Live with Parkinson’s disease long enough and you start to notice patterns — micro-misfires that add up to lost rhythm. A foot hesitates at a doorway. A hand reaches, then forgets what for. The world is the same, but it feels misaligned — as if a few coordinates in…
Many ancient civilizations believed that the Earth was flat. This worldview was tethered to the simple, familiar image of a flat plane with edges you could fall off. Of course, the Earth was never flat, but thousands of years ago, it may have seemed that way. That was the…
If you’ve ever had the pleasure of visiting your local Department of Motor Vehicles (DMV), you’ll understand the following metaphor. You walk in with the faint hope of progress. Maybe today will be different. Maybe the line will be short. Maybe the system will work. Maybe, finally, someone will call…
There’s a particular kind of fear that creeps in when living with Parkinson’s disease. It’s not the shaking or the stiffness that haunts me the most; it’s the quiet dread that my own mind might one day turn against me. Not in some dramatic, movie-style way, but in the…
We all age, but some of us — human or not — seem to do it a little faster. Our dog, Jax, turned 10 this year. He’s a cockapoo mix with an easy smile and a heart big enough to stretch across our entire household. For most of his life,…
Living with Parkinson’s disease means constantly negotiating the unpredictable: tremors that come and go without warning, stiffness that turns a short walk into a major expedition, fatigue that hits like a wave. It’s easy, almost automatic, to want to handle it all quietly. I don’t want to be a…
In my columnist profile, I describe myself as a “patient research scientist,” although I’m not a real scientist (and I’m not patient). This description probably applies to most people with neurological disorders, as we’re constantly searching for new therapies that might work. And if you’re like me, you need to…
In recent columns, I touched on my frustrations with clinical trials and how, as a patient, I felt out of the loop regarding meaningful research and development. Despite all my efforts to get involved, I’ve realized it’s a slow-churning, big-money system. I can’t see how I can personally make…
I became extremely frustrated with the whole treatment and research system when I was denied access to the Parkinson’s disease clinical trial I wanted to participate in. That prompted many questions: Why does research take so long? Where does all the fundraising money go? Why do I feel so…
What’s the best way for people with Parkinson’s to contribute to research? I recently talked about how there are always more questions than answers and how there must be better ways to solve our problems. I highlighted the obvious need to engineer better brain-body communications. I’ve encouraged patients…
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