Adaptive Accessories, Coping Part I, The Arm Warmer

In its rigidity, my left forearm is always cold. Since well before my diagnosis of PD, I have found ways to keep it warm…

At first it was a wrapped scarf

Virage Beach, Dakar, Sénégal Circa 2007

Then I bought leg warmers 

My Bday BBQ, Vancouver August 17th 2009

Test drive, Vancouver Summer 2010

Which had surprisingly come back in fashion and where thus available at The Bay

More recently I have opted for a more discrete black cut-off sleeve or cropped fleece mitten from Mountain Equipment

November 7th 2011 (Tabaski -
Aïd al Kebir, the Feast of Sacrifice -
Saint-Louis du Sénégal)

Only returning to the original scarf style for special occasions – such as this veil-like Ralph Lauren for our Black and White Wedding.

Black and White Wedding, our backyard, Vancouver

With Abdoukhadre, May 23 2010

THREE: High school and Hormones and starting all over again, again.

Sports Day, with my younger sister Jane

I was lucky in my childhood: loving adoptive parents, freedom kids don’t have today, creative and athletic activities galore and summers on Gambier and Vancouver islands. Camping; canoeing; hiding-seeking in urban corn fields; meteorite watching from our sleeping bags on the boathouse roof; fleeing bats down narrow night roads channelled by 150 foot trees; making our own radio shows; and calling our mothers the Beasties. It was a time, like for lots of lucky kids, of joy and self-discovery. It became me.

Then came high school and hormones and that self got lost, led astray by the bodily changes of puberty (not to mention the Peer Pressure).

My 20s and 30s were spent rediscovering and recreating the fertile terrain for the creation of an adult version of that kid self. Philosophy studies at UBC; bike trips (Vancouver to Montréal, solo up to northern BC, Europe, Israel, Turkey, Japan).

South of France 1986

In Istanbul, with a McDonald’s garbage 
bag full of Turkish carpets 1987

After 4 months working on Kibbutz Kinneret and a Negev Desert cycle with a rescued dog on the back of my dear friend Nikki’s bike, working as a Chambermaid in an Israeli hotel, where the work sucked but was made up for by the experience of living with a small group of African clandestine workers who’d had the good fortune to migrate 25 years ago before the desert and ocean crossings became today’s futile, often deadly desperation.

In the Negev Desert Israel with 
Nikki and Mags the dog 1987

Then going to art school (Concordia, Montréal) and becoming an artist (photography, found object and poetry installations).

Diana’s Quiver (1993)

Escarpolette and

Sword and Shield (part of FOLD) 1995

Hill Mantra – rue de la montagne (1993)

To Fall (1994)

Baptême (a book work, Galérie La Centrale, 1996)

And working in the Montréal art scene, most interestingly at Studio XX where in 1997 I created the international web art festival Maid in Cyberspace (now updated to Festival HTMlles).

An invitation from ISEA to be a monitor in West Africa’s 1st web art project in Dakar led me to Sénégal and all sorts of good and bad things: my husband and my cat being of the former. So too my art exhibition Toubaab! at the Canadian Embassy.  Toubaab! explored my integration as a visible minority immigrant into Senegalese life.

Toubaab! (2005) Entrance Hall, Canadian Embassy Dakar

My senegalo-canadian  flag

1 in a series of photos in Toubaab! (photos: Djibril Sy) 

One of the poems and proverb signs in the exhibition

The exhibition was preceded by freelance web design in Dakar and followed by a wonderfully challenging and rewarding job as a professor of web design and Department Head at a computer college in Dakar.

There was phosphorescence in my childhood and I had found it again.

And then my arm started to twitch. After sustaining 12 hour days of computer work suddenly I could barely type. Three years later I was diagnosed with Parkinson’s Disease.

As the shock, anger, denial, anger fade, the bodily changes of PD mean starting all over again, again. 

A new me. 

Which equals the old me minus just about everything I ever loved to do. 

TWO: Not

It didn’t work – in fact SINEMET made my symptoms worse and gave me some I hadn’t had before: Freezing, a late stage PD symptom, in which, well, you freeze in place for a short time then carry on, and Paranoia. Such paradoxical side effects of low doses are considered normal. Apparently.

