April 11, 2019 7:00 am
Updated: April 12, 2019 12:01 am

When Life Gives You Parkinson’s podcast: World Parkinson’s Day

There are more than 40 non-motor symptoms associated with Parkinson’s.

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In this special episode of When Life Gives You Parkinson’s, the Parkinson’s community from around the world comes together to share what they believe you should know about this disease. I also interview Matt Eagles, who was diagnosed with Parkinson’s when he was eight years old. He just helped to create and launch a new initiative called Parky Life.

In 2017, I was diagnosed with Parkinson’s disease (PD) at 45. I didn’t know what it was. I didn’t know if it would kill me. I didn’t know if I was going to have to stop working or how it might impact my marriage, fatherhood or friendships. I, like most people diagnosed, knew that Michael J. Fox and Muhammad Ali both had Parkinson’s but other than that — nothing.

READ MORE: When Life Gives You Parkinson’s: Becoming ‘Disease Guy,’ and other things you can’t put on your LinkedIn

That’s why World Parkinson’s Awareness month in April and World Parkinson’s Day on April 11 are so important.

Parkinson’s is a chronic, progressive, degenerative neurological disease. It is estimated that 10 million people in the world have it. In Canada, one in every 500 people are living with the disease. Each year, another 6,600 people across the country are diagnosed.

I now know Parkinson’s will not kill me. With proper medication and exercise, I can still work — for now. My relationship with my wife, my son and friends is stronger than before. I also know each day is different, many of my symptoms are hidden from plain sight, no one knows exactly what causes it and there is no cure.

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It’s been just 18 months since my diagnosis, and I continue to be amazed by the gifts Parkinson’s has given me. Don’t get me wrong, I hate this disease. I don’t want it. I wouldn’t choose it. But it’s mine and it’s not going anywhere so I figure I might as well find a way to work with it and make a difference with my life.

READ MORE: ‘Not making the connection’ — What it’s like for Parkinson’s patients with frozen gait

When I wake up, usually in the middle of the night, I have a choice to make. How am I choosing to approach the day? I could be a grouch, complaining to all who will listen that my feet are numb, my toes ache, my arms and legs are rigid, there is a tremor in my hand, and I’m bruised from banging into doorways. Most days, though, I choose to be grateful and happy. It’s more fun to celebrate the good in life.

Parkinson’s has offered me a new perspective. My issues, physical or otherwise, including trivial matters like pet peeves, used to consume hours of my energy and attention. Now, who has time to worry about things you can’t control?

I breathe. I move. I do what I can each day. Some days are wildly productive. Other days not so much. No matter — tomorrow is another day.

WATCH: One Parkinson’s patient to another: ways to cope with the condition

Acknowledging the things in life for which I am grateful quickly helps to squash the sense of loneliness that the shadow of Parkinson’s casts. While the disease can be isolating, I find the more I share my story and engage with the PD community, the more my support system grows and the more I realize I don’t have to face this alone. It also highlighted for me that asking friends and family for help is a sign of strength, not weakness.

It’s also important to note that not everyone diagnosed gets a tremor. Most of us have sleep disruptions, depression or anxiety, aches, pains and bladder issues. One of the initial signs of PD is losing your sense of smell. In fact, there are more than 40 non-motor symptoms associated with Parkinson’s. Recognizing PD is more than a twitch, a tremor or a stuttered walk is a good reminder to all of us that many people among us suffer in silence with handicaps that cannot be seen.

Follow me, Larry Gifford:

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow co-host and producer Niki Reitmayer:

Twitter: @Niki_Reitmayer

Thank you to Matt Eagles of Parky Life https://parkylife.com/ and everyone who contributed to this episode.

For more info on our partner, Parkinson Canada, head to http://www.parkinson.ca/.

The toll-free hotline is 1-800-565-3000.

Or follow them on Twitter:

Parkinson Canada: @ParkinsonCanada

Parkinson Society B.C.: @ParkinsonsBC

If you have a comment or question about the podcast, you can email us at parkinsonspod@curiouscast.ca.

When Life Gives You Parkinson’s was selected as one of Apple’s best podcasts of 2018

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  • Click the name of an episode from the list below to listen.

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