a little more than dipping my toe in

Social Influencer Summit, the Michael J. Fox Foundation, NYC, May 2026

When I started Continue Climbing last summer, I thought I was dipping my toe into the Parkinson's world. Looking back now, it seems pretty clear that I have done a lot more than that. 

The thing is that none of this was intentional.

When I launched this website, Continue Climbing, it wasn’t because I wanted to become a Parkinson’s advocate or build a platform around living with the disease. Honestly, it was mostly for me. A place to write. A place to process. A place to remind myself—and maybe a few other people—that life doesn't have to end after a diagnosis, of any kind really.

Because when I was diagnosed, I genuinely thought mine had.

I was 35 years old. Parkinson's disease was something that happened to old people, to other people. Certainly not to me. Not to someone who loved work and mountains and travel and adventure and had a long list of plans for the future. For a while, all I could see was loss. The loss of the future I thought I was going to have. The loss of any sense of certainty. The loss of the version of myself I liked and thought I knew.

Over the years, though, I slowly came to understand something that felt impossible in those early days: life wasn't over. It was different. Sometimes much harder. Sometimes disappointing. Sometimes scary. But it was still life, and there were still mountains to climb, places to go, and meaningful experiences waiting ahead.

That's really where Continue Climbing came from. I wanted a place to tell those stories. Sometimes through writing. Occasionally through video. Mostly just to document the reality that even when life becomes harder than you imagined, there is still life to be lived. That felt manageable.

What didn't feel manageable was becoming immersed in the Parkinson's community itself. Because for many years after my diagnosis, I actively avoided it. I didn't go looking for support groups. I didn't attend conferences. I didn't spend much time reading about Parkinson's research. I certainly didn't seek out opportunities to spend large amounts of time around other people with the disease. For most of the decade since my diagnosis, I intentionally kept that world at a distance.

Part of that was denial; part of it was self-preservation. And part of it was fear. I was afraid that seeing Parkinson's reflected back at me through other people would somehow make it more real.

Then last fall, on a whim, I signed up for the first-ever Young Onset Parkinson's Network retreat in Arizona. Even then, I wasn't exactly diving in. The retreat lasted two days, but rather than stay at the retreat center with everyone else, I booked a hotel in Phoenix. I wanted an escape hatch. I wanted the ability to come and go as I pleased. If things felt overwhelming, I wanted to be able to retreat to my own space. I was nervous about attending. And honestly, I think I had good reason to be. The retreat was wonderful. The people were kind, welcoming, funny, and generous. It was great to meet other people who understood experiences I rarely had to explain. But it was also a lot.

For the first time since my diagnosis, I was spending significant time with other people living with Parkinson's disease. Some were thriving. Some were struggling. Some looked nothing like what I expected Parkinson's to look like, and some looked exactly like my fears. The experience made the disease feel more real. I left grateful that I had gone, but I also left emotionally exhausted.

Then came Guatemala in November. I joined a Team Fox fundraising trek to climb volcanoes and raise money for the Michael J. Fox Foundation. It ended up being a very meaningful trip. The volcanoes were spectacular, the challenge was rewarding, and the people were wonderful. Most of the participants didn't actually have Parkinson's disease themselves. Many had parents, spouses, siblings, or friends who did. Yet we were all there for the same reason. To do something hard in service of something bigger than ourselves. The friendships formed quickly, as they often do when you're climbing mountains together. There is definitely something about suffering uphill that accelerates connection.

I came home feeling inspired. Still, I didn't think I was becoming part of the Parkinson's world. I thought I was just doing a few Parkinson's-related things. Then came March.

I was in Washington, D.C. for work when I learned about the Parkinson's Policy Forum, organized by the Michael J. Fox Foundation and supported by a coalition of Parkinson's organizations. More than 350 people from around the country come to Washington for advocacy training and meetings on Capitol Hill. When I received an invitation, I figured I might slip away from my office for an afternoon, attend a few sessions, and join a couple of meetings. Instead, I realized it was a four day, all day program and I found myself fully immersed.

As I've already written about, the experience was far more powerful than I expected. For one thing, it was the first time I had really spoken publicly about Parkinson's disease. Certainly the first time in person. That turned out to be harder than I anticipated. I cried. More than once.

For years, I had become very good at compartmentalizing Parkinson's. I dealt with it privately. I carried it quietly and now, suddenly, I was talking about it openly. I was talking about what it had taken from me, talking about what I feared, and talking about what I hoped for. And I was doing it surrounded by people who understood it much better than most. It was uncomfortable. It was vulnerable. And it was really good. It was also where I met many of the people from the Michael J. Fox Foundation and other foundations who are quickly becoming important parts of my journey.

