Young onset Parkinson’s: “How I look is not how I feel”

Interviews

Author: Caithlin NgPublished: 20 February 2020

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Tim Hague Parkinson's Vision 2020

In anticipation of Parkinson’s Vision 2020, a two-day conference for people living with young onset Parkinson’s, we profile some of the keynote speakers. First up is US motivational speaker and author Tim Hague Sr.


Hi Tim, can you share with us the challenges of living with young onset Parkinson’s?

One of the first challenges of young onset Parkinson’s is that it is so hard to describe. It is not your grandmother’s Parkinson’s, which is one of the biggest misconceptions people have – how I look is not how I feel.

I am often told “you look so good”, but constant symptoms like fatigue and tremors make me feel like a much older senior. On top of this, there are also responsibilities that I must fulfil as a husband, dad, speaker, and writer.

How do you tackle these challenges?

It all begins with a positive attitude. The first foundation for this is my faith. As a follower of Christ, I simply and wholly believe he’s got this. Secondly, my wife Sheryl. She knows me, gets me, and together we walk through life. Lastly, my friends, the Parkinson’s community, and the self-efficacy that comes with exercise.

When were you diagnosed with Parkinson’s?

I was 46-years-old when I was diagnosed, and it came as quite a shock. My adopted father had died with the disease and I had nursed many Parkinson’s patients, but I never imagined I would one day deal with it myself.

I feel incredibly blessed for having prior experience to navigate my own diagnosis, but on the other hand, it can be terrifying as I fully understand what my future may hold.

You have described Parkinson’s as a “good thing” for the opportunities it has given you. How do people respond when you say that?

Some are startled to say the least! Most understand my point, however, which is that Parkinson’s has opened so many doors for me, has given me the chance to advocate for marginalised and forgotten folk.

How did you get involved with Parkinson’s Vision 2020?

I was there from its conception at the World Parkinson’s Congress in Kyoto, Japan. A group came together afterwards to discuss the unique needs of the young onset community, and the idea to host a global conference focusing on them emerged. Its lead organisers got the initiative off the ground and invited me to be a keynote speaker.

Why is it so important?

Young onset Parkinson’s is vastly different from “your grandmother’s Parkinson’s”, so it requires a radically new approach from what has been traditionally offered. Wellness is key too, so that we can face our many decades with Parkinson’s and remain strong in our search for a cure.

What do you hope attendees take away from it?

Hope – that they can have a long, healthy and meaningful life.

What are you most looking forward to at Parkinson’s Vision 2020?

As always, the people. This is such an incredible group of warriors who I look forward to hanging out with, learning from, and being encouraged by on my journey with Parkinson’s.

Need to know: Tim Hague grew up in the United States and has lived in Canada for the past 30 years. He is a retired nurse and is currently the executive director of U-Turn Parkinson’s, a wellness centre he founded in 2016. In his spare time, he is a Parkinson’s advocate and motivational speaker. He published his first book, Perseverance, through Penguin Random House Canada in 2018. Find out more at www.timsr.ca.

For more information on young onset Parkinson’s please visit the EPDA website.


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Parkinson’s and end-of-life: “I’m not afraid of dying”

Parkinson’s Portrayed: real stories reflected through art

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