The most important changes in someone’s day with Parkinson’s are usually small. Most of them I didn’t invent. I found them by listening.

I'm an occupational therapist. I run a clinic called Fireweed Therapy, and I've spent the last eight years working with people who have Parkinson's. Before any of that, the first person who taught me anything about this work was my mom.

She was incredible. She taught me, before I had words for it, how to pay close attention: to people, to small things, to what was actually happening in a room. She practiced mindfulness in every-day life. She died of cancer when I was sixteen, and the lessons she gave me are still the lessons I’m using.

A few years later, I was helping my grandmother through a stroke and a broken hip. I did the best I could. I also remember, vividly, how much I didn’t know: how much someone you love can need that you don’t yet know how to give. The tools I have now, I wish I’d had then.

I think a lot of people in the audience I serve know exactly what that feels like. Whether you’re the one with Parkinson’s or the one walking alongside someone you love, the daily reality is that you keep encountering small new things you weren’t briefed on, and you do the best you can in the moment. PAC exists because I want there to be a place those tools live: not behind eight clinic visits, not in a 20-minute appointment every few months, but in the in-between, where the actual living happens.

I came to this work through occupational therapy. I started as a CNA: bedside, hands-on, the most basic and the most close. I went on to OT school, became PWR! and LSVT BIG certified, and trained as a Rock Steady Boxing coach. Each step took me closer to the people I work with, never further. I’m an outdoor person. I snowboard, hike, run, and lift. And I think a lot about what it takes to keep using your body for the life you actually want to live.

Here’s what I’ve learned in those eight years that nobody tells you in school:

The most important changes in someone’s day with Parkinson’s are usually small. A different way to hold a cup. A new rhythm for sitting down. A reorganized kitchen drawer. A specific cue to start a movement that’s gotten stuck. None of these are dramatic. Most of them I didn’t invent. I found them by listening to the person across from me describe what they’d already figured out on their own.

Meanwhile, every person I worked with was carrying around a small library of solutions they’d invented themselves. Workarounds. Adaptations. Tiny, brilliant ideas born from living with this every day. And almost none of it was crossing over from one living room to another. People who could be teaching each other were figuring it out alone.

That’s what Parkinson’s Ability Community is for.

PAC is the place I wished my patients had after their last visit with me, and honestly, the place I wished my family had had during the years before I knew how to help. A community where the occupational therapist’s perspective is always there, where the small adaptations that change someone’s day are organized and findable, where the wisdom that lives in living rooms across the country actually meets, and where nobody has to figure out the in-between alone.

It’s also, honestly, my own continuing education. I learn something every time I work with someone who has Parkinson’s. PAC is built on the premise that this knowledge (yours, mine, everyone’s) should belong to all of us.

That’s the work. To walk alongside. Between appointments. For the everyday, with the maps the rest of us are still drawing together.

Alaena Bateman, OTR/L
Founder, Parkinson’s Ability Community