My dad maintains an attitude of gratitude while living with Parkinson’s
There’s always a silver lining, even in the darkest of times
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Several years ago, I wrote a column that described the sense of presence that Parkinson’s disease brought to our lives after my dad’s diagnosis in 2013. After the whirlwind of the diagnosis and navigating the logistics of what it meant for my dad to have the condition, we began leaning into our new future. Eventually, moments of gratitude appeared.
While I wouldn’t wish the disease on anyone, in my column, I talked about the way in which the diagnosis made me more aware of the time I have with my dad, causing me to become more intentional with our interactions. I said that in some ways, I’m grateful that the disease afforded me mindfulness.
At the mention of this, a stranger commented on the piece, saying that there’s nothing to be grateful for when it comes to Parkinson’s.
I thought a lot about that comment. Was I out of touch when I wrote about gratitude? When a disease is all-consuming, is it possible for there to be moments of clarity in the midst of the chaos? Was I out of line by expressing what I thought was a silver lining in an otherwise horrific sequence of events?
I think there’s always a silver lining, even in the darkest of times, and I’d bet that Dad agrees.
Maybe that silver lining is a morning without muscle stiffness, or a day without tremors. Or maybe it’s the mindfulness that comes when you’re not sure how long you’ll have together. That’s the silver lining that I wrote about — the opportunity to choose how I engaged with my dad instead of waiting until it was too late.
Don’t get me wrong. On many occasions, I’ve asked Dad how he’s doing, and he responded, “I’d be better if I didn’t have Parkinson’s.” The tongue-in-cheek response always makes us laugh. But there’s a jagged edge to his joke, too. It’s a simple acknowledgment that life with Parkinson’s is unfair, difficult, and relentless.
Still, Dad’s general outlook on life practically glows. When I come home, his eyes twinkle while he listens to our family chats in the living room (although the disease has made him less likely to engage in conversation). My mom, who is my dad’s primary caregiver, regularly notes that Dad’s attitude of gratitude makes it easier for her to cook him breakfast and support him in the ways that she can.
The disease, though heartless and unforgiving, seems to have softened my dad rather than hardened him. And I’m really proud of that.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
Ruth Gomez
My husband and I walk 1.7 miles daily. The way out is uphill on a highway that curves and tilts providing aerobic and balance training. That plus resistive and stretching home exercises seems to have slowed my disease progression greatly. I was diagnosed in 2013 and am on Sinemet at the same dosage now as in 2013. I am a retired Physical Therapist, 84 years old. Having Parkinsons keeps me motivated to exercise daily.
Leslie Davidson
I was diagnosed with Parkinson’s 16 years ago. At the same time,I was becoming a caregiver for my husband who struggled valiantly with Lewy-Body dementia. We talked about the changes we were seeing in each other and we decided to be open with friends and family. That was a very good decision. The more we shared , the more the support came our way, often unasked for but so appreciated. When, despite the help of so many friends and neighbours in our small town town, I could no longer look after my husband, I made the excruciating, heart and soul breaking decision to see him placed in our local long-term care facility. I did not think I would ever recover from the guilt and pain of his first months away from home. I spent most of every day with him and learned that, despite the profound changes, there still existed an unbreakable bond between us and it was as full of laughter as it was of tears. I started writing down the stories of our lives. As I wrote, I came to see how lucky we were in the fact of our two beautiful girls, the grandchildren who regularly visited their grandfather, pushing his chair, wiping drool from his chin, laughing with him at jokes only they were able to share with him. We gained a measure of freedom when our facility purchased an amazing wheelchair and e-bike combination that I pedalled him in , all over the quiet subdivision around his “home”. I wrote this down, too. He laughed. He laughed with Joy his first ride. He laughed with joy on every ride after that and there were many more joyful rides. Recreation Director of our facility had taken a page out of Atul Gawandes wonderful book on end of life care, entitled Being Mortal. Gawande raged care providers to see beyond the “dangers”and to allow rich experiences, joy, touch, laughter, and love to enhance the quality of life of our loved ones confined to institutional care. Is not always have to be as sad as it appears to be in most places. My husband smile was so beautiful,so it staff members used to work for it, engaging him with their smiles and their stories and their love.
A man who lived in the subdivision where we used to ride that trike, “ I’ve told my wife she’s not to do that for me. I don’t want her spending her life looking after me. It really bothered me seeing you go by.”
I was shocked by his comments, but accepted the truth of him and all I could think was his last few years were as hard as it gets and as rich as it gets, and as moving as it gets, as powerful as it gets, and as meaningful as it gets. That motivated me to write a book. To tell it all… the stories of joy and sorrow. The stories of love in our family.
Stories of the people who sustained us . The stories of his courage and grace. Stories of our shared laughter. As I move into my 17th year., I have a book of stories to hold in my hand, to keep me laughing, to keep me remembering, to keep putting 1 foot in front of the other because anything else, anything less is unthinkable.
I didn’t mean to write all this. Sorry.
Sue Vee
Greetings from Canada! About five years after I was diagnosed, I started taking yoga teacher training to tackle my symptoms. Through that teacher training, I met the most wonderful, amazing group of people that have been so helpful and crucial in helping me manage this disease much easier and just managing life much easier as well. It’s a double-edged sword for me. Much as I hate Parkinson’s, I never would’ve met these people if I didn’t have it, and these people are so special to me , and they certainly can’t imagine life without them . So I can understand about the gratefulness part. Thank you!