As I continue to study Parkinson’s, I see more questions than answers
I wonder why current treatments are but temporary help with the disease
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 because I always have more questions than answers. Is my obsession too much? Everyone’s experience is different, but here’s how my story has developed.
In previous columns, I’ve discussed “Exploring the right combination of treatments for Parkinson’s disease” and how “Treatment for Parkinson’s requires a nuanced and integrated approach.” One of the biggest struggles I have is understanding why there’s such a wide range of potentially helpful therapies, but seemingly nothing persists long-term.
Diet and exercise are obviously critical to our general health with Parkinson’s. In my case, I love CrossFit, Rock Steady Boxing, and tai chi. I’ve also embraced metabolic health with the keto diet, medium chain triglyceride (better known as MCT) oil, intermittent fasting, and appropriate supplements. I’ve added regular cognitive training to the mix. I consider psychedelics fair play. I’ve tried transcranial direct current stimulation, a noninvasive brain stimulation.
I’m convinced that many of these can help in the short term, and add on dance, art, and musical therapy, as well. But how can we engineer a solution to the problem that lasts? On the current trajectory, I sometimes feel we’re just managing symptoms until it’s time for deep brain stimulation. But even that treatment for motor symptoms has risks and is not a cure.
Looking for permanent solutions
In the meantime, I know I feel better and move better when exercising, but why does that brain-body connection improve only temporarily before it goes away? Why can’t we somehow reset our brain states more permanently?
In an attempt to understand more, I’ve participated in as many clinical trials as possible, with both observational and interventional studies. I’ve also served on grant review committees for the Parkinson’s Foundation and Department of Defense Congressionally Directed Medical Research Programs, which has been enlightening on many levels.
In addition, I’ve become consumed with reading and learning about this medical field. Two of my favorite scientists are Michael Levin, whose lab wants to “develop fundamental understanding of how minds of all kinds arise, scale, persist, and change,” and Karl Friston, a neuroscientist whose free energy principle hopes to explain how the brain learns and processes information. I don’t doubt that amazing people like these two will help lead us to more crucial advances in solutions for neurodegenerative disorders at some point in the near future.
Yet better ways must exist to solve our problems. We have to engineer better brain-body communications. I encourage you to get involved with developing research in any way possible and to contribute from the critical perspective of the Parkinson’s patient.
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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