Even with hearing aids, I still have difficulty in group settings
Background noise and multiple conversations pose a challenge
Facioscapulohumeral muscular dystrophy (FSHD) primarily affects muscles in the face, scapular region, and upper arms, hence the name. Progression is different for everybody, but the condition can eventually affect most, if not all, muscles in the body.
As an additional “bonus,” FSHD also can cause nerve deafness, a condition that tends to make words sound like an unintelligible mishmash. I’m not sure what percentage of those of us with FSHD struggle with nerve deafness, but I know I deal with it, as well as moderate high-frequency hearing loss from my days playing in bands. It’s not fun.
The net result is that I have difficulty hearing and understanding what people are saying to me. This is especially the case with female voices.
I am fortunate to have hearing aids, which amplify higher frequencies so I can hear women’s voices a little better. The hearing aids help greatly when my wife, Wendy, my daughter, Jill, and I are chatting around the dinner table or hanging out in our living room.
However, I don’t hear people nearly as well when there’s any kind of background noise. Wendy and Jill have learned to mute the television before they start a conversation with me.
A garbled mess
My hearing loss has a far greater impact in any kind of group setting. If you’ve read my previous columns, you’ll know that Wendy and I moved to Pittsburgh a couple years ago to be closer to our kids and grandkids. To a large extent, it’s worked out wonderfully. I love our family get-togethers! However, there are occasional issues, especially when it comes to my hearing aids.
When my immediate family gets together, there are 11 of us in total. We gather often for holidays, grandkid play dates, birthdays, vacations, outings, and other celebrations.
My wonderful grandchildren — Iva Jane, 5; Julia, 5; and Theo, 3 — are more than a little excited when they get to see each other. At their ages, this excitement gets noisy, with screams of delight at a gift they’ve received, squeals of laughter as they enjoy playing together, or cries of anguish as they melt down over the need to share toys. Unfortunately, my hearing aids amplify this excitement to the point that I am forced to turn them down.
Of course, with the hearing aids turned down, I can’t understand what anyone is saying, so I turn them back up when the kids have calmed down. It seems like no more than a few seconds after I turn up the hearing aids that the noise picks back up and I’m forced to turn them down again. We repeat this cycle over and over.
I don’t want to be too harsh on my grandkids. When the family gets together, everybody tries to catch up with each other. This often leads to three or four conversations happening around me at the same time. I’m glad that everybody is chatting comfortably, but I’m unable to focus on specific voices. All I hear is a garbled mess of disjointed, unintelligible words.
I struggle in other group settings, as well. I enjoyed the food at a recent covered-dish dinner after a church service, but with everybody talking at once, it was difficult, if not impossible, for me to carry on a conversation.
I often have difficulty hearing when we eat at a restaurