DOPAMINe critically low.

NEURONS NEED MORE.

OFF-TIME crash IMMINENT.

Houston, we’d like to Avoid a crash or being lost in space.

“The Experts - They don’t know”

What is the procedure for living with Parkinson’s?

Sorry, It is still called a “movement disorder” - As if shaky hands were the worst part of it.

One spike and you're toast.

You’re too low!

Avoid spikes in dopamine burn.

Get in the zone & stay level!

energy and You

Parkinson's is an energy deficiency of the nervous system, a simple shortage of the electricity that runs everything. Like an intermittent power outage in the home affects everything, or in this case, a power shortage on board the Apollo spacecraft.

I face this daily, like some sick film producer’s combination of Apollo 13 and Ground Hog Day.

Your Mileage may vary

Each PD case is unique. The things I share here are my own observations from my own experiences with my own case of Parkinson's. I’m not a neurologist or even a medical professional. I am not offering medical advice. I’m simply telling my own story.

As for details about my diagnose, I'll save that for another time. Today is about dealing with it now.

Talk to your doctor

I hope you find my story helpful and encouraging. If anything in it triggers ideas about your own health, as always,, talk to your doctor about it. Thank you!

Understand your limits.
StUdy the patterns

Practice awareness of your experiences with PD. Look for clues that may lead to ways to improve your daily experience. Share these observations with your doctors. Physicians depend on this information to provide the best treatment strategy.

Ask for help from trusted experts and your support group. Be aware of relevant research and technology that might be helpful.

If you want to understand Parkinson’s Disease

Watch Apollo 13 again

Consider the critical scene where they realized the energy on board was not enough to perform the mission as planned or return the astronauts to Earth.

Lieutenant Dan goes into the simulator to figure out how they can do all the critical operations with limited energy and becomes the hero of this story.

And my point is?

This is similar to what a person with Parkinson’s must do daily. Dealing with an enegy deficiency and avoiding creating spikes in demand is challenging. Who wants to crash or be lost in space?

A diagnosis can alter all your goals

You were on your way the moon, then…

Suddenly all the resources you had planned for the moon are required just to get through the day.

You have a new mission: studying Parkinson’s

Yes, it’s a stupid hobby, but you’re stuck with it because your quality of life depends on it

Dopamine Burners & Bonfires

I have noticed that some activities are dopamine burners, meaning, they exacerbate the shortage of dopamine I already have. Some in fact, which are information intense are veritable bonfires of dopamine, using up stores of the chemical. These can feel like an irresponsible party that used this week's provision in a single day.

Dopamine Generators

Others are actually dopamine generators. meaning, the more I engage in these thing the more stable my dopamine levels appear to be through the day and the better my quality of life is overall.

Dopamine neutral (sustainers)

There’s a third category I call dopamine neutral. These are activities that are sustainable, like aerobic exercise doesn’t use more oxygen than the body can take in during exercise, These activities seem to not use more dopamine that is generated during them.

Dopamine Burners list

Activities that burn dopamine

mind-only, no physical
Stress & Worry (bonfire)
Information-intensive, tasks, studying, abstract, piecemeal, scattered, haphazard, complex information
Finances - paying bills bills, taxes, filling out forms
Multitasking
Sudden task shifting (bonfire)
Disruptions & distractions
conflict (bonfire)
complex decisions
Writing (some times)
Executive tasks - scheduling,

Dopamine generators list

Activities that generate dopamine

Hands-on, involving mind & body in unison.
Writing (some times) - Synthesizing information already on board. Story-telling, organizing.
Creative activities
Visual creativity
gardening
Sleep
exercise
prayer & meditation
Music
walking
Talking about big picture concepts ideas

Dopamine Neutral list

Dopamine neutral - Appear to neither deplete nor generate levels. - Sustainable

conversations
Reading (no test)
Preforming familiar tasks such as household chores, driving,
Family & friends , grand kids
social media
watching TV
Writing (some times)
games

Dopamine: Good, better, & Best

All dopamine is not created equal. I have become a connoisseur. Dopamine replacement drugs continue to improve and I am very grateful for them. They have been a huge help to me. These include Rytary and others.

However, they are a wooden leg for the brain. I don’t know the chemistry and cannot explain the physiology, I just know that in my experience, my body’s natural dopamine is superior to the artificial replacement. How much of that difference is chemical or due to the intake process, via digestion, etc. I don’t know.

I do know that I have far better days when I front-load my day with activities that are dopamine generators. I also found that doing this alleviates the need for my medication doses early in the day which reduces likelihood of dyskinesia.

dyskinesia :-(

Dyskinesia is involuntary muscle movements. It is awful and I hate it. It is a typical side effect of the dopamine replacement therapy. I am told and can get worse over time. Im not the one to explain why, but I know excess artificial dopamine causes this unpleasant phenomenon while my body’s naturally-produced dopamine in large amounts does not.

The Whole equation

Whatever the technical explanation is, I can tell you that the dyskinesia alone was for me a huge motivator to look for better answers than simply taking dopamine replacement drugs alone. I would note that many prescriptions might not take into account fluctuations in the natural dopamine you may have onboard.

