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.

Good Morning? awaken to the new normal

January 14, 2018

I had the honour of sharing my wellness keynote at every Parkinson’s conference hosted by provincial chapters across Canada, (and a few in the USA!) The keynote topic was “Four Dimensions of Living Well with Parkinson’s” view here. The themes 0f physical, emotional, mental and spiritual were explored with practical skills and tools.

The issue of sleep deprivation associated with PD is common. I joked with my audiences about getting silk bedsheets or silk PJs to help to turn over smoothy, but advised against both as your might slip like butter off  the bed.

Now its caught up to me. I have been blessed with the ability to sleep anywhere anytime. And i got the sleep gene from my Dad who is on record of actually falling asleep on a subway train careening and lurching on the squealing rails of the London Underground. One of my more famous moments was Dad and I having a midday nap in our rental car at battery park in St Johns, NF while we waited 10 hours for our red eye flight to Ireland. The police officer was forgiving.

Since January I have awoken on my own or to help our 15 year old Bichon off the bed to pee at his whining request. But i can’t get back to sleep like i used to. My test as to whether i can fall back to sleep is to take a long full inhale breathes thru the nose and 10 long exhales though my mouth. If that doesn’t work then I might as well and get up and get something done. Good Morning? awaken to the new normal.

Reactive, Naturally

January 6, 2018

We just had wicked bomb category storm on the east coast, alas no snow for us in Halifax, that would have been awesome, but i digress. It is still great to witness when the power dies how community comes to life together to help, especially NS Power Linemen (yes they are all men) I wrote about my gratitude for their passionate devotion to get the job done in the aftermath of Hurricane Juan. Not having having power is no joke in subzero temperature! So part of me resisted acting on my 9 year old daughter Hannah’s prank idea to shut off our own power and pretend. The prank was not to tell Mummy and brother.

The prank was on us as it actually did go out at 1am. When the power goes out in our house an alarm goes off in warning. This happened at 1 am and i sprang out of bed and I  ran half way down the hall before i opened my eyes. Our home was not on fire but I was PD free for a moment. My brain was literally flipped into flight mode in my brains hard drive and stiff and slow default were over-ridden. This has happened several times before. Once when Hannah was a toddler and tumbled down three steps. I was off the couch and had her in my arms, it seemed like i scooped her before she hit the floor. PD symptoms be damned. What’s going on, an Amygdala Hijack?

The similar experience happens when I play racquet ball. When a ball comes at me, I don’t think, i just react and whack. I realized it wasn’t just me while I was offering try it yourself racquetball demos at the World Parkinson’s Congress in Montreal in 2013. Giving folks a chance to try out the sport, at least bounce a ball or two off the wall. This woman who had intense dyskinesia and was swinging and swaying wildly. I threw the ball off the wall and she connected repeatedly. It was amazing. How did she shift from the statistic PD boogie to connect accurately with that orb randomly ricocheting thru space.

it just seems like there’s a lot more power in the brain than we realize. Scientists readily concede that there are only two frontiers/mysteries left to explore, space beyond sight and the space betwee our ears that we call the brain. Wouldn’t it be great to harness the true potential of the mind for more than a moment. Do they can make and app for that? Not the popular app CALM Everyone is raving about but maybe one called react and engage!