A Fresh Look at Parkinson’s Self-Management
The power of the human mind to reshape itself, adapt to even the most traumatic of events, is a gift given to me by the head injury patients from my past clinical experience. Their courage inspired me to find a scientific model to help me with my own Parkinson’s disease (PD) brain injury.
Individualized presentation explained by the spectrum stage theory serves as the scientific foundation for my PD self-management efforts. Building on this is an understanding of the role of the second dopamine center and its effects when damaged by PD.
For an easy-to-use brain model, I have simplified it. There is a broken autopilot loop and a broken auto brain loop that episodically display a flicker effect. My thoughts and actions have an impact on the conditions that increase or decrease the severity of the flicker effect. I can act and think in ways that limit the problems associated with a broken PD brain, especially those associated with the broken autopilot and the broken auto brain.
I think of the PD brain as having a noisy, idle state, like when the lawn mower carburetor gets clogged. When it can’t get the proper fuel, starting the gas-guzzling grass cutter results in rattles and belches and flickers. It doesn’t hum along nicely in idle, and neither do I.
Like the lawn mower, I need clean access to nerve communication fuel for my PD brain and body to work better in synchronization. When I can manage the flicker effects, there seems to be more clean fuel in the tank.
In the broken PD brain model, both the autopilot and auto brain flicker malfunction episodically — more severely on some days. Like the lawn mower, my PD brain has days where the well of resources, the fuel tank, gets depleted. My body/brain operates in fits and starts. It flickers. My goal is to change the intensity and severity of the flicker effects to reduce the worst of times — those ugly days.
I start with the following three assumptions:
- Exercise supports homeostasis and PD self-management.
- Disruptions in homeostasis increase the flicker effect, which then decreases my resources for managing symptoms.
- Conscious control can be exercised over some aspects of the flicker effect. Doing so increases the well of resources.
These three assumptions turn into a PD self-management plan:
- Proper exercise is paramount.
- Don’t jerk yourself around. Seek equilibrium.
- Develop a brain-training workaround to deal with the broken autopilot and auto brain.
My PD self-management plan tries to do exactly that: restore homeostasis and recalibrate my tolerance for the disruption that PD causes.
Disrupted homeostasis is another term for stress on the whole body. In an article published in the journal Current Biology, researchers state:
“When internal or external circumstances give rise to a situation that takes, or threatens to take, the individual out of its zone of tolerance for one or a number of parameters, or cause it direct harm, the organism has to do the following: recognise the danger, mount a stress response that facilitates evasive action, restore homeostasis, repair any resulting damage, and, if appropriate, recalibrate the homeostatic set points and tolerance zones in the light of the new environmental circumstances.”
Every day is a new day for my PD management. Stress may come from any source, anticipated or unexpected. If left unattended, my flicker effect of symptoms can blink on and off erratically. It is then that I must sit, breathe, and manage my brain and body. If I don’t, it just gets worse, and there are more ugly days.
I have found that the cumulative effect of proper exercise, equilibrium, and brain retraining, over years of dedicated practice, makes a huge difference in the frequency of ugly days. It is the symbiosis of doing all three that yields better results. Like the lawn mower, my PD body works better when there is a steady flow of fuel, and plenty left in the tank.
This PD self-management program requires that I show up every day prepared and ready to work all day on improving how I live with this chronic illness. I am learning all over again even the simplest of things. I don’t simply walk, because that uses the broken autopilot. Instead, I “perform,” being ever mindful of each movement during the walking process.
I am still exploring the details of this PD self-management program. I have always said, “If I can’t walk it, I won’t talk it.” But thus far, I am excited about its potential for improving quality of life.
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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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Michel Planquart
Thank you for this inspiring article. Managing my symptoms has become a full-time job. Drugs have a role to play but self management is critical indeed. Meditation deserves to be emphasised.
Dale Schilling
Had a wonderful summer vacation but very stressful with changes has taken me weeks to recover I'd like to know more about the autopilot I try and push through exercise and do more than I should it leaves me worse
mike
For me Parkinson’s self management is using the tools ,exercise medication, good diet, and listening to professionals.
