It’s hard to admit it when you need help. It’s even harder to make the phone call, ask questions, commit to showing up, walk into a room full of strangers and share things that still remain secret to the closest people in your life.
I’d never been in a support group before I was diagnosed with Parkinson’s. I didn’t know what to expect. I wondered how my Parkinson’s would measure up and if I was too young, too healthy, or too whatever to be accepted by those who bravely showed up for these meetings long before I did. Maybe I could tough it out. Maybe I could deal with this on my own.
Maybe I was being ridiculous.
Ten million of us have Parkinson’s. We’re all dealing with this interesting, unpredictable, degenerative, life-altering, sucky disease. Those of us with PD know the struggles, the questions, the ups and downs, and each us of deserve support.
Turns out great things happen when five or 10 of us cram into a conference room each month. I’ve met new friends: John, Linda, Lee, AJ, Richard and Tony. Some are newly diagnosed, others have been living with PD for many years. Each gathering we laugh, share stories, ask questions of each other, offer unsolicited advice, and nod knowingly as one-by-one we discuss medication, symptoms, and struggles.
We don’t always agree on the best way to approach the disease. Some have found peace with it and others would like to tear it to pieces. Some befriend it, others bemoan it. Some accept it, others reject it. Some are grateful for the gifts it’s given them, some shower it with profanity. Some offer it a name like Parky, while others can barely utter the “P” word to begin with. It’s okay. People in your support group meet you wherever you are. You might be depressed, inspired, angry, confused, exhausted, or content. It doesn’t matter. I… they… we will support you and you deserve the support.
In this episode of When Life Gives You Parkinson’s, I take you inside my support group to demystify the experience and give you a first-hand perspective of what it’s like. Co-host Niki Reitmayer talks to Kelly Williams, a clinical resource nurse at the Movement Disorder Clinic in Winnipeg, about support options for people who live in rural areas many hours from traditional support services. For the first time since my diagnosis, my wife Rebecca discloses she is now ready to explore support group options for care partners.
Follow me, Larry Gifford
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
Follow co-host and Producer Niki Reitmeyer
Twitter: @Niki_Reitmayer
Thank you to Caroline Wiggins at the Parkinson Society of BC, Kelly Williams at the Movement Disorder Clinic in Winnipeg, my support group Lee, Richard, John, AJ, Linda, and Tony, and my wife Rebecca Gifford.
For more info on our partner Parkinson Canada head to http://www.parkinson.ca/
The toll-free hotline mentioned in this episode is 1-800-565-3000
Or follow them on Twitter
Parkinson Canada @ParkinsonCanada
Parkinson Society BC @ParkinsonsBC
Credits
Dila Velazquez – Story producer
Rob Johnston – Senior audio producer
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