Sign Your Life Away

February 16, 2018

A week before the DBS operation I signed the go ahead with my deep brain stimulation surgery on Feb 16. legal liability thing so I was made aware of all the potential risks of surgery, all the standards like stoke, paralysis and death. I read through like I read through the terms of new software, not.

But then i sat back and reflected on the power of my signature, a mere scratch of ink on a page, an how it gives assent for a huge go ahead the will change life as I currently live it.

Tangent>> I want to note the irony of my first PD symptoms were difficult signing my name (and brushing my teeth. ) PD usually starts of on one side of the body, for me the right side, for Michael J Fox it all began with a twitching baby finger on his left hand. That marked the beginning of the new me.

The signature as a cosmic pivot point. An abupt turn from our current reality into a new venture. has been the marque where by the old self is left behind/cast off and a new self opens. Here are a few thresholds where I signed on the dotted line and astral projected to a new reality, or newer unimagined version of me

Freedom  My first memorable signature was my drivers license. I was beyond excited to be an official driver. (i had driven tractors, hay trucks, assorted 1/2 tons on the dirt roads and fields of our family farm since i could reach the pedals. I even put many miles on my first car at age 15, a 1964 mini. In Parrsboro the driver inspector comes from Amherst to test every Friday at the the legion. My 16th birthday was the day before. Heaven. Thus began a long and beautiful relationship with the auto and the joy of the open road. One example of a life time of signatures.

Other signature moments where life as we knew it was transformed and new identity or life began include:

  • Student loan agreement for enabling me to attend University
  • Credit card application
  • Job Contract with school board as teacher or ns gov position as family violence prevention training officer
  • One signature to get married the first time and about 7 signatures to get unmarried.

Next time you pick up a pen as you sign your old life away to make ready for the new you to emerge, just remember, you’ve done it once or twice before.


Last 100 Words

February 16, 2018

The two symptoms of Parkinon’s that DBS does not claim to help are balance and voice. If it’s an issue now it will likely still be an issue after. Balance is no big deal for me but my voice quality is. When my med cycle begins to wear off I can sense my right leg starting to drag and my voice getting weak. And in the case of buddy at the shop that sold me an electric motor, my voice dropped out entirely. Even my best tricks for my music therapist wouldnt grab. I could only connect in gestures and spit out a few phrases. I returned the motor the next day with full voice and a PDEduK8 moment to explain why.

So DBS doesn’t promise to improve voice and may make it worse. That got me thinking  as to what words i would speak last before being put under. What would be the last words you would utter? Sure there are other ways to communicate, reference ASL American Sign Language and that cool voice generator jigger that Stephen Hawking uses.

Imagine you had a condition where you knew you wouldn’t be able to orally speak words. What would be your last 100 words? Make a list of which words pop to mind. Assuming the prepositions and joining words are gone or do not count what would be your top 10? Reflection : How does choosing that list provide insight or parallels into your driving values and principles.

The motivational speaker in me is having fun right now!

AND what if this mysterious condition were tweaked a bit and you had only 100 words that you could keep and use unfettered for the remainder of your life. If you could only speak from a vocabulary of 100 words what would they be? Would the last 100 word list be similar than the only 100 words list?

Start with thank you and run your list from there. i look forward with curiousty.




Before DBS #2 – A day in the life?

February 16, 2018

I wonder how it all changes?
Before DBS #2

Up and doing yoga from 530. No dystonia (twisting out left calf muscle) today. Light stagger took usual pills 350mg levodopa with bowl of Kashi cereal at 7:30 kicked in at 8:15 with a typical little right leg wiggle and dance as prelude about 5 min before i smooth out. Just in time to walk smoothly to school and back with kids. I thought we had half a chance to get there on time but late as usual, Vance “fell” dramatically 25 times (he counted each dramatic flop) on the black ice. i vowed never to “hurry up” a kid being creative.

Leg starts to stiffen at 9:15. Next pills 9:20 with Helle’s heavy bread and cherry jam, kicks in about 45 min later. Dyskinetic (involuntary swing and swaying) at my desk past 1130.

12 40 go “off” as stiff set in again. Andreas home made chix soup probably not a good idea to have protein then chase it with levodopa pills that lose the competition for absorption up against protein. You’d thínk i’d learn by now after 13 years (this May) although i didnt start drugs till or 5 years into it. i was  at PD world congress in glasgow in 2010 and don’t recall taking much pills.

2pm still stiff since 1240 pills didn t kick in but will drive to get kids it will take a long time to walk. For some reason walking stiff doesn’t affect driving (or bike riding), my reflexes are still sharp. that was how i drove the famous white knuckle Amalfi coast road in italy last a may.

2pm Parents visit not talking very good but 2:15 try another round of pills. Pretty stiff picking kids up with Dad at 2:40 back “On” by 3 pm swaying and talking fine while mom and dad visited  and kids played.

Dropped off smooth movement at 6 and took last round of 350mg pill as directed to stop to be off for tomorrows DBs surgery. Note i left my azilect (rasagline) bottle at the cottage since the weekend, oops it was a mao-b inhibitor that costs 8$ per 1mg pill never did think it did much.

Vance and i shower till 9 and both kids wanted to sleep on either side but i need to be on the edge in order to getup. Fortunately Vance fell asleep while hannah and i having cereral so conflict avoided. Restless with mind racing about tomorrow and starting to feel hungry. 1am typing with both hands well and light stagger. Post this unusual day.