Colorado delegation at the Parkinson's Policy Forum, Washington, D.C., March 2026

Their passion, kindness, and relentless optimism are contagious. Apparently contagious enough that not long afterward I found myself flying to New York City for the Michael J. Fox Foundation's MVP Weekend, recognizing people–– including myself––who had raised more than $10,000 during the previous year. Then I was back in New York again for the Parkinson's Unity Walk in Central Park. And finally, I was back yet again for the first-ever Michael J. Fox Foundation Social Influencer Summit. At some point, it started to feel like I lived in New York City.

Over the course of about six weeks, I was in New York four separate times. I found myself riding the subway, walking through Midtown, navigating Penn Station, and catching flights back and forth so often that it almost began to feel routine.

Michael J. Fox Foundation MVP Weekend, NYC, March 2026

The Social Influencer Summit was particularly surreal. To be honest, I'm still not entirely sure why I was invited. I don't have a large following and I definitely don't consider myself an influencer. I also remain somewhat conflicted about how much Parkinson's-related content I actually want to create. 

But it was a fascinating experience. I met incredible people. I learned a lot about storytelling, advocacy, and using social media thoughtfully. I got to know Foundation staff even better. And somehow, I even got to spend time talking with Michael J. Fox himself.

If you had told 35-year-old me, sitting in a neurologist's office trying to understand a Parkinson's diagnosis that came out of nowhere, that one day I'd be having conversations with Marty McFly about this, I wouldn't have believed you. Honestly, I probably wouldn't have wanted to believe you because that would have meant Parkinson's was still going to be part of my life a decade later.

Then, just a week after returning from New York, I boarded another plane and headed to Phoenix for the World Parkinson Congress. About 4,000 people attended over the course of four days. And for those days, it was Parkinson's all day, every day.

Researchers, scientists, neurologists, advocates, care partners, and people living with Parkinson's disease from all over the world gathered together in one place. If there was something to learn about Parkinson's disease, chances were someone was presenting on it. Anything you could possibly want to learn about Parkinson's disease was there. Well, almost anything. The cure was notably absent.

The Congress was fascinating and overwhelming in equal measure. I learned an enormous amount. Some of it was hopeful, some even made me feel a little optimistic about the future. But most of it reminded me how complex this disease really is and how much we still don't understand. And occasionally, what I learned was terrifying. That is one of the strange realities of becoming more involved in the Parkinson's community. Sometimes knowledge is empowering. Sometimes it is unsettling. Sometimes it is both at the exact same time.

Indeed, through all of this, I have found myself wrestling with some complicated feelings. For nearly ten years, I've worked very hard not to let Parkinson's occupy too much real estate in my life. Most days, I don't think about it much more than I absolutely have to. I take the medications, I exercise, and I do my best to manage the symptoms. Then I try to get on with living. One of my biggest fears was that Parkinson's would become my identity.

I never want every conversation, every friendship, every project, and every trip to revolve around this disease. Yet suddenly, over the last year, I've found myself spending a tremendous amount of time in Parkinson's spaces. I have talked about Parkinson’s, written about Parkinson’s, met more people with Parkinson’s disease than I can count. I've attended retreats, climbed volcanoes, advocated on Capitol Hill, spent what felt like half the spring in New York City, attended summits, spoken publicly about my diagnosis, and spent four straight days at the largest Parkinson's gathering in the world.

That is a huge shift for me. It feels both meaningful and draining. What I am slowly realizing, though, is that engaging with Parkinson's disease is not the same thing as allowing it to define me.

The reason I keep showing up isn't because Parkinson's has become the most important thing about my life. It's because the people are remarkable, the science matters, policy matters and because helping someone feel less alone matters. And because I know how badly I could have used examples of people living full, meaningful lives with Parkinson's disease when I was first diagnosed. I am sure they were out there, but I didn't know where to look. Maybe now I can be one of those examples for someone else. It is also because people who don’t have Parkinson’s disease, which thankfully are most of the public, need to understand it better. 

I still don't want Parkinson's to be the center of my life. I desperately hope it never will be. Tomorrow, I'll still be more interested in mountains than medicine, more interested in adventure than symptoms, and more interested in what I can do than what I can't.

But somewhere along the way, while trying to keep Parkinson's at arm's length, I found a community that I didn't know I needed. It is a community I am still figuring out and it is a community I am still not entirely sure how I fit into or if I even do. However, it is a community that, whether I intended it or not, has become a much bigger part of my life than I ever imagined.

So no, I haven't just dipped my toe in. Apparently 2026 is the year of jumping in headfirst.