Remembering ‘Stand up straight!’ and other words of wisdom

Stand up straight! Speak up! Pick up your feet!

Sound familiar to anyone? I thought so. People with Parkinson’s disease often struggle to stand up straight or speak loudly and clearly, and we often shuffle our feet.

The crazy thing is I grew up with my mother constantly telling me to do all those things. Did she have some secret knowledge of what was coming for me?

Let me give you a peek into my childhood, long before my Parkinson’s disease diagnosis in 2015.

I was an unusually tall child, like freakishly tall. All my class pictures from school have me dead center, soaring above the other kids by at least a foot. In fifth grade, I was taller than my teacher. You can imagine my desire to slouch, to blend in, and, because I was shy, to be as invisible as possible.

That was not in the cards for me. My mother was having none of it. So what if strangers thought I was years older than I was? I still had to stand up straight or my mom would let me have it.

“Speak up, for goodness sake, nobody can hear what you say,” said my mother, who seemed to think I had something to say when others, myself included, didn’t.

And I would not even think of shuffling my feet, even if I was wearing slippers, because that was intolerable to my mother. She could give the stink eye like no other.

I moved away from home when I was 19. At that time, I thought,”Finally! I’m free!” Now I think about how young I was.

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Did my mother understand my Parkinson’s diagnosis?

My mother moved here to London, Ontario, in 2010 because she could no longer live independently. My brother and sister lived at different ends of the country, so it made the most sense for her to come here, in the middle, more or less. The move was pretty hard on her and her dementia got worse.

My mother was part of the reason I eventually went to the doctor because I was concerned about the possibility of having Parkinson’s disease. I’d been researching her dementia symptoms with Dr. Google and saw a link between dementia and Parkinson’s. My family doctor, who I’m pretty sure thought I was a hypochondriac, dismissed my fears immediately. Haha, the joke was on both of us. A few months later, a neurologist confirmed what I had suspected — Parkinson’s disease.

By then, my mom was living in long-term care and had severe hearing loss to go along with her dementia. To have her hear anything, you had not just to speak up, but shout at her. So you can imagine how much fun it was to tell her I’d been diagnosed with Parkinson’s. “Mom! “I shouted. “I have some news!”

“Well, you don’t have to shout.” She responded (Seriously? That’s what I thought, but I went with the flow).

I cannot overstate the sadness of telling someone you love that you have an incurable disease. Even if the person can’t hear you or fully comprehend the news, it was a moment of grief that I did not expect.

In her last couple of years, my mother didn’t speak very often, but she would often hold my trembling hand and tell me (in a whisper) everything would be all right. Did she understand my diagnosis? I doubt it, but it was still nice to hold her hand.

My sister and I were both at my mom’s side when she passed away in 2017. When I spoke with one of her nurses the next day, she said, “I hope it was peaceful.”

Peaceful is the last word I’d use to describe her passing. Her breathing had become so loud and labored that my sister and I had to shout at each other just to be heard. There we were, each of us holding her hands and screaming at the top of our lungs that we loved her in the hope that she could hear us. It was anything but peaceful.

These days, as I shuffle down the hall in my slippers, repeat what I’ve said for the second or third time, or check my posture, I often think about my mom and her words of wisdom and honestly miss her.

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.