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

Did my mother have some secret knowledge about my Parkinson's diagnosis?

Christine Scheer avatar

by Christine Scheer |

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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.

Comments

Bette Ann Pintar avatar

Bette Ann Pintar

Join the crowd. I don't remember her telling me to stand straight and speak up but I sure remember her telling me not to shuffle my feet.

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Christine Scheer avatar

Christine Scheer

Haha!

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Carol Z avatar

Carol Z

Christine....that was beautiful. Thank you so much for sharing. Moms are so special, no matter what.

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Christine Scheer avatar

Christine Scheer

Thanks Carol! Yes, Mothers are special no matter what!

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Marla Wise avatar

Marla Wise

Do we have the same mom? 🥴 I also was diagnosed with Parkinson’s though my mother had passed..however, those exact quotes came from my mother as well. It’s funny how I notice my own adult kids slouching or dragging their feet.

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Christine Scheer avatar

Christine Scheer

LOL.

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Armine Papazian avatar

Armine Papazian

Thank you for your beautiful and touching piece.

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Christine Scheer avatar

Christine Scheer

Thank you Armine. This was a bit of a difficult one to post, for sure. i thought it should come with a warning - "emotional baggage being unloaded - proceed with caution!"

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Willi LAUFMANN avatar

Willi LAUFMANN

Hi Christine I enjoyed reading your article it is however not me that has Parkinson it is my wife Lois ,she was diagnosed 15 years ago and because of her doing exercise we have been lucky so far that Parkinson has been manageable . However over the last 6 month she is starting to shuffle and her legs freeze frequently also it takes a lot longer for her medication to kick in.
In summery exercise is definitely beneficial , Lois is currently joined a Parkinson advanced exercise group which she loves.
Have a wonderful new year

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Christine Scheer avatar

Christine Scheer

Thank you Will! Yes, exercise is the key. All my best to you and your wife.

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Julie avatar

Julie

Good article. I do try to get my tall husband to stand up tall because I think his balance is better when he can stand up as much as is possible. He still leans forward a little but it just seems like he is safer and has less back pain when he stands up straighter. He does LVST to help with voice strength

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June avatar

June

I am very much joy to the story. I like it very much and it made me feel very good with Kate above. I understand her feelings I just need her feelings.. I myself do not have Parkinsons but my husband does. And wow is it ever hard to deal with.. Does anyone know how to make my husband feel better?. Because he is so much mentally unstable and mean now?..

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Christine Scheer avatar

Christine Scheer

Hi June, You should probably talk with your husbands doctor, hopefully they will have some solutions for the both of you. Hang in there!

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Kate Wilbur avatar

Kate Wilbur

I have Parkinson's disease had for five years is 49. I really enjoyed your story. I don't know it just made me feel better. Thank you for posting it.. I myself have never been married. And I actually had to move back in with my parents which who are almost 80 years old, which is very hard for them to do it and I feel badly for them. They have to deal with me and I'm very nice he he he anyway, thank you for posting your slice into your life. :-))

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Christine Scheer avatar

Christine Scheer

I'm glad my story made you feel better! All my best.

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Lori DePorter avatar

Lori DePorter

Great read!. When I was diagnosed, my dad said, “so you shake a little, we still love you.” Then he was diagnosed with Alzheimer’s and the dynamic duo featured in my column - Batman & Robin was born!,

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Christine Scheer avatar

Christine Scheer

I remember your Batman and Robin column! My mother and I weren't exactly the dynamic duo...

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Murray Neilans avatar

Murray Neilans

The first time I have really read much in PNT. I usually just delete the E-mail but for some reason I decided to read the the entire report. I am glad I did. Your words prompted me to add a comment which I never do. I was diagnosed in March 2019 . My wife of 53 years died in Jan. 2021 so it was kind of a double whammy. Living alone with PD presents certain challenges but I am coping as my PD so far is manageable. I look forward to your next column.
Regards

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Christine Scheer avatar

Christine Scheer

Hi Murray, Thanks so much for taking the time to read my column. I’m sorry to hear about your wife.That does sound like a double whammy. Hang in there! Christine

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Gabrielle avatar

Gabrielle

My husband with parkinson was dx with spinal stenosis last year. Looking back on x ray of his spine the problem was there before his dx with parkinson. Did the stenosis cause the parkinson ? He was on the computer for over 40 years with his neck bent.

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Sam Sen avatar

Sam Sen

Thanks so much for your post Christine. Beautifully expressed!
I grew up in Ottawa, Ontario and currently live in Houston Texas. I was diagnosed with PD in February 2022 and I turned 65 last year. I have found that exercise has had a multi-pronged beneficial effect. Along with potentially slowing down the rate of progression of PD, it has led to having a "stronger motivation" to continue to exercise, which directly is contributing to better health. There isn't a day that I wake up (even with the many symptoms of PD) where I don't feel grateful for the opportunity to take better care of my fitness, than I would have, otherwise. Like it or not, we are all aging, so having a plan to try and better mitigate the effects of PD, also can, through inference, slow the rate of progression of aging.
Sam

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Christine Scheer avatar

Christine Scheer

Hi Sam,
We are definitely on the same page with exercise!

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