Dear Friends,
2024 and 2025 were demanding years for PD Movement Lab, with hard-won growth and some big challenges from my Parkinson's. The pace of it all meant we missed our 2024 and 2025 updates, so consider this our Parkinson’s Awareness Month catch-up. I'm excited for you to see everything that has happened.
You’ll notice one big change right away: we’ve redesigned the Movement Lab website. The main change is now everyone can take the Gaitkeeping video course. The new site should also make all the resources already on the site (10+ years worth!) easier to find.
Colin and I have also made large strides improving the Gaitkeeping mobile app, with more support for people without musical training, richer music programming for people with training, and access on Android. What's more, we will combine the Gaitkeeping course and app in a 100 person clinical trial later this year.
Finally, the Lab continued to push its weekly classes and artistic work in new directions. On the class side, I began experimenting with in-person only and online-only classes to serve each population better. On the creative side, the Lab created a new piece as part of Rutgers' Disability & Dance initiative, and I served on the dance committee for the 2026 World Parkinson's Congress.
Amid all this progress, I also faced my hardest PD challenge in over a decade — a condition called neurogenic orthostatic hypotension, which threatened my independence. I'm grateful to say I'm in a more stable place now, and I'm entering 2026 with real optimism.
I hope you find something useful in everything below.
Yours,
Pam
A New Website
We’ve rebuilt our website with one goal in mind: making PDML resources easier to access. The biggest update is that the Gaitkeeping video course is now available to everyone. We also reorganized a decade of PDML material—PD Outlier interviews, movement tips, and more—into cleaner categories.
Over the course of this year, we’ll be re-highlighting different material across the site!
Gaitkeeping
Gaitkeeping Video Course
The Gaitkeeping video course is now available to everyone! At this point, over 200 people have taken it. In our post-course survey:
- 92% said they had greater physical confidence
- 88% said they better understood how PD affects their walk
- 95% said they would recommend it to other PwP.
Gaitkeeping has also continued to gain institutional notoriety. In September of 2024, it was chosen as the theme of the University of Maryland’s 400-person patient education conference, Within Our Reach. Colin and I gave the keynote address.
If you previously expressed interest in the Gaitkeeping video course, you should’ve received a discount code by email as a thank you for your patience.
Gaitkeeping mobile app
The Gaitkeeping app, which helps people use music to fortify their walk, is now available to iPhone and Android users. The free version of the app teaches you how to use music to improve walking form, while the premium version of the app gives you access to an extensive library of music curated to help support and structure your gait. You can download the iPhone app here and the Android app here.
We have around 100 people using the app, but we consider it a work in progress and are looking for feedback over the coming months. If you'd like to help us test, you can enter your email here:
If you want help installing the app, you can email Colin at colin@pdmovementlab.com.
Gaitkeeping Research
This year we will combine the course and the app into a formal intervention in a 100 person clinical trial. Right now, the video course and app act as separate general education tools people can use at their own discretion. The trial will help us understand the effect of using them together.
The study will be performed remotely in partnership with Rutgers University, and feature a team of experts in dance, psychiatry, and biomedical engineering.
If you are interested in participating you can enter your email below.
PD Movement Lab Classes
This year, for the first time since before COVID, PDML students in NYC had access to dedicated in-person classes, as opposed to just hybrid. These classes allowed them to receive more individualized feedback and practice moving across large spaces — a skill PwP need to constantly train. Online students also got their own dedicated programming: a series of video classes I created with Dance for PD, designed specifically for attendees at home. The tradeoff is that I now miss my direct connection with my virtual students. Over the coming year I will continue to experiment with how to find the right balance between in-person, hybrid, and online-only classes so that everyone is served.
I also want to recognize the efforts of the PDML teachers I've trained: Jackie, Mor, and Ariel. They've grown into wonderful teachers with distinct styles and vibrant classes. Their work makes it possible for me to envision teaching for longer, because having people I trust to teach PDML gives me flexibility to deal with the complexities of Parkinson's and aging. I hope to have a formal teacher training program available late this year — if you're interested, please enter your email in the form below.
Choreography
Air Play
Air Play was a piece that explored the force and movement of air by employing props like parachutes, balloons, bubble wrap and more. I loved this piece, in part, because it wasn't about Parkinson's Disease at all. Sometimes we use art to reflect or investigate who we are with PD, but other times it's just nice to create something joyful and interesting.
Thank you to Rutgers for commissioning the piece as part of their Dance & Disability residency.
2026 World Parkinson Congress Dance Committee
For the 2026 World Parkinson's Congress, PD Movement Lab will once again be choreographing a piece for the opening ceremony. The piece will be titled "Knots & Threads" and is inspired by the tension PwP experience between accepting support from others and maintaining our independence and sense of self.
