First in a series.
I recently heard a rumor that I wasn’t doing very well. An old friend dropped by and spoke to my husband, John. The friend said he’d heard from someone else that my health was failing. Near death, by the sound of it.
Communication can be tricky, I know.
I’ve mentioned this several times, but one of the results of having deep brain stimulation surgery for Parkinson’s disease — a procedure that involves implanting electrodes in the brain to regulate abnormal brain activity — has been slow speech. It has to do with the settings on the stimulator and where the speech center is located in my brain, right beside the part that causes my tremors. If I completely get rid of the tremors, I not only struggle to get words out, but it also feels like somebody is choking me. If the settings are adjusted so that my speech sounds “normal,” then my tremors go wild. Right now, I’ve struck a balance, with a bit of a tremor and a slight speech impediment.
Why we’re misunderstood
I have many friends in the Parkinson’s community who also have problems with communication, mainly due to speaking very softly. We’ve had many discussions about our speech issues, and generally, we all feel the same: frustrated, alone, and deeply misunderstood.
For instance, I’m frustrated when I can’t hear others, and when I realize they can’t hear me. You can only hear or say “I beg your pardon?” or “Come again?” so many times.
The worst is when someone interrupts me to finish my sentence when I speak too slowly. I know they do this out of care, but it makes me feel small and unimportant.
So what can you do as a friend or caregiver of someone with Parkinson’s speech issues? The answer is simple: Be patient. It may take me a bit longer to get all of my words out, and I might not tell a joke as quickly as I used to, but it’s still my joke!
Also, when well-meaning acquaintances direct their questions about my well-being to my husband rather than asking me directly, it can make me feel overlooked and unimportant. Hello, I’m right here!
My husband usually responds with, “Why don’t you ask her yourself? She’d be more than happy to talk to you about that.” This simple act of recognition can make a world of difference.
Parkinson’s disease can make us feel small and invisible. The only way for us to be seen and heard is by speaking up, so please allow us to do just that.
In part two of the series, I’ll discuss what happens when we can’t get our words out. Please join the conversation in the comments below.
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.
The post Navigating the effects of Parkinson’s disease on speech, part 1 appeared first on Parkinson's News Today.
| https://parkinsonsnewstoday.com/columns/navigating-effects-parkinsons-disease-speech-part-1 |
0 Comments