Where there’s a pill, there’s a way.

Steve sorting pills, necessary for the long days ahead.
I write this note while sitting beside Jim Redmond  on a flight bound for Victoria BC.  So much has happened over the last few days that I really am playing catch up.
First, on the weekend I participated in three days of meetings and gatherings with people from Parkinson’s Canada (PC). I am on the Patient Advisory Committee (PAC) for PC, a role that I have grown to enjoy and highly value. We received interesting updates on research and wellness programs (including a shocker from Dr Lang that there will be a PD bio-marker within 1 year), and to meet our team in person. I really care about the plight and future of people living with PD (PLWPD), and it is rewarding to spend time with like-minded people. I felt an immediate rapport with each of them and it stirs my imagination to think of ways that meaningful programs and services can be delivered. This was a chance to connect, listen and raise tough questions, and that’s what I did. I came away from this experience with a better understanding of circumstances and of the optimal role for PC.
One PAC member is my newest old friend, Dan Steele, from the bucolic Province of PEI. Aside from having an eternally cool name, Dan stands out for having something quite rare: purpose. Dan is a ferocious advocate for  PLWPD. He is focused on things that will ease burdens and improve lives. Dan has an army of supporters – both on the island and off – who clearly respond well to his no nonsense approach. Simply put, Dan gets it done. 
I had the chance to host Dan for a few days post-conference, and I got to see what makes him tick. Dan’s PD-weathered posture is symbolic of his life – bent, but not broken. We did a few bike rides during his visit, one of which was 60km on busy Toronto streets, and I got to witness him masterfully make his way through traffic, negotiate tight curves and tame crowded paths, yet on the same day, I saw him freeze to the point of complete immobility – legs stationary, hands curled, voice softened – utterly frozen.  It would crush the spirit of most people to have their core human abilities shorn from them multiple times a day, but Dan does not break. He deals with the circumstances immediately in front of him and carries on. He has to; people need him. 
If there is a Dan in your life offer to help them. Any help really, big or small.  They will likely accept your offer – that is their reflex- and you may find yourself taking  the first few steps on a path to something soul satisfying.
The next day brought a new adventure. Thanks to the peerless efforts of Dr. Millar from Guelph University, I had the opportunity to participate in a full day of tests, measurements and observations to establish my baseline health and PD status. Dr Millar is running a study to analyze the relationship between exercise and PD progression.  Some early observations are hopeful – symptom presentation and severity may be significantly improved through intense exercise. I already knew this; I see it when one of our Rigid Riders really focuses.
Thanks to Muhammad in Dr Miller’s lab who ushered me through a battery of tests conducted by a multitude of specialist teams.  I was able to detail with stunning accuracy so many aspects of my state of physical fitness and PD progression.  This will be a case study, and I will return to the lab after the x-Canada ride to compare results. Wouldn’t it be interesting if I could capture some evidence of symptom abatement through exercise. These researchers were so thorough, enthusiastic and professional in their work, a reminder of how important these people are in the search for a cure, and why research funding is so necessary.
Some highlights of the day: when doing a VO2 Max test to determine how efficiently my body utilizes oxygen, I was initially crestfallen by my result. My maximum power was below my typical level of ability, and well below the ‘top’ numbers that I caught sight of on a chalk board. I was resigned to disappointment with my result, but discovered that, in fact, I had the third highest score that this researcher had encountered. That felt good. Similarly, a test to determine the exhaustion and recovery of my leg muscles had to be concluded after a comically high number of repetitions failed to yield a decline in muscular strength.  My bruised shin and aching hip flexor are proud memories of a gruelling and satisfying day.
Finally, the night before our flight I attended an evening event with a group called 100 Men Who Care. We all meet at a bar to hear  about local charities that serve in East Toronto., and then to pick one to receive support. Though not technically eligible, the organizers urged me to put forward Passion For Parkinson’s, our lead charity for our ride. P4P was ultimately chosen as the winner and, if tradition holds, each of the 25 or so members in attendance can be counted on to make a charitable donation.
What a great topper to an eventful week.  
We are just flying over the Rockies now, and I see plenty of snow. I wonder if we will encounter any on our ride. If so, expect a snowball fight a video blog.

4 Responses

  1. Thanks for the shout out in your blog re: 100GuysWhoCare. It was a great night.

    We’re rooting for you and will be following along via the website.

