On this episode of When Life Gives You Parkinson’s, my wife and partner in Parkinson’s, Rebecca Gifford, and I explore the important role caretakers play in the lives of people with Parkinson’s.
We visit with people we met through season two to discuss the balance between being a spouse and a caregiver; we wrestle with what to call these important people and wonder why the medical and scientific communities do not listen to them more closely and tap them for real knowledge about living with Parkinson’s disease.
Through the discussions, it has become clear to me that our partners are amazing people who care for us and prepare, as best they can, to deal with all of our unpredictable PD symptoms. They also have the responsibility to run the household, which may also include caring for small children and pets. Attention to their own self-care, interests and careers is managed with whatever time is left over.
Usually very little — if any time — is ever left.
Sure, we’ll travel while we can and set off on new adventures as COVID-19, money, and time allows. Life doesn’t end with a diagnosis. It changes. It constantly changes.
As years roll on, these amazing people will bear witness to their partner’s silent suffering as Parkinson’s slowly traps the person they love inside a body that will no longer obey.
Each minute…
Each day…
Each year…
Parkinson’s tightens its grip.
In my case, the disease has already begun to restrict my ability to be present at times and to empathize. Slowly, this relentless, degenerative neurological brain disorder causes disorder in my brain. It steals my thoughts and my voice.
In time, I know Rebecca will be there to support, care, challenge me and others, and advocate on our behalf. A writer by trade, she will find clarity and might in putting pen to paper, invoking the compassion of Quan Yin and just the right words to strike like lightning and reverberate like thunder.
There are millions of people like my wife who have untapped knowledge and a lived experience with Parkinson’s that researchers and neurologists could leverage in making life better for people with Parkinson’s until that day when we find a way to end it.
We should all demand to hear what they have to say. Immediately.
We are all up against the clock.
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Follow me, Larry Gifford:
Twitter: @ParkinsonsPod
Facebook: Facebook.com/ParkinsonsPod
Instagram: @parkinsonspod
Thank you to:
Tim & Sheryl Hague Check out their holistic Parkinson’s center at “U-Turn Parkinson’s” and follow Tim on Twitter and Instagram @TimHagueSr
Deana Grinnell
Jimmy Choi – follow Jimmy on Twitter @JCThr33 and on Instagram @jcfoxninja
Gila Bronner – Director of Sex Therapy Services at Sheba Medical Center.
Ellen Bookman – Ellen is very active in her PD boxing community www.pdboxing.org. Follow Ellen on Twitter @luvlivin3
Joe & Sarah Possenti
and to my wife and partner in Parkinson’s Rebecca Gifford. Follow her on Twitter @RebeccaJGifford and on Instagram @loveandmud
Our presenting partner is Parkinson Canada.
Its toll-free hotline is 1-800-565-3000.
Follow Parkinson Canada on Twitter @ParkinsonCanada.
Find the new Parkinson Clinical Guideline at www.parkinsonclinicalguideline.ca.
Our content and promotional partners:
Parkinson’s IQ + You — A free series of Parkinson’s events from the Michael J. Fox Foundation
Spotlight YOPD — The only Parkinson’s organization dedicated to raising awareness for young onset Parkinson’s disease and funds for the Cure Parkinson’s Trust
WPC2022 — Save the date for the sixth World Parkinson Congress, which is scheduled for June 7-10, 2022 in Barcelona, Spain. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.
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