I'm not a smart person, and this is not a scientific theory, but the science on Parkinson's is very sketchy and I really like analogies so I am sharing this analogy that people should not give too much weight to:
This new post is "Good Sports Car vs Old Beat Up Truck". Why this analogy matters (even though I am most likely wrong) is because this mindset affects our strategies to try and stop and reverse PD progression (which has not really been shown to be possible).
So... Some people think of a PWP as a Good Sports Car that has an issue that needs to be addressed. Maybe there is some gunk in the fuel line that needs to be cleaned out, or some carbon on the spark plugs. Maybe the timing is just off. And maybe if we could clean out that gunk in the fuel line, clean those spark plugs, or adjust that timing, our Good Sports Car would be running great again!
Now... When you think about trying different things to fix a Good Sports Car, you keep trying different things until you find the right fix. You just bounce around from one singular thing to another trying to find the thing that is going to get that engine purring again.
But... What if PWP are not Good Sports Cars with some issue that needs to be addressed to get back to top performance? What if PWP are like Old Beat Up Trucks that have been damaged by a lack of oil changes, dirty fuel, being driven hard, and not being stored in a garage?
If I was an Old Beat Up Truck, I would accept that parts are damaged and tenuous and maybe stripped. I would get that Truck into a garage and NEVER leave it out in the weather again. I would check the fluids and change the fluids and make sure my fuel filter was clean and I would baby that truck. I'd make sure I only used the best fuel. I would have a detailed comprehensive plan to make sure all systems and components are getting the best care possible. If company visited I would not make an exception and drive my Old Beat Up Truck all night or try pulling a boat with it.
I would set down the best comprehensive multifaceted plan that I could come up with, and I would stick to it. I might tweak parts, but those tweaks would within the concepts of the plan. I would not jump from singular plan to singular plan and I would not do anything to the truck that would put the plan at risk.
And maybe, just maybe, if I had a plan, if I had a path, and if I stayed on that path and followed that plan, maybe my Old Beat Up Truck would stop deteriorating.
And because we are living beings, and not trucks, maybe, just maybe, over time, over years, components and systems would start slowly, incrementally, noticeably, improve.
I'm probably wrong, but this is the mindset I follow. I'll let you all know if 10 years if I was right, although if I am wrong, I will probably be letting you all know sooner
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Bolt_Upright
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Thanks Bolt, I like the analogy. When others see us PWP 'on medication' (especially those in the earlier stages of disease progression), it's easy to dismiss what you see (or don't see) and to think PD isn't having a massive visible issue and that the sports car analogy applies.
I do think one day we'll have better diagnostics (they already have some of these emerging capabilities in the lab at Oxford University) and will be better able to identify which fluid or part needs replaced/regreased/etc.
Here is a fascinating webinar from Oxford Uni on how they are pushing the boundaries of Parkinson's research that has given me a lot of hope...
Progress has been made - the National Plan to End Parkinson's Act is now a signed Bill and is focused on diagnosing, treating, preventing and curing Parkinson's. Here is the information on the Bill
No matter what we as humans do to protect our bodies from disease, we are all potential victims so to speak. Let's take cancer. One can exercise, avoid processed foods, eat healthy (which to some means no meats, no poultry), limit or avoid alcohol, do everything possible to keep their bodies and minds free from sickness and disease. My sister did all of these and had breast cancer and 7 years later lung cancer and 3 years later brain cancer and 2 years later the brain cancer (which couldn't be totally removed) is now in her central nervous system. So her car looked good on the outside and was well-maintained. This could be why she was able to fight the cancers and keep on living.
No matter how well you maintained your Truck, wear and tear on parts, rust, the environment, driving in inclement weather (even though garaged when not in use), everything can affect how the Truck works. Changing the parts, getting tune ups will keep the car running well and its performance improve for an unknown period of time. However, the Truck cannot totally prevent rust and simple wear and tear. Eventually the Truck will become undriveable.
Note: I wasn't comparing cancer to Parkinson's or Parkinson's to cancer - this is just currently on my mind as my sister is on Hospice Care living with intent as best she can day-by-day. My husband, the love of my life has Parkinson's, and his symptoms are progressing even though he was only diagnosed in2017 - other medical conditions, and age and who else knows what are part of the mix and there is nothing he or I can do "fix" or stop the changes from occurring. I can't keep this Old Truck in the house like I did during the Pandemic!
Bolt, don't keep yourself in a "garage" or try to avoid risks. There are risks every day but one cannot be consumed with worrying about what could possibly happen to ourselves each day. Wake up each morning, be kind to others and yourself, do your best to keep your body and mind nourished, help others, do things that bring joy, laughter, learning, comfort to your life. Live each day with intent on your Journey with Parkinson's with routines, plans, changing the road map and paths you take as needed.
Bolt, I did enjoy your analogy.
Let's not get swallowed up in our diseases and how they change lives of the person with the disease and their Caregivers (family, friends, social groups, and more). Make your plans, have your personal roadmap for this Parkinson's Journey, take a different route as needed if that route becomes bumpy. No road is perfect, all roads change and not smooth and straight, there are forks, twists and turns.