    All the best,
    Matt and Rob and the all the other Guys Who Care.

  2. I wonder if it would be “kosher” to approach a different “100 Men Who Care” group for the same kind of support. We have our own “100 Men Who Care” group in the Quinte community, too, and there is a good chance that someone in that group might be familiar with the vibe of P4PinPEC events in years past. If you find out that each group is independent and you would like to follow up, please get in touch.

  3. Let me first say ‘Aww, shucks’ to your glowing comments about our time together, Steven. You are the real deal, my friend. I’m so glad to hear about the funding opportunity through 100GuysWhoCare. We have 2 similar groups on PEI that I plan to approach on behalf of PLWP and seniors in general.

    I thought that the weekend meetings and exercises leading up to the AGM were quite eye opening. These included meeting of the new Parkinson’s Advisory Council (PAC) for Parkinson Canada (PC) which was only possibly because of its creation by Karen Lee, CEO of PC. Even our photographer, who I met only on the last day, turned out to be one of the co-founders of the Pedaling for Parkinson’s events, Peter Istvan. The young energetic staff who are all working to help us navigate life with PD I will now consider as part of my extended Parkinson’s family.

    Steven, I agree that Dr. Lang’s comments were indeed great news, I interpreted what he said a little differently than way that you described. As I understood it, he said that we would finally have a definitive test for people with PD which would not include scans or any kind of surgical interventions. Simply put, It would be testing of a urine sample that if manipulated in a particular way and afterwards shows characteristics typical of PD sufferers, that becomes the new definitive diagnostic tool. That is great news to anyone who has be wondering if they have PD or not and certainly a good news story to those who are often misdiagnosed because of the current clinical diagnosis standard which should really only be made by a movement disorder specialist or neurologist specializing in PD.

    Dr. Lang further indicated that he expects that it will be some years afterwards until we can see new disease modifying drugs to address the different PD groupings of symptoms.

    Takeaway: There isn’t anything simple when it comes to PD.

    PS. This short blog post took me literally 2 hrs or more type thanks to my Parkie fingers.

Leave a Reply

Your email address will not be published. Required fields are marked *

Why We Are Doing it

You have probably heard of Parkinson’s Disease. You may even know people who suffer from it.  Get used to it, as Parkinson’s Disease is the world’s fastest growing neurological condition, set to double in number by 2040.

Parkinson’s Disease occurs when the brain’s dopamine-producing cells die prematurely. Dopamine is a neurotransmitter necessary for many functions of the brain and body, including muscular control, and its loss affects all forms of movement and balance, as well as non-motor functions such as memory, concentration and motivation.  Think of dopamine as the electricity in an electric car: without it, the lights dim and the wheels stop spinning.

There is currently no cure, no bio-markers to aid detection, and little is known about how it is triggered, except that Canadians are disproportionately afflicted

Most people living with Parkinson’s reduce or even discontinue regular intensive physical activity after their Parkinson’s diagnosis.  Why?  Their actual skills and abilities do not suddenly evaporate on the date of their diagnosis, though their mental fortitude often does.  As a result, many abandon the very restorative health practices, such as regular exercise, when they are needed the most.  For people with Parkinson’s, intensive exercise can boost energy, sharpen the mind, elevate spirits and keep the body mobile.  Studies indicate that intense exercise can help train the Parkinson’s afflicted brain to use dopamine more efficiently and be able to do more with less.

Let’s use the dopamine we have to build the lives we want.

What are We Doing

Canada is a big country.  It is home to over 100,000 people living with Parkinson’s disease, 9 in 10 of which suffer in silence, isolation, or without the support of a knowledgeable organization or community.  Starting in June 2022, we aim to cross our big country by bicycle to meet as many of these people as possible to personally deliver this message: get moving to stay moving.  

We start In Victoria, British Columbia and ride east through every Canadian province, and hundreds of cities and towns along the way.  Our route is approximately 8,000 km, and we expect to average 125 km a day, six days a week for approximately three months.  Our Spinning Wheels Tour team will include two riders with Parkinson’s Disease, as well as two ride-along supporters to keep things moving.  Along the way, we will be meeting with people whose lives are touched by Parkinson’s, and encourage them to get moving with us, get engaged in support communities, and to set up their own group athletics.

We are not athletes, just people with the resolve to do what it takes to live well with this disease, and to encourage others..  

Along the way, we hope to hear these words, “If they can do it, I can too.”