To controls things I am lucky because I love working out. Push, push then push some more that is the only way I can control my illness. It is not easy but it is doable. Blessings, Mike
judith griffin
Dr.C, I have been reading this column for over a year now and this is by far the best piece that I have read about living with Parkinson's. I cringe when I read well meaning posts by relatives and friends discussing treatment options for their loved ones in rather early stage Parkinson's. The key to dealing with this disease (if it is A disease) is to empower the afflicted to take charge of their lives, their disease, their therapies, and their attitude (must be an attitude of gratitude). Forgot about all those dazzling ,dazzling neurological terms and all those astounding drugs, neurologists advocate as first and foremost the best treatment options (they are good treatment options in many cases but never a one size fits all). I like the terms you use like "flicker effect" and "auto pilot". and "bad connections" along with other descriptions of the Parkinson's effect from empathetic sufferers and true caregivers who indulge in similar "down on the farm" neurological language". Life can never be about the destination it is only about the journey and the control we only can exert on the quality of our life. Movement is key, vital, important, and the most relevant thing one can do. To reduce it to the vernacular, when the diagnosis is made, one is allowed to gulp and then it is off and on----"off your ass and on your feet!" Thanks for lighting my fire Dr. C.! You are the best!
Mary Bean
My husband has just been diagnosed with Parkinson's. Thank you for this support.
Susan Rivera
Three cheers for an inspirational article. I wish more contributions like this were offered.
upa upadaa
I have been diagnosed as PD, patient five years back. The worst I heard from my medical and others around me is that "i will get worse with time so on". I think this attitude is not helpful. At the same there are many stories where PD patients have overcome these problems through regular exercises and mind controls. I think time has come PD patients think positively and look at it as an another illness that can be overcome, through a combination of actions (may be including medical drugs). But change in he way people look at and discuss must change..
Jose Diaz
I love this understanding and approach!!!!
Susan
Thank you for this article it couldn't cone at a worse time fir me as I am all flickered out. I sprained/tore my MCL.. well you have to immobilize the knee and rest it for 4 to 6 weeks. No excessive walking, bending, squatting, PT, etc... on Saturday at my 2 week mark I met with the gifted PT of 5 years said get on the recumbent bike and I was able to slowly get me knee loosened enough but far from the speed and resistance as I used do before and also did single leg lifts on the leg press and finishing with some gentle messaging and icing it. He recommended getting a recumbent bike so I ordered a foldable recumbent bike along with a brace. I really miss walking everyday, garden work, playing with the dogs and then boom....my lights are on flash. So I hope after the PT and Doctor talk today they will allow me to continue on the recumbent bike as some form of exercise. Even if that's a no I need to do upper body exercises with weights sitting down. Anyone else there been here?? I have been on Azilect for 2 years which has and controls all of my symptoms and didn’t even know that what I have been experiencing for the last 3 weeks isn't in my head.
Alan Tobey
I deeply agree with this model and approach to living with PD. I basically “keep an eye on” the state of what Dr.. C calls the auto-pilot all day long to help me decide if a deliberate intervention is called for.
Yet I wonder if “autopilot” is a necessary construct . Would it be just as useful to substitute “dopamine level” and think that if that is sufficient the autopilot will behave.
And I increasingly am exploring a more evolutionary model. Since today’s autopilot regime did not instantly appear in its current state, in at least some case earlier versions are also probably retrievable from the same storage facility as the current version (the absence of attention paid to data structures and their use is a major weakness in articles like Dr. C.’s, which though extremely useful have to be consigned to “first person anecdote” status, and therefor cannot be invoked as credible science. Getting to that level will be a major challenge in coming years.)
Dr. C
Hi Alan ~ The purpose of my columns is not to write "credible academic science" but rather to inform, enlighten, and explore possibilities. You can always check the hyperlinks to the scientific and medical research! Thanks for your insights into the problems that science is having with understanding Parkinson's.
Dr. C.