Living Well with Parkinson’s, Together: No Matter What

Thanks to the support of donors, volunteers and everyone who is part of the Parkinson Community, Parkinson Canada has been able to be a support system for over 55 years. As part of a changing world, we are evolving to better serve individuals and families with the same purpose: A better life today for Canadians living with Parkinson’s; a world without Parkinson’s tomorrow.

In 2020, we took the time to listen. From 2021 – 2023, we’ll be guided by a new strategic plan that reflects back on what we heard. Our “No Matter What” strategic plan celebrates and supports the resilience of Canadians with Parkinson’s.

You may be familiar with the “No Matter What” phrase and the meaning behind them from our SuperWalk.

The phrase encompasses the unwavering spirit and determination of the 100,000 people in Canada diagnosed with Parkinson’s. It represents a commitment to overcome obstacles and support Canadians living with Parkinson’s to live well today, while working together on the path to a cure.

Starting today, “No Matter What” will not just be part of our SuperWalk, it will also be our words to live by in everything we do. Three simple words will drive all our actions towards a better life today for Canadians living with Parkinson’s; a world without Parkinson’s tomorrow.

Hear from fellow Canadians about how they are committed, no matter what:

Each participant shared an open and authentic story that will become part of a video series chronicling “No Matter What” moments and perspectives from their lives.

Caitlin Nagy, a 38-year-old mother participated to share her diagnosis of Parkinson’s. “I have been hiding my diagnosis from friends, some family, clients and even co-workers… never really quite sure I was ready to share it with them, primarily because a lot of people don’t understand what it’s like to have PD,” she says. “Essentially, these videos will be me ‘coming out’ to everyone that I have Parkinson’s… Parkinson Canada gave me a platform to be able to express exactly what I wanted to say, and to feel brave enough to do it. The whole process was so uplifting, and very therapeutic.”

Beyond the merits of sharing their diagnosis, participants are eager to lend their voice to a message that showcases resilience and inspire people with PD to engage and to live well.

Larry Linton recently published a book on his experience with Parkinson’s but notes that appearing on stage was a different challenge. “Sitting on stage was lonely at first. It reminded me of the day I was diagnosed. Dark and alone,” he says. “Then I realized that some of my stories began to shine light on my life’s journey and it’s not all doom and gloom.” Larry hopes that, by sharing, his story will help others adjust to their diagnosis. “Despite the seriousness of my condition I am living a life that has proved to be more fulfilling, rewarding and meaningful after my diagnosis.

Our new 2021-23 Strategic Plan focuses on reaching and remaining relevant to everyone in Canada impacted by Parkinson’s to support them in living well.

In these unprecedented times, Parkinson Canada is committed to providing programs and services that are more accessible and offer choice along the Parkinson’s journey.

We are committed to raising the voice of people affected by Parkinson’s through advocacy efforts focused on improving care.

We are committed to collaborating and partnering to drive research innovation with the hope of finding new treatments and ultimately a cure.

No matter what.

To learn more about this project, its meaning and the detailed 2021-2023 Strategic Plan, visit Parkinson.ca.

5 thoughts on “Living Well with Parkinson’s, Together: No Matter What”

  1. This is a gorgeous and stirring video. So many nice accents help to tell a story of sadness, but then ultimately fortitude and resolve. Nicely done.

    Reply
  2. This captures all of the emotions associated with living with Parkinson’s. The loneliness of the diagnosis at the start – the shock, sadness and confusion at hearing the news. Then, the challenges and frustrations in dealing with the symptoms – both motor and non-motor. The misunderstanding and wrong assumptions of the disease from others. And then, the fortitude and inner strength to live with the disease and not against it and to get the support from family, friends and the wider community in doing so. And finally, the ongoing commitment and promise to keep researching for a cure. A life’s journey with Parkinson’s in a minute and a half! Great job.

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  3. Let’s have a voice in the restructing of LTC facilities, because unfortunately those are the facilities that a lot of PWP will go to eventually when their families can no longer give them the care they need.
    Do you know that in Ontario it can take years for a place to become available? In the meantime the care partner wears out and also has to be admitted, yes that does happen.
    Research is important, but it cannot be the be-all and end-all. Parkinson Canada should be beating down the doors of government to do something NOW, not in five years.

    Reply
  4. This is a comment for people with Parkinson’s Disease. If you have no choice and have to enter a nursing home, your family has to make sure, that you will get your PD medication on time. My husband did not get his medication on time and the result was
    Speech went, choking and many falls (26). . . . Death
    He died just two months after entering the nursing home
    Be aware of this. We had no idea that homes do whatever they like.
    Judith

    My husband had PD for almost twenty years. He never gave up. His favourite t-shirt had this print on it:
    I have Parkinson and I am trying to shake it

    Reply
    • Hi Judith,
      We are so sorry for your loss. Your husband’s story shows an all-too-common concern people living with Parkinson’s have in care settings. Donor support has allowed us to develop the ACT on Time Program to ensure healthcare workers better understand how to support people living with Parkinson’s. Getting medication on time forms the heart of the program. You can find more information here: https://www.parkinson.ca/resources/act-on-time/.

      Reply

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