Day 3 Parksville Arrival

and what a ride it was!

Shakin' The Rock for Parkinson's

I said I was Parky-brained. In my first day-3 post I didn’t say anything about my arrival at the Travelodge where we’re staying. When I finally arrived, almost out of juice, I was met by a line of  cheerleaders – some from our travelling road show and a large cohort from the local Parksville/Qualicum support group. Doug Pickard, with his endless energy, had recruited and organized a well oiled welcoming machine. But wait, there’s more. There was the presentation of a cheque for more than $1000 from a recent garage sale and a potluck meal that couldn’t be beat.

If you’re going to get Parkinson’s, you could do much worse than to be living in Parksville/Qualicum.

Here are some pictures that Doug sent me.

Welcoming Committee Welcoming committee at the Travelodge entrance.

Definitely a sight for sore eyes!

Alf and Brett Alf and Brett Arriving.

Alf arriving with Grandson — no, wait — It’s Brett…

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Pre-Ride Parky Jitters

I am joining with the jitters for the last 250km . Ride safe Kevin you brave Parky! See you Wednesday

Shakin' The Rock for Parkinson's

The count down widget on the web-site now shows less than 24 hours until lift off… drive off? … roll off? … whatever. We leave in less than a day on a 500 km trek down Vancouver Island. It seems a long way to go sitting astride 15 kg or so of bicycle. That’s about 35 kliks per kilo of bike. The Apollo 11 team did about a million kilometres in something that started at 300,000 kg so they only got 3 km/kg. OK, if you only include the 6000 kg that came back to Earth it’s more like 200 km/kg. It was a lousy comparison anyways but I had to get back at the people who measure everything in units of olympic-swimming-pools.

Anyways, I wanted to talk about Parky jitters. Now that may sound redundant. Wouldn’t a “parky without jitters” be an oxymoron?  Ha, ha!  Not all parkies have…

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Women Support Groups Attending WPC

Parkinson's Women

If you’re thinking of starting your own women’s support group, you may want to chat with some of the women’s group representatives who will attend The World Parkinson Congress (WPC) on September 20-23. Each one of them has experience in community-building for women who have Parkinson’s disease. They plan to meet at WPC at a time and location to be announced, and they would be delighted to share their experiences about building women’s support groups with WPC attendees.

Some representatives planning to attend WPC include:

Southern California
Representing the Los Angeles area, Inspired Women with Parkinson’s in Los Angeles is a group organized by Sharon Krischer. Krischer started a blog, Twitchy Woman: My Adventures with Parkinson’s Disease to encourage the exchange of ideas and solutions with others living with Parkinson’s. The support group was a natural next step after Sharon attended the Women & Parkinson’s Initiativeconference sponsored by the Parkinson’s Disease Foundation (PDF). The group…

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In a few weeks it will be my official 3rd anniversary with a diagnosis of idiopathic Parkinson’s disease. It wasn’t a surprise to me and as with most of us I initially felt more relief than anything as I had been told I had Parkinsonism symptoms three years prior to my official diagnosis.

What has transpired in the three years? Well being in the healthcare profession, a physiotherapist for 29 years I researched PD and think I am very close to getting my PHD!

I am stuck at present. I am an advocate for my local PD family but I have not gone any further. I have attended workshops with the MDS on the latest outcome measures in the treatment of PD. I am a PWR! /Exercise 4Brain Change clinician and have started an exercise class for my local PD family. I have networked and met many PWP.  We are all…

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

Robyn Michele Levy

launch Animation1

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

Robyn Michele Levy

Perky Animation1Parky made its debut in Montreal at the World Parkinson Congress 2013. Selling theses stuffed toy raccoons was a “last minute” fundraising idea, leaving no time to create and advertise a Parkyfundraising 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

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We Have the Parkinson’s Movement , What next? We need our PD Community to Unite Now!


The agreement reached between the Cure Parkinson’s Trust and the Van Andel Research Institute in Grand Rapids last week regarding Linked Clinical trials for PWP is a major breakthrough on the way to better treatments and ultimately a cure for those living with Parkinson’s disease around the world. The movement has begun for PWP and it is our turn NOW!

How can the Parkinson’s community help move this forward? We need to act fast. We need patient advocates across the world to make it happen. Who is going to join me? We will be starting in North America. I will be looking after Canada.

Simply put the clinical trial procedures are going to be patient driven. No decisions without asking us first. We will then go to the neuroscientists and present ourselves to them. This will be very different from the present method of neuroscientists developing a hypothesis , applying for grants and finally looking for PWP to participate in the study.

The process on how this can be accomplished will need advocates’ input. This means we, the global Parkinson’s community have to unify. We need more advocates to educate and decide which trials we will chose to participate in. Without clinical trials there will be no movement towards the cure. Parkinson’s Movement Canada’s vision is to gather PWP to become advocates from across Canada to be the experts for the clinical trials. Advocates will be our support people for PWP in Canada to contact regarding the trials, the plan for implementation and support throughout the entire process from start to finish. The advocates will be the go to people across Canada during the trials.Included in the process will be logistics of bringing us, the PWP into the study. Maybe we can bring the study to us instead of having to travel great distances to participate. Also the plan is to have the cost of the trials for PWP included in the application for the grants. Some of the Linked trials already have funding. Under no circumstances will PWP not be included due to costs incurred due to distance and time away from home. You told us in the survey prior to the meeting in Grand Rapids what the barriers have been and we will eliminate them.

How can we do this in Canada? We need to work together to come up with a plan. We need to do this right now! There are so many of us living with Parkinson’s at present and more and more are being diagnosed across the country daily.

Canada’s advocates role will include contacting PWP in their area and educating everyone as to why participation is so important to outcomes. Advocates will also provide support throughout the process and encourage participation.
There will be a training session for those who sign up to be Canadian research advocates so you will never be on your own.

We as people living with PD don’t have time to waste .

Please email me at if you are interested in being a Canadian advocate. We are a big country spread out over a vast amount of miles. We need many to make sure everyone living in Canada can be part of this great challenge.

I know a lot of you already and am expecting your reply.

When we work together, together we will win!

Thank you

Jillian Carson


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