And continue to hope that the scientists and powers that be find a cure and a way to end Parkinson's.
I'm so sorry to hear about your sister Linda. My sister in-law just passed from cancer in hospice last month (we just had the memorial Sunday).
One impression I do not want to give is that of blaming people for their condition due to lifestyle changes. People can live pristine lives and still get sick or get worse or pass. I know from experience that sometimes "healthy living" talk can victimize people that have already been victimized by fate.
I'm going to expand on this a bit. Analogies are a good conversation starter, but the core point should also be explained:
Again: Nobody really knows how all of this stuff works. Least of all me. My views are probably not as rosy as some, but they illuminate a path (I think).
So... The Good Sports Car. It's a good car. It's a great car. Something is wrong with it that can be fixed without replacing parts (replacing parts is a WHOLE other discussion. I can't replace parts on my own). It's a great car and if I can clean out a line or adjust something it will be great again. For a human this would be akin to an athlete with an infection. If you can treat the infection the athlete will rebound and all will be well.
The Beat Up Truck symbolizes that whatever happened to the truck did damage. Probably did damage to multiple systems. Maybe somebody put sugar in the gas tank. Maybe we stripped gears downshifting pulling a load downhill. Things are damaged. You can clean your fuel tank and lines and carb and you can tinker with your clutch and gears and you can get the truck on the road, but things will always be tenuous.
One thing people don't seem to know for sure about PD is:
A) Does PD start and then progress on its own regardless of inputs to the system? This seems the most likely).
B) Does PD need a continued supply of whatever kicked off the process to continue to progress? Or maybe there is a tipping point at which PD can continue without any further encouragement? For example, there are those (kind of fringe) that believe PD starts in the gut and travels to the brain through the Vagus nerve. What this theory does not answer is whether stopping the supply of whatever (lectins?) is moving through the Vagus nerve will stop the progression. I would expect that once we have pumped some bad stuff into the brain it will remain for awhile and some damage is done, but I don't know if shutting off that tap will limit the damage.
This is how my behavior is modified by my old truck metaphor:
- If I was a sports car I drive it hard and make a series of unrelated attempts to find the trick that will clear the clog or align the part or adjust the timing to make things perfect again. In the mean time, I would continue to take care of the car as I always had.
- If I was a beat up old truck, I would make a list of rules to make sure I did not risk damaging the truck more. I would ALWAYS get my fuel at a Marathon station where they do not add Ethanol to the gas. I would identify the best fuel, the best oil, the best fluids, the best maintenance schedule and if my brother asked to, just this once, use my truck to help him move a big old piano, I would be a hard "no".
Here are human examples: I think PD may be caused/fed by low level infections, I think PD is an autoimmune disease, I think intestinal permeability contributes, and I think an out of whack microbiome contributes to the problem. All of these issues get attention every day.
One last example: I have drank more alcohol than any person should ever drink. When I was a sports car I could close bars 6 nights a week and still (usually) get my self to work the next morning no problem. I was a sports car with lots of tread on my tires. I was an iron man. I got knocked down and bounced back up. I don't drink now. Ever. There is no buffer. I do not bounce back.
Okay, I will shut up now. I do live a complete life and I do not obsess over these things. I just stick to my maintenance schedule.
Most importantly: I have a high school degree and am probably wrong about all of this.
Trust me, I am not humble or insecure. I just want people to be fully aware of the education that goes with my opinionation (Yes, I made up that word).
Thank you Bolt for the fun read with the sports car/old truck analogy, and all the responses. I’ve listened to more than my share of Bible based sermons, and find that a lot of the best preachers use analogies a lot. But I’ve also observed that all analogies break down when you carry them too far. That being said, I still want to as my two bits to this discussion. Some vehicle models are much better built than others. One such well built model is the Toyota Corolla 2003-2010. They just go and go and go. They are simple and rugged and hard to kill. You almost need an accident to get them off the road. Some people are like that, and I admire their resilience. But whether car or person, we all eventually wear out, rust out, or get taken out by something big, (like a moose) and at some point the game is over. My advice is to take good care of your body and your car, but don’t obsess over either one. And drive carefully and joyfully!
Whichever car we are we are fuel injected with a complex CPU. Something (apparently a-syn) is causing some short circuiting (wires kink up so the terminals no longer fire plugs properly) within the CPU, but even some of the best and brightest mechanics have not been able to figure out what is causing it. In the mean time the best thing seems to put in high grade fuel and take it out and run it as hard as you can almost every day
While this is an amusing and somewhat pertinent post, there is a glaring inaccuracy.
You say " strategies to try and stop and reverse PD progression (which has not really been shown to be possible)." This is simply not true.
We now know much of what causes disorders like PD, and there are many who have reversed PD and been judged to have recovered by neurologists even though their authorities won't let them talk about it.
So let's focus on finding each person's causes and developing strategies to recover.
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PD - is it due to virus after all?
Saw this and wanted to share:
Sense of smell
Supplement Cocktail is working (Massive B1 OD) or is it the Fatty15
The fittest PWP
