Parkinson’s disease may slow this chatterbox down, but it won’t stop me
My speech problems are one more communication barrier, but I still have a voice
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I have always been a voracious reader. I was in love with books even before I could read them, and always wanted the grown-ups to read to me.
The Mr. Men and Little Miss books were an early favorite. With titles like “Little Miss Somersault” and “Mr. Nosey,” the books were short, colorful, easy to read, and relatively small, maybe the size of a CD case, making them easy to carry around. I remember getting ready for church one morning and making sure I had a Matchbox truck and my absolute favorite Mr. Men book in my little girl’s purse. A lady is always prepared!
That favorite was “Mr. Chatterbox.” My family thought it was a particularly apt book for me, because in addition to a passion for reading, I also had a passion for talking. My parents were educators and my brother was seven years older, and they knew a lot of things, so I liked to ask a lot of questions. Once I got hold of the “Mr. Chatterbox” book, everyone started to call me that.
Once I grew up and started working, my job required me to speak up at meetings and give presentations, and I developed a propensity for speaking quickly, such that I often had to slow down for the benefit of my listeners.
Slowing down
When I was diagnosed with early-onset Parkinson’s disease more than 12 years ago, I was told that two symptoms could be slower speech patterns and lower speech volume. This wasn’t a problem for me for more than a decade — I remained the loud, speedy chatterbox I had been before — but this has started to change in the last year or so.
I now find myself having to work much harder to speak. Sometimes my tongue feels like it’s too big for my mouth, and I have to think about talking around it. I have to speak very consciously, slower and louder, to be heard, and I often accidentally bite the insides of my cheeks, tongue, or lips to the point where I have scars in my mouth. This, along with facial masking symptoms, can leave my meaning unclear at times, and leave me and my listeners struggling.
At a recent neurology appointment, my doctor and nurse noticed my gait was unsteady, and my speech was slurred. As we tweaked the settings on my deep brain stimulation system, we got to a point where we could optimize either my walking or my talking. I went with walking because I’d rather slur than fall over.
People can still understand me, and my speech problems don’t show up all the time, but, along with my tiny, illegible handwriting, it is one more communication barrier to overcome. But I won’t be stopped or shut up. I have a voice, and I continue to keep using it to fight Parkinson’s disease and share my story.
Some days, I just have to work a little harder to be heard.
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.
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