Ode to Nurse Nicki

February 15, 2018

Ode to Nurse Nicki

Nurse Nicki you’re the one.nurse nicki
You’re the one who is beside me this day.
With my shaved pate popping thru the plastic tent, like a newborn’s crown pausing to reflect on the worth of being exposed to this new bright, dry, cool world
and naively assuming withdrawal is an option.

You may dwell on the side of the sterile field with my exposed sahasrara* while I wallow in the bacteria of whatever tears, snot, sweat and pee ooze out of me

But you are still the one
on behalf of the hundreds in my caring community who are praying, thinking warm thoughts and holding loving and healing energy.

When your eyes reassure me with a sacred, comforting gaze, I see their eyes, as everyone looking though you reaffirming wordlessly that it’s going to be okay.

When your words comfort me, I hear the voices of all the beautiful people in my life who have ever spoken truth to ease my troubled heart.

You are still the one, representing the many.

When you find the funny, make me smile or otherwise add a twist in the sobriety of what is going on, you crack the tension for us all waiting our turn to lighten up.

When your hand is in mine caressing away doubt, I feel the hands of God reminding me that love is stronger than fear. I am at one time touched by all the hands who care for me, from the see through skin of Grams tender crooked hands to Andrea’s career scarred hands of un-conditional giving.

Nurse Nicki you are still the one to guide me though the turns of this procedure but we all know that you are not alone.

You are our conduit of compassion as you channel to me all the hope, healing and love of my community who believe in better.

If we have only one prayer it would be, “Thank You.”

*Sahasrara – Sanskrit name for new beginnings also the crown chakra connection to spirit and enlightenment pictured as 1000 petal lotus flower.

Questioning the Narrative

February 14, 2018

On a good morning i question if I need to be on this pill path i am currently on.
Video of me questioning the narrative on a good morning Feb 14 , 2018 here
Another good morning to question in August 2016

Most annoying symptoms are related to pill side effects not the challenge of the disease itself. I am waiting for medicine to close the gap between symptom management and curative cell rebuilding.

The understanding of PD narrative goes like this. Cells that produce dopamine, the hormone that regulates movement, die in an area of the brain known as the substantia Nigra. Theories as to why abound and we are zooming in on culprits like Larrk gene and folded lewy bodies as causes and therefore cure starting points.

All the while significant challenges to western medical viewpoint are also looming. The role of healthy fat Omega oils and coconut oil in brain health, the connection between gut bacteria i  our so called second brain what vagus nerve that links brain and gut has to do with that. I drink KOmbucha daily for gut health.

i am going ahead with DBS to be on the frontier of brain discoverer and exploration just in case the golden AHA! Eureka moment happens as symptom is overtaken by cause and ergo cure. Perhaps it will be discovered right in front of all along and revolutionize our understanding on the massive scale such as the game changing discovery of Doctor Ignaz Semmelweis discovery in 1860

Before DBS #1

February 14, 2018

I wonder how it all changes?

Before DBS #1 This is me playing bass Sept 2017 with dyskinsea (drug induced involuntary movement side effects) if you would have seen me at the book launch for Gift of the Hit Sample Peters PD Boogie from Gift of the Hit Book Launch Here

Áfter ? Typical results, no promises but a lot of people say they reduce meds so  by logic, less side affects.

PD EdUK8 Moment: When you see someone like myself or Michael J Fox swinging and swaying randomly (I call it the Parky Boogie) that movement is not Parkinson’s but rather a side effect of too much dopamine replacement meds. The medical term is called dyskinsea.

A classic PD symptom tremor is linear and repetitive on the same axis. Like foot shake up and down or your hand banging on a table over and over (without the table there) or hand shaking side to side so that a full glass of water will never reach your mouth. I am now thinking my dear aunt Polly who held a beacon of dignity and grace with her PD

Thankfully this not my default style. I am a stiff not a shaky paws.

Routine not Complacency

February 9, 2018

IMG_5014At my pre-op session at the QE!! i noticed a well worn spot on the elevators floor. It’s the spot where everyone on the elevator steps and pivots to push the buttons at arms length away. I we all had the exact same arm length the worn spot would be very small. How many feet have pivoted on that same spot day after day. I think its great. Little do people think of the reason that it’s so well trod = because it works. It’s most efficient place to stand, well foucssed effort that’s not to far back where you have to step ahead and if someone already there then the secret code and pecking order ordains the worn spot is the boss spot where we all honor the button boss for the duration of the ride as they affirm our desire and hopes by legitimization our destiny by committing our floor number to the matrix of memory that has come before. It’s an extraordinary routine and social ritual that i hope we honor.

So to is the routine protocol called Deep Brain Stimulation surgery. There is a big difference in confidence if my turn is the fifth one to be done or the 500th time.  It matters that tens of thousands of people have stepped forward on that spot to experience this procedure since it began 20 years ago.

And on a surgeon to patient level  it means something personal that my doc has a ritual that he follows. He personally shaves his patient’s head in addition to visualizing my particular procedure over and over. His lifetime of experience and study is compounded by all those ups and downs who have gone before, I get a sense he never steps on the same elevator twice, never complacent, always fresh and that helps my answer to the question, “going up?” when i hop on and trust the ride.