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…
The Impatient Patient
— Doc Irish
Doc Irish is a “patient research scientist,” not a real doctor. He was diagnosed with Parkinson’s at age 49 in 2020. He has an amazing family, is married with four children, owner of a healthcare market research firm. Believed to have eventually developed the disorder due to herbicide exposure while working for a landscaping company in high school and college – initial concerns were all about possible causes and trying to rule out genetic links. Now, focused on how can we try to make sense of brain-body dynamics… and how to accelerate real-world therapies.
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I recently started listening to the audio version of Paul Davies’ book “The Demon in the Machine: How Hidden Webs of Information Are Solving the Mystery of Life.” Given my experience with Parkinson’s disease, I was prepared to recognize the title character. Instead, I met a surprisingly helpful little…
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…
Since I was diagnosed with Parkinson’s disease four years ago, I’ve become obsessed with trying to understand everything about it. I don’t know if that’s good or bad, but I question and test everything. And I mean everything. As time passes, I find myself doing that more and more…
I was watching my youngest daughter’s high school lacrosse game the other night and commented to my wife, “She’s seeing the field really well right now.” We talked a bit about how it’s obvious, from a spectator’s perspective, when our kids are bringing their A-game and are engaged and anticipating…
In my last column, I discussed the importance of pursuing a collaborative effort with healthcare providers to develop a holistic and personalized approach to managing Parkinson’s symptoms. Today, I’ll delve into the ongoing trials and errors I’ve encountered in identifying the most effective combination of therapies to…
Living with Parkinson’s disease is an intricate dance of challenges. For me, pain has been a persistent partner on this journey. For years, my coping strategy was to try to push the pain out of my mind, summoning internal strength to accept it as an enigmatic facet of…
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