advice for someone currently in the lengthy diagnostic process or in the early days of absorbing this type of life-changing news?
I think that any advice you receive in the early days post-diagnosis just goes in the void. You can’t possibly absorb all the info you receive. People were all over the map for me—from “It’s no big deal…my uncle has had Parkinson’s for 30 years, and he’s fine” to “OMG that is my WORST nightmare come true!” I would say just give yourself plenty of time to grieve and process.

A Parkinson’s diagnosis, at any age, is a shock and you need time. There is no singular right path that anyone takes. For me, taking action helped. I immediately threw myself into fundraising and advocacy because sitting around feeling sorry for myself made it worse. I will say that the internet is generally scary and not always helpful, so don’t panic about the first thing you read. Finding a community is helpful. For me, that was on Instagram—but everyone has to find what works for them.

As an advocate, what has been one of the most unexpected outcomes of doing this work?
I worked in the brain health space as an Alzheimer’s advocate and fundraiser for many, many years. I knew just how important the National Alzheimer’s Project Act (NAPA) plan was to increasing the funding needed for research, awareness, and care. When I heard that similar legislation for Parkinson’s had been introduced in Congress, I immediately focused my advocacy efforts on getting it passed. I knew we had a firm deadline because if it didn’t pass before the next election cycle, we would have to start all over.

Luckily, it passed in the House in December 2023 and moved to the Senate for consideration. I was told by many people not to get my hopes up because that Congress [at the time] had passed fewer bills than any other in history. This challenge didn’t stop me or any of the thousands of advocates who took action—calling, emailing, hosting events and online information sessions. I found out shortly before it became public that the Senate had passed the bill unanimously in May 2024. I was SOBBING and cheering in the aisle of my local Target and, of course, shared the news with my Instagram community immediately. It was a huge victory, as was that day in July when President Biden officially signed it into law. There is still a tremendous amount of work to do in setting up the National Parkinson’s Project plan and to get it fully funded by Congress. But that huge, and somewhat shocking, win is something I am very proud to have played a small role in.

Tell us a bit about your family and how this has impacted their lives? Has your diagnosis changed the way you all approach daily life?
My diagnosis was difficult for my family—my husband, Mike, and our kids, Ava and Bobby. But they have all rallied behind me. Mike is a fantastic care partner, which is primarily an emotional support role at this point because my symptoms are fairly well-managed by my medications and lifestyle interventions right now. But he attends every appointment with me, encourages me to stay as healthy as possible by working out with me, and is always there to listen when I need to process the emotions I am feeling.

Our kids have been amazing—whether it has been joining me in raising money for PD research or helping manage my social media accounts. We have all adopted a more adventurous lifestyle—taking trips and doing physical things like zip-lining and rock climbing that we never did before. We have adopted the YOLO (you only live once!) philosophy because we don’t know how long I’ll be able to do these things, and we don’t want to waste the opportunities while we have them.

As your husband now has the dual role of “caregiver”, what advice do you have for other caregivers?
Ohhh…I try never to answer these kinds of questions for him in terms of advice—but I will say I am incredibly lucky to have him in my life. We met when we were three years old. Our moms were the co-leaders of our older sisters’ Brownie Troop, and Mike and I would go with them to meetings and on day trips. We started dating in 8th grade and were together off and on throughout high school and college. We got married 25 years ago in Chicago. He is my best friend, and he has navigated this journey like a champ. Like I said, I am truly lucky.

You’ve built quite an impactful Parkinson’s-focused Instagram community. How does your family feel about your digital storytelling? I personally love your daily thoughts and musings, but imagine there are pros and cons with openly sharing your life.
Mike and the kids have been really supportive—especially because I do share so much about them too. I worry it might feel too invasive at times. So, I always ask them before sharing any of their feelings or their life updates to make sure they are okay with it. They generally love my social media with the exception of when people (online strangers) have sometimes been hurtful towards me—which sadly is the norm these days, and I’m certainly not immune to it. My family is very protective and worries for my well-being when the negative and hurtfulness happens. But, generally speaking, they are very proud of the space I’ve created for this online community.

Your social media and your work have such a relatable and optimistic message. How do you manage your emotional and physical well-being on those “darker” days?
I share it all! I have cried on social media and openly talked about when I was struggling with depression related to Parkinson’s—which I’ve learned affects many others with the disease. No one wants to see a perfectly polished account, that’s not why they found me. They want to see their own struggles and successes reflected in my posts, and so I try very hard to be open and honest even when it feels uncomfortably vulnerable.

