Sunshine Strikes a Chord — A #Widow of Opportunity

piano sunshineWoke up alone in bed. Again. Shuffled to the kitchen. Greeted “good morning” by my   radiant piano. Tuned in to Bergen. He loved music and how it connects communities. The way Keys to the Streets does — a project that aims to transform social isolation into community belonging by putting pianos in public spaces, for anyone to play. #keys2streets

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Hindsight, Findsight — A #Widow of Opportunity

Bergen drivers licence 1965Found my late husband’s driver’s licence from 1965. Bergen was 22. A young man destined to travel the world. Had we met back then — when I was just one year old — I could have been his carry-on luggage.

Posted in breast cancer, death, Early Onset Parkinson’s Disease, humor, Parkinson's disease, relationships, travel, Young Onset Parkinson’s Disease | Tagged , , , , | Leave a comment

Remembering Bergen Amren

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April 21, 1943 – January 16, 2016
Bergen Amren passed away peacefully on January 16th. Born in Prince Rupert, he grew up in the bustling town of Bear Creek, Yukon, he was moved to Vancouver at the age of seven and sprinted his way through the halls of Killarney High School, East Van, then UBC for a BA in Psychology and Sociology and an MA in Sociology . Bergen’s careers were many, including stints with the Ombudspersons Office, ICBC and the office of the Attorney General. A late bloomer, Bergen met Robyn, the love of his life, and became a father to Naomi when he was 50. A carpenter, outdoorsman, musician, dancer, cook, world traveller and guy with a dry sense of humor, Bergen entertained his family and friends for years with a menu of never-ending possibilities. As a volunteer, he brought his skills as a mediator, facilitator, mentor and someone with a keen sense of social justice to the communities and people he loved. Remembered for his joie de vivre, warmth, humour, intelligence, compassion, generosity and endless curiosity.

In lieu of flowers, donations can be made to campOUT at (toll-free 1-877-717-4483) or to Vancouver Association of Restorative Justice (click on Ways you can help!) & by cheque mailed to: Vancouver Association for Restorative Justice 308-2410 Cornwall Avenue Vancouver, B.C. V6K 1B8 or to British Columbia Council for International Cooperation (click here) by paypal & by cheque mailed to: 550-425 Carrall Street, Vancouver, BC, V6B 6E3. A Celebration of Bergen’s life will take place soon. Details tba.

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Somewhere In The Rainbow: My Husband, Bergen Amren

Bergen Amren
April 21, 1943 – January  16, 2016

My love, my muse, my best friend
R.I.P.

Posted in family, health, relationships, Young Onset Parkinson’s Disease | Tagged , , , | 7 Comments

Confession from an Artist with Parkinson’s Disease

Canvas Amandine Animation1It’s been – and still is – a long, hot summer. Miraculously, I’ve managed not to melt. More incredible, I worked up the courage to buy some real art supplies. Stuff I intentionally stopped using when diagnosed with Parkinson’s. Why? By avoiding exposure to potential neurotoxins in paint, I hoped to protect what was left of my neurodegenerating brain cells. Soon after this boycott, I discovered the magical realm of digital art. But recently I’d been craving the real deal. The physical smearing of paint upon canvas. Tactile textures.  Accidental drips. So after an eight year hiatus, I have resumed painting with acrylics and I am overjoyed. I know this might not be good for my brain. But then again, neither is Parkinson’s disease.

 

 

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Guess How I Broke My Toe?

BrokenToe Animation2 1. A stranger accidentally stepped on it while I was at Rain or Shine — my favourite ice cream store.
2. I got carried away while reading Toes In My Nose, a poem by Sheree Fitch.
3. My toe snagged on the rug while I was shuffling very quickly to the washroom.

Posted in Early Onset Parkinson’s Disease, Parkinson's disease, poetry, Young Onset Parkinson’s Disease | Tagged , , , , | 4 Comments

What’s It Like Having Parkinson’s? Try Bruce Ballard’s Simulation Exercises

scribble blue Animation3Parkie Bruce Ballard — fellow WPC Blogger Partner — is shaking up the internet with his recent post: “What’s It Like Having Parkinson’s?.”  If you’ve ever wondered what PD feels like, try these simulation exercises and encourage your friends to join the thousands of other curious people visiting his blog and the World Parkinson Congress FaceBook page.

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World Parkinson Congress 2016 Launches “Portland Countdown” #WPCPodcast Today — Tuesday June 2, 2015

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I’m a firm believer that knowledge is power. That’s why I’m so excited to tell you about Portland Countdown.  This new series of free educational podcasts — hosted by two highly experienced journalists (who are also living with Parkinson’s) — kicks off today. Together, Jon Palfreman and Dave Iverson take listeners on a journey into the realm of Parkinson’s disease: the history, research and treatment, family dynamics and much more. Accompanied by neuroscientists, neurologists, people with Parkinson’s (PwP), caregivers, and carepartners, these engaging conversations are the perfect primer for the  4th World Parkinson Congress taking place in Portland, Oregon September 20 – 23, 2016. Click here to listen to or download #WPCPodcast episode one.

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Parky the Raccoon Helps Travelers Attend World Parkinson Congress 2016

Perky Animation1Parky made its debut in Montreal at the World Parkinson Congress 2013. Selling these stuffed toy raccoons was a “last minute” fundraising idea, leaving no time to create and advertise a Parky fundraising campaign. Much to everyone’s surprise and delight, Parky was a hit! 750 raccoons were sold; $7,500 was raised for Travel Grants to the upcoming World Parkinson Congress 2016 taking place in Portland, Oregon, September 20 – 23, 2016. With just 495 days to go until opening day — Parky is back and with your generous support, together you’ll be paying it forward to Travel Grants for World Parkinson Congress 2019. So click here to buy your Parky

Posted in Early Onset Parkinson’s Disease, Parkinson's disease, research, shopping, travel, Young Onset Parkinson’s Disease | Tagged , , , , , | 1 Comment

Today’s Big Pharma Forecast For Robyn Michele Levy’s Brain

Today is a brave new day in your neurodegenerative life!  Your brain chemistry — probably your dopamine levels — are out of whack and causing havoc: On/Off symptoms; body trembling; sleep deprivation. Begin neurologist’s new (and improved?) medication regime. Keep track of side-effects. Resist urge to eat coconut chocolate chunk ice cream for breakfast.

Posted in Early Onset Parkinson’s Disease, humor, Mental Health, Parkinson's disease, Young Onset Parkinson’s Disease | Tagged , , , , , , | 2 Comments