A Chapter Ends: My Experience with the Pump, Gratitude, Apologies, and the Road Ahead

Many of you have asked about my experience with the Vyalev/Produodopa Pump, which I’ve written about often. The past nine months with the Pump have been a whirlwind—emotional, intense, and at times, hopeful. I fell in love with it. I became an early and passionate advocate, even helping to build a vibrant WhatsApp community that I’m still proud of. That community brought me closer to some truly remarkable people, and for that, I’m deeply grateful.

But now, I’ve had to make the difficult, final decision to stop using the Pump, after a trial period off it a few weeks ago.  Not because it failed—but because my condition has changed.

What we initially thought was Parkinson’s has now more clearly revealed itself as PSP (Progressive Supranuclear Palsy) — a related but distinct and more aggressive disease. PSP has no medical treatment and doesn’t respond in the same way to Parkinson’s medications, and unfortunately, the Pump offered little relief for my worsening symptoms: balance issues, shuffling gait, eye movement difficulties, and more.

In nine months, I’ve gone from getting back to my running 5k regularly to struggling to walk 200 meters with a walker, and my walk is really now a shuffle most of the time. The Pump’s side effects—infections, pain, occasional bleeding from misinjections, and the daily burden of carrying it—were manageable when it seemed effective, but became too much given its limited benefit.

So, I’ve returned to Sinemet. Whether it’s helping is debatable, but for now, it’s the safer path. Withdrawal from PD meds is not without potential negative impacts, and I’m taking things carefully.

Looking back, I’ve come to a few reflections that feel important to share.

My experience is not typical. My journey has always been different—more aggressive, more balance-focused—and PSP was already on the radar two years ago, as a potential direction my symptoms were taking. So my decision to stop the Pump should not be seen as a reflection on its potential for others. For many with classical Parkinson’s, to the extent there is actually such a thing, it may still be a transformative option.

The people I’ve met through this journey have been extraordinary. I’ve witnessed firsthand the courage, humor, and resilience of those living with Parkinson’s. It’s been humbling and inspiring to see how people navigate this disease with such strength, vulnerability, and grace. To all those people I send my huge personal gratitude.

And the need for a cure and better management is urgent. Parkinson’s and related diseases affect so many—it’s truly staggering. I continue to hope and pray for breakthroughs, for better treatments, and for a future where these conditions no longer hold such power over people’s lives.

I can’t say I “enjoyed” my brief affair with the Pump—it had its highs and lows. But I don’t regret it; in fact, I was privileged to be part of the rollout.

I’ve always emphasized that my blog isn’t medical advice, but I sincerely apologize if my enthusiasm for the Pump ever misled anyone. My goal has been to share my journey, connect with others, and highlight the patient experience to help people feel less alone. I’m sorry if this led anyone to make a decision that wasn’t right for them. I now understand why it takes years to gather a real view of a medical treatment’s effectiveness, although I continue to believe there is a need for patients to communicate in real time.

My journey with PSP continues. I may have had to retire from work and travel, but I’ve found a genuine sense of peace. In many ways, life feels more meaningful now, albeit so much slower. My faith is stronger. Though a bit bruised and dulled, my humor and positivity remain.  I’m still fighting, still questioning assumptions, and still trying to live each moment fully.

As a dear friend reminded me: Live in the moment, live with meaning and aim for the highest quality of life possible.

Sending my best best wishes and hopes to all.