Later on I met a woman in Vancouver International Airport who told me that the meds I take now (2012 - Prolopa, my 4th attempt at symptom management) worked so well for her ex-husband that he upped his dose and became schizophrenic.

PD: a loss of the neurotransmitter dopamine; Schizophrenia an excess of it. The Dopamine Spectrum.

(I learned later that medically it doesn’t actually work that way. A pre-disposition to Psychosis can collaborate with excess dopamine drugs to bring on Psychosis as a rare side effect.)

It took a year and a half before the Big Specialist was sure. It took me a year or so longer. It was a PET Scan that finally convinced my visual artist’s mind in vivid colour of the loss of Dopamine.

Positron Emission Tomography (PET)

PET imaging is used in researching biochemical changes associated with brain disorders such as Parkinson’s disease and psychiatric disorders, and in diagnosing a range of diseases, including cancer, neurological disorders, and cardiac disease. The PET procedure involves administering to the patient a radioactive tracer that concentrates in specific areas of the body (e.g. in tumours), allowing the PET machine to detect the radiation and construct an image of the chemical processes in that area. A PET scan provides an image of the functional details (e.g. metabolic processes) of the body, whereas an X-ray or a CT scan shows only structural details (e.g. bone and cartilage). -- http://www.triumf.info/public/tech_transfer/pet.php

The image is a mirror image: the right side of the image is really the left side of the brain and the left side of the image is the right side of the brain. The scan I completed is called a Dihydrotetrabenazine PET Scan.  Dihydrotetrabenazine scans provide information about dopamine storage in the nerve cells.  The red and more gold are on the right side of the image. The lack of these colours in a scan indicates the reduction in dopamine (symptoms thus on my left side).

I don’t understand the science or the technology but I could see that something was clearly wrong where Medicine was telling me it was. Having the symptoms (muscle rigidity, tremor, dystonia) was not enough. I had other explanations for that...

ONE: Me

Rushing through Paris Charles de Gaulle airport, connecting from Dakar to Montréal, my husband AK managing the carry-ons, my Senegalese cat “Taxi” snug in her airplane cage -

on my lap -

I came face-to-face with the New Me in the mirror of the Terminal 2E elevator,

pushed, expertly and with charming humour by the Manchester born Air France attendant,

in a wheelchair.

First time in my life.

Well except for the giddy ride through Dakar’s much more condensed airport for the previous night’s flight to Paris. Until then I’d always struggled along, dragging my own carry-on and my “bad” left foot, determined (as always) to do it myself.

The cat did not look unhappy in the mirror.

But I realized that if I want to migrate between Senegal (winter) and Canada (summer) every year I’d have to make some concessions to my Parkinson's disease.

It's all about concessions, pacing oneself, prioritizing, calling myself gimpy if I want to, not letting others’ ideas of what I should do or be interfere with my way of becoming the new me.

Parkinson's disease. It’s a bitch.

And when you have it, it has you.

(a swiftly emoted cliché intruding upon my memory’s recounting)

I remember years ago reading a book about West Coast native people called Daughters of Copperwoman. One of the lessons it taught me was that looking in the face of Fear, not blinking or turning away, gave its power to you. Many traditions teach this. An old boyfriend of mine once gave me a Tibetan silver bracelet with face to face lapis lazuli dragonheads. Same story.

Acceptance is important. A positive attitude is helpful. But taking on the force of that which wants to destroy you - this degenerative neurological disease characterized by increasing physical and sometimes mental dysfunction (and drooling for heaven’s sake!) – and making it work for you is better IMO.

One reason I want to blog catsaway with Parkinson's is that the perky messages I read from other people with early-onset Parkinson's enraged me with their pastel coloured version of the destruction being wrought on our lives.

To each his own, of course.

But I could no more relate to them than I could to the elderly people I’d joined in treatment at the Pacific Parkinson's Research Centre at UBC in Vancouver.

Breeding ground for denial - especially when the Big Specialist humbly explained that it never happened to him, but he wasn't sure if I had PD or not. So he wanted me to start taking the PD medication SINEMET to see if it would help (in which case it would mean I did have PD – if it didn’t help it didn’t mean I didn’t have it). Kind of like the medieval: if the witch drowns she is innocent.