As of today, there is no method that I am aware of to measure dopamine. For example, a diabetic might measure their changing insulin levels before adjusting an insulin dose. It is up to the patient and physician to address this together.

Activities help stay in The Zone

Dopamine in the just right levels, not too much, not too low, is everything with Parkinson’s. Finding a sequence of activities that help keep it steady can be a big help.

Too High = Dyskinesia

Just right Zone

Too low = crash or Lost in Space

Conclusion

My catharsis is that I am learning how to self-manage my dopamine levels via my activities. This is enabling me to better manage my PD symptoms. Avoiding off-time and dyskinesia is a big deal for me. They are my enemies.

Still, staying in that zone requires a lot of attention, which ironically is the thing often in short supply. That’s how it goes. :-)

Art Therapy

We often say things like certain activities are therapeutic, but now I have come to take it very seriously. I know this is not only true, but has become critical to my quality of life. Art, to me was always a love, now it is essential. Art Therapy is no longer just an expression. It is an essential.

discovery

In my case, I became increasingly self-aware over time of subtle signals of my body telling me its dopamine level status. This has taken lot of effort, but is well worth it.

Universal?

I don’t know if the signals I sense are what others do or not. I would try to guess beyond the classic tremors. I would encourage each person to pay attention to your own body and share all your observations with your physician.

The Daily recipe

Like the recipe of a special sequence lieutenant Dan worked out for the Apollo 13 crew, I have a special sequence of activities I follow daily to avoid crashing.

Redo, only this time…

Like Bill Murray, I try every day to improve on my formula. It uses all the observation and analysis know-how I have developed over my entire career of human factors research. Some days are spent just trying to get to Ok.

The sequence matters

I have discovered that I need to start the day rested, then immediately dig into a dopamine generator activity, One that is very engaging that will get a nice big batch of dopamine simmering to last the entire day in the mind. Failing to do this first thing means downtime.

Multi-tasking drain

Starting the day with dopamine burners, such as a lot of fragmented tasks, or the infamous multitasking with interruptions means the day will probably be a total loss. Such tasks can be done later after the healthy pattern has been established. But not first.

Control of my time

One thing that is utterly clear is that in order to have any hope of managing my symptoms well, I must be in control of my own schedule and how I spend my time. Trying to do this while working in the corporate environment was a train wreck in the making.

Expert assistance

I am fortunate that my lovely wife of 40 years is an RN with medical knowledge and wisdom invaluable in navigating the healthcare dimension of this journey. But it takes up all her time as well. The fact is that my Parkinson’s caused both of us to retire from our careers far sooner than we had planned.

Random Fails

Even after all of this effort, I frequently fail. Some days when I‘m sure I’ve done everything correctly, Parkinson’s still kicks my butt anyway, No explanation given.

The invader

In the end, Parkinson’s is an uninvited and unwelcome houseguest that moves in and messes up all your plans. I would be glad to be rid of it.

What? No metrics?

I am dismayed by the lack of metrics and the means to gather them to assist in the management of Parkinson’s. Despite all the dedicated people and institutions devoted to the PD cause, I am surprised to find there is no means for ongoing monitoring of dopamine levels,

My expectations

In business, we are addicts of ongoing data to inform and guide decisions. Without a doubt, data is a critical part of healthcare too, from acute care to treating chronic conditions such as diabetes. Yet, there is nothing to monitor the ongoing fluctuation of dopamine levels and/or the neurological activity directly associated with it? And no one seems to notice or care. Really? What’s up with that?

Apathey

Worst of all, it seems that treatment plans don’t even consider that these these levels natural fluctuate over time throughout the day. It seems that everyone is content to just ignore the missing piece of the equation. I had heard that apathy is a symptom of Parkinson’s. No one told me it also afflicts those treating PD.

Impact

Omitting metrics from the treatment equation is a serious deficiency in my view. Maybe others are willing to simply accept this and pretend it doesn’t matter. But it matters to me. It affects my quality of life a great deal. And I believe it impacts other patients too.

We have the technology

I believe the technology exists to do this. Its just that no one has gotten around to it yet. I would be glad to help do something about that if I can. Its not hard for me to conceive of a plan for researching the topic and possibly developing product requirements.

Keep me informed

If you hear of any research related to this topic, “Tools for real time measuring fluctuations in dopamine levels and related neurological activity”, please reach out to me at contact@belveal.com

I must be an astronaut

For those of you who feel like astronauts, I would like to share these art pieces I made for a band named “All the Astronauts”. Learn more about them at alltheastronauts.com

We are Sojourners

See this metal sculpture piece that I am using to tell my Parkinson’s story. I call him “Sojourneyman”. https://www.belveal.com/blog/good-old-future

Sculpture, the Story Teller

Sculpture is the great story teller of civilization, outlasting papyrus, paper, and pixels. It waits patiently for each new audience to be born. So, I wondered, "Why not enlist this figure I just completed which I call "Sojourneyman" to tell my own story? See https://lnkd.in/gK3fvN-H #sculpture #sojourner

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