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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Comments
Mike P.
I agree with your point. There is so much known about PD but we just don’t seem to be able to move towards a cure. Why?
Doc Irish
It's so frustrating. Research takes so long. There is still so much focus on trying to understand the micro mechanics. I wish there was a good macro model for what happens with the brain's signaling pathways.
Jim Lohr
I believe that because Medicare and all insurers want to have a single classification or billing code, there was no incentive for the medical community to see this affliction dissected into the many diseases it actually is.
Doc Irish
Interesting. There is a lot to unpack regarding the healthcare system, financial incentives for different stakeholders, and research funding. "many diseases" is very true - many different manifestations under one umbrella that I consider Perception Dissociation (aka "PD")... including OCD, tinnitus, etc.
Dave Garrett
Hi Doc
I’m 3 years in and have followed a similar, but not quite as aggressive path to yours. I’m a bit easier on myself from a diet perspective.
I share your frustration, but have come to the same conclusion as Jim. When asked what the future might look like the most common refrain from neurologists is, “everybody’s different. “, which to me means “different people have different flavors of the same general category of disease”, This doesn’t mean we give up. In fact in makes me even more hopeful about the potential for targeted therapies that we’ll hopefully see from the application of AI to everything from genetic data to the the creation of new drug molecules/compounds.
Maybe it just looks complex because we’re looking at it as one big thing. Maybe it’s a bunch of simpler, interconnected challenges, each one easier to solve if you can grind through a lot of data - “thinking” about it from new angles like only a neural network can.
I’m old enough to remember when people thought ulcers were lifelong problems requiring surgery. Then by chance folks figured out these were just simple infections curable with a simple antibiotic.
Maybe we’ll all be helped or cured sooner than we think - but incrementally.
Doc Irish
Hey Dave, how great would it be if we could truly compare the development and success of therapies for both ulcers and Parkinson's?! Your hopefulness is a beautiful thing. We definitely do not give up. And I agree that the application of AI in one form or another will be instrumental, I wonder about what are the relevant data points.
Lisa Martinelli
Hi Doc Irish, Love the name! My dad had the disease. I read recently only 10% of levodopa cardopa crosses the blood brain barrier? Why is that? And one neurologist said to this pt I assist, don't bother taking the med at bedtime, as you're not getting up and moving around, so it's unnecessary. But, a recent press release is touting the new med, 24 hr infusion of levodopa caradoba time released. Conflicting info ? Your thoughts
Doc Irish
Hi Lisa, thanks... and you also probably see that I'm not a real "Doc"! So I cannot give medical advice but in general, the drug only lasts for a certain amount of time, so you don't necessarily need it at night while you're sleeping. The infusion approach is interesting because during the day it could potentially deliver small steady doses when needed in order to avoid big highs and lows of the effects being on or off. Regarding the blood brain barrier - I don't really know but I believe it's rare to get even 10% past that protective barrier.
Keir
Dr. Irish:
My Husband is 79. He retired after 52 years of being a semi-interventional Cardiologist. For decades he wore a very heavy unbalanced lead apron and thyroid collar to perform heart caths. On these days, he was in the lab around 8 hours. The weight of those aprons & collars was really heavy. It was never counterbalanced for years. He worked on average 18 hours per day. He took his own call 24/7. He could not stand the idea of his patients not having the best efforts of care from anyone else. He was always this way!!! He knew massive details for each patient and their families. They all adored him.
Throw into the mix: He was subjected to 2 severe MVAs in one year only 4-5 months apart. Resulting in trauma surgeries.
He retired in 2018. But, by mid-2019, he started with symptoms. He was 74. The Parkinson’s seemed to pound him out. We’ve seen several very reputable specialists over the years. Each approach has merely been a bandaid. Where this disease has him now?? If he could see himself he would be crushed. It crushes me to tears.
He rarely has moments of rage and cruelty. But, he has several moments of thinking he’s still working and worrying about everyone all the time. He calls 911 because he’s worrying about the Police , Fire Department, Hospitals, EMS & Military. He worries they’re not being cared for at all. He thinks I’m his hired 24/7 caregiver. He will ask me to gather his white coat and equipment in case he needs to go take care of help all of these warriors. Having to just roll with the flow of his concerns, I carefully turn conversations in other directions.