Even as you navigate the challenging days, you are pretty vocal about viewing Parkinson’s as a gift. Can you share with us what you mean by this?
Well, I’ll be honest, I’m getting less generous in my love of getting Parkinson’s as the days wear on…(ha ha!). I am careful about how I frame it now. As I continue to meet many other people who are further into their disease progression than I am, I see how truly devastating (financially, physically, emotionally, etc.) it truly is. I would never want to diminish their suffering by calling this disease a “gift.”

But I will say that for me, it has been life altering in some good ways—in addition to the challenging ones. I now have a totally different perspective of what is important and worthy of my stress. I am focused on my emotional and physical health in ways I wasn’t before my diagnosis. I have a purposeful and mission focused existence that feels meaningful. So yes, I still see it as a gift in those ways, but try to be more mindful about how others feel when using that term.

You have given your tremor a name. How did the name come about and how does it feel to give your tremor “a voice”?
I literally have no idea when or why I named it Trevor (lol). But that is his name now. It kind of helps me to envision him as this nice guy who just wants to hang out and is not harming anyone by being around. Someone asked if I named him after Trevor Noah—which I did not, but I love that idea because he is hysterical and I love his accent.

You mentioned your earlier professional experience equipped you with some valuable skills that you are bringing to your current professional journey. Can you elaborate on that?
I worked for several Alzheimer’s nonprofits, including UsAgainstAlzheimer’s, Hilarity for Charity (HFC), and the Women’s Alzheimer’s Movement (WAM) as an event producer and fundraiser. I spent time on Capitol Hill working Congressional offices and therefore had connections and knew how to be an advocate. I put all those skills to work immediately when I was diagnosed. I’d also met many doctors and experts through my Alzheimer’s work and engaged them via several different interviews on Instagram. I knew people would love to learn from them as I had.

When we spoke, you had just been named the host of the 2025 Michael J. Fox Foundation’s (MJFF) “Parkinson’s IQ + You” National event series. Can you tell us more about this series and the work you will be doing?
I am so excited! Parkinson’s IQ + You is a series of free, in-person events designed to empower patients and care partners to manage the disease, learn about the latest research, and connect with local resources. The events include a partner expo where people can learn from other organizations and presenters, followed by a breakfast and several panel discussions on topics such as establishing a care team, living well with PD, and the latest in research.

There will be four events this year: Orlando (3/15), Minneapolis (5/17), Nashville (9/6), and Honolulu (10/4). I am so excited to be serving as the host of the series for the next two years and to get to meet people all over the country! Please join me if I happen to be in your city!

You’ve mentioned that Michael J. Fox and the foundation’s team believe there will be a cure for Parkinson’s. Can you elaborate on the recent success of the National Plan to End Parkinson’s Act and the Healthy Brains Act?
These Acts were vital steps in the legislative process, but as I said earlier, we have a long way to go for both to be further established and eventually funded so we can keep momentum going. At this point, MJFF funds more PD research than the U.S. Government, so we have a lot of work still to be done!

What would you like our readers to know about the work the MJFF is doing and how can they get involved? Is there something that most people are not aware of?
The MJFF has truly been a lifeline for me. I got involved almost immediately after I was diagnosed when my sister found information online about their groundbreaking research study called PPMI [Parkinson’s Progression Markers Initiative]. I signed up two weeks after my diagnosis and then reached out to find other ways I could get involved. Since then, I think I have met with their entire team (ha!) and have hosted events, engaged in their advocacy efforts, raised money for TeamFox, and more. For me, action is the antidote to despair, and I would encourage everyone to reach out to them to find ways to engage too!

What’s the one thing you can’t leave the house without each day?
I try not to leave the house unless I am forced to (especially when it’s SO cold!), but when I do, I always have extra PD meds, my phone, and a really good pair of sneakers (of which I have many).

What are your three non-negotiables in life (things you can’t live without)?
My husband and my two kiddos. And I guess Bean (our rescue puppy), if I could add a fourth because she’ll be mad if she finds out I didn’t include her on this list.

Connect with Allie Signorelli:

Instagram
Website & Blog
LinkedIn

Upcoming Parkinson’s IQ + You Events

Learn more about The Michael J. Fox Foundation: Website

Editor’s Note: Some answers may have been condensed and/or edited for clarity.

Cover image: Julie Monticello