When it comes to Parkinson’s, hope is not a plan, but urgent action is
I recently attended the Parkinson’s Policy Forum in Washington, D.C.
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I returned home from the Parkinson’s Policy Forum in Washington, D.C., feeling two things at once: encouraged and unsettled.
I felt encouraged because I was surrounded by passionate, committed people — advocates, care partners, researchers, clinicians, and people living with Parkinson’s disease — all working or change. I was unsettled because the deeper message was impossible to miss: Parkinson’s is urgent, but our response still is not urgent enough.
When you live with Parkinson’s, you learn quickly that it does not wait. It keeps moving. It changes the terms on you. And it affects far more than tremor or movement. It can reach into sleep, mood, cognition, energy, speech, and that hard-to-describe sense of whether you fully feel like yourself on any given day.
That’s why I went to Washington — not just to share my story, but to make a broader point: We need more action, more urgency, and much more funding for innovative Parkinson’s research. I felt that personally as someone living with Parkinson’s who is recovering from recent deep brain stimulation (DBS) surgery.
I’m grateful for the treatments we have. Levodopa has helped people for roughly 60 years. DBS has helped many for more than three decades. Both matter. Both help. But gratitude should not become complacency. These therapies are important, but they are not enough. They are not the final answer for a disease this complex.
Demanding a change in strategy
Parkinson’s is affecting more people. Families are carrying enormous burdens. And yet too much of the research and funding conversation still feels narrower and slower than the moment demands. We need more shots on goal.
That means continuing to support drug discovery and disease-modifying therapies, absolutely. But it also means funding bold ideas that complement those efforts: better biomarkers, toxic exposure research, adaptive neurotechnology, noninvasive approaches, rehabilitation science, and innovative ways to improve function and quality of life in the real world.
The toxic exposure piece matters to me. My own history includes exposure to weed-control chemicals I sprayed while working in landscaping during high school and college, and I know many others have questions about the environmental risk. We need to better understand what may help drive Parkinson’s, not just how to respond after it arrives.
In sports, when the game changes, you do not keep running the same play and call it a strategy. You adjust. You widen the playbook. You look for better angles. Parkinson’s demands that same mindset from us now.
I was also present as the founder of the spatial computing app Brain Storm to help advance innovative approaches that could expand how we think about treatment, function, and recovery. Parkinson’s is a complex systems problem. Our research agenda should reflect that complexity, not retreat from it.
The people I met last week at the Parkinson’s Policy Forum gave me real hope. There is passion in this community. There is intelligence. There is heart. But hope by itself is not a plan. Urgent action is a plan. Serious research investment is a plan. Funding innovation like lives, families, and futures depend on it is a plan.
Because they do.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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