08/14/2026
In late June, we flew home from LA after what I can only describe as a traumatizing week where I ended up in two different emergency rooms. It was the first time Parkinson’s really and truly scared me (and my family) but it wouldn’t t be the last. Less than a week later I was in an ambulance and spent two weeks off and on admitted to the hospital.
The day after we got back from LA, I was totally wiped out but got up and gave my public comment to the National Parkinson’s Project Advisory Council on Research, Care and Services. (Video here).
I had slightly different remarks planned but I ad libbed to talk about what I had just been through. It was emotional for me but I wanted the council to hear this: they need to act boldly and with urgency. We have already lost two years since the NPP became law and we have a tremendous way to go before there is a plan, it is funded by Congress and it is implemented. I know this because before I was diagnosed, I worked for an organization that was instrumental in getting the National Alzheimer’s plan passed.
It has been a really hard and sobering summer for me, Mike and the kids. We are hopeful and happy people but we have been knocked down over the last few months. And the worst part is that we are not unique. Our story is not rare.
And so I reiterate what I said that day and will continue to advocate for the Council to move swiftly.
Last night, a quote from my remarks was included at the top of this article by Amy Bany Adams, Acting Director, National Institute of Neurological Disorders and Stroke. I encourage you to read it and engage in the process moving forward.
The Parkinson’s community is strong and hopeful and resilient. But we are also suffering and desperate for change.
To the members of the Council - some of whom I consider more than friends, family, I say this: do not be quiet. Do not be patient. Act boldly. Swing for the fences.
And to my fellow patients and our warrior caregivers, do not be silent. Do not sit on the sidelines. Press for change.
The time is now. We can’t afford to wait any longer.