He is no longer a candidate for any new options of treatment. His co-morbidities outweigh everything. He had a stroke in 2024. I am his 24/7 caregiver. I will not subject him to being vulnerable by bringing strangers into our home. Nor will I transfer him to a facility. We’ve been together for 33 years. We are 22 years apart. I truly believe we were meant to be together. Our only marriage. We have 1 child. She’s been raised from 6 weeks until 17 in the hospital where he was chief of Cardiology. She never resented his deep work dedication and ethics. She said at age 3, she was going to be a doctor. SHE IS A DOCTOR;) He never forgets her. He introduces me to her and we roll with it. Some tell me he should be corrected about this problem. I did ,maybe 3 times. It created anger and crying in his response. That was never his personality!! So I tell anyone who thinks that he needs to be corrected, to piss off. HE IS THE UNIVERSE TO ME!! Nobody better harm him in any way!!
I donate to a local Parkinson’s Foundation in his HONOR!
This may be a post you’ve never expected. But, I never expected such a lovely, strong, brilliant, caring, enthusiastic Man to be pounded by such a disease. I have my fists up and I stand in front of him no matter what.
Doc Irish
THANK YOU, KEIR, from the bottom of my heart. I have tears streaming down my face. It's an amazing love letter and a tragic, wonderful, testament to you and your family. You have certainly honored your husband and I recognize you as the hero of this story. It's what scares me the most for my beautiful wife and family. I wish you all the best. Thank you so much for sharing this.
Elaine Corn Soohoo
You are describing me. Obsessed. Five months ago, my husband were hit by a truck. As passenger, my L5 was fractured. I resent that I've not been able to do my Rock Steady, usually as brutal a workout as I could make it. I fear I might regress. I've had this disease 16 years. It's inherited, of the LRRK2 variety. I'm in a research study specifically addressing this. I'm no longer interested in detection, early or otherwise. I want a cure. You'd think that since Dr. Parkinson discovered the disease that bears his name in 1817-- three years after the end of the War of 1812 -- that we'd be done and gone with our scourge. But, nothing. I'm still pissed off this happened to me. And so, the research, the reading, the obsession with a cure. Every day, it seems there's another ah-ha! moment from around the world of study. Gut-brain? I really don't think so.
Doc Irish
Sorry to hear we are in the same club, Elaine. I think I broke a bone in my hand at RSB because I was taking out so much frustration. Dealing with too much other stuff to worry about something trivial like a fractured bone though... I do find the obsession helps me though. In a weird twisted way the science is fascinating, especially because you can feel how it works. At a level that most doctors or scientists just can't grasp. And I couldn't agree more; observational/detection studies are fine but I want more experiments testing interventions.
Brian Cox
Hi Doc,
I imagine that you have looked into photobiomodulation (PBM). I was diagnosed with RBD in 2020 and thankfully have not converted to any motor symptoms yet and so no PD diagnosis. From my read of the RBD literature, it seems it is only a matter of time. I too have embraced exercise, diet, intermittent fasting. One of my favorite researchers is Prof. Bloem. Would love to hear your thoughts about PBM and any other treatments that might delay my progression.
Doc Irish
Hi Brian,
I like Prof. Bloem as well. I'm not super familiar with RBD (or PBM) but I view it as part of the prodromal or "purgatory" stage prior to Parkinson's Disease. Again, I'm not a real Doc, but in general, I feel it's one of many different manifestations that fall under the umbrella problem of Perception Dissociation (aka PD). My guess about RBD is that it leads to Parkinson's and related complications because an underlying dysfunction with saccadic suppression, which is essentially a similar problem that leads to a failure of sensory attenuation, which is the source of initiating motor movement. As the American Brain Foundation's philosophy puts it, “Cure One, Cure Many” could apply across a spectrum of brain disorders. My best response regarding PBM... try it and see how it works for you. Sorry I don't have better feedback. Thanks for reaching out - wishing you all the best.