Thanks to the work of my fellow dance committee members, David Leventhal and Clara Kluge, there will also be other fantastic opportunities to experience dance at the WPC. Clara and David are accepting dance video submissions for a project that will displayed at the Congress, and David, along with other leading dance teachers, will be giving classes in the renewal room.
Talks & Presentations
Keynote Address at the University of Maryland
Colin and I delivered a keynote address called "Curiosity, Observation and Openness: A Mindset for PD." The talk focused on how these three approaches to life with PD, led me to development the system of movement strategies in Gaitkeeping. We also talked about the positive results of the Gaitkeeping pilot study, and how other PwPs (as profiled in the PD Outlier series) have benefitted from adopting the same mindset.
It was my first time presenting with Colin on a big stage. We spoke to over 400 people, and it was a great surprise to the attendees when he bounded up on stage halfway through the talk. It is special for me to see my work with Parkinson's over the past two decades merging with the professional pursuits of my son.
Creativity with Parkinson's Disease
I gave the keynote on how the lived experience of Parkinson’s can spur creativity for the first ever Cincinnati Parkinson’s Creativity Expo.
More specifically, the talk focused on recent research studying unusual surges of creativity in Parkinson’s patients. Scientists have argued that this is due to the medications we take, specifically dopamine agonists. But I believe the trials we go through in living with the disease plays an equal if not greater role in inspiring creativity.
Shaken Not Deterred: A YOPD Conference
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This year, I helped organize a Young Onset Parkinson’s conference at the Marlene Meyerson JCC in partnership the APDA and the Parkinson’s Foundation. The conference was spearheaded by Kazim Panjwani, a 36-year-old researcher living with YOPD who also runs a large NYC support group.
People with YOPD are massively underserved, and also vitally important to the PD community. Their relative youth and energy paired with the prospect of having the disease for decades, drives them to become leaders in advocacy and research. Finding ways to better support them will help everyone.
If you’re YOPD in NYC, I encourage you to check out Kazim’s support group.
Physician Education at Northwell
The past two years I've presented at Northwell Health's continuing education event “Neurology for Non-Neurologists.” My presentations have focused on how physicians can encourage movement, purpose, and connection in their patients lives, and how leveraging patient insights can advance care outcomes.
OT Masterclasses at Tufts University
In 2024 and 2025, David Leventhal (Dance for PD) and I returned to the Tufts Occupational Therapy PhD program to teach two core PD Movement Lab concepts: imagery can help PwP move with greater precision, and improvisation builds real-world resilience.
In 2024, we explored how the right image can guide movement more precisely than a literal instruction. In 2025, we shifted to physical improvisation—practicing multiple ways to stand up, recover, and navigate real-world challenges like crowds, tight spaces, and distraction. The goal was to help OTs (and PwP) build the flexibility to respond creatively to unexpected movement challenges in daily life.
Rutgers Annual Symposiums: An Expanded Research Team
The Lab's 2024 presentation highlighted the addition of biomedical engineering professor Dr. Simiao Niu to the Gaitkeeping research team. The 2025 presentation focused on all the progress the Gaitkeeping app has made, and how it will feature in the upcoming study.
We also celebrated the 10th Anniversary of Rutger's Dance and Parkinson's program. What a feat! Congrats to Jeff and Natalie! Thank you so much to Rutgers for being an innovative supportive research partner!
WPC Panel: Growing Up with a Parent with Parkinson's
Colin spoke about the experience of growing up with a parent with PD on a panel produced by the WPC. If you are a parent or prospective parent with PD, and have concerns about how your kid might perceive you, I encourage you to watch this panel. He was three when I was diagnosed so he’s only known me with my PD.
A Personal Challenge
In 2024, Parkinson’s threw me a new curveball that challenged my independence: I started having random fainting episodes. Doctors later diagnosed the cause as neurogenic orthostatic hypotension (nOH), a blood-pressure regulation problem that can develop as Parkinson’s weakens the autonomic system. It took months of paying close attention to my symptoms, adjusting medications, and Colin tracking outcomes with digital health tools between appointments, but, thankfully, I reached a more stable point last fall.
Colin and I plan to write more about what we learned soon, but for now, if you are also dealing with nOH, here’s what helped me: lowering my Crexont dose and adding Droxidopa, plus small doses of midodrine and fludrocortisone. For nighttime blood-pressure issues, I now sleep with my head elevated and hydrate aggressively as soon as I wake up. This is not medical advice. Please consult with your doctor before trying any of this!
What Gives Me Hope
While PDML's progress has been exciting, the most reassuring part of last year was finding a way to manage nOH.
For a while, I feared it might mark an irreversible shift. But even after nearly a year of limited success, we discovered a new approach that broke through. Parkinson’s will undoubtedly bring new challenges, but this experience reminded me that even when it feels like PD is closing in, there are still things left to discover. I hope you carry this sentiment with me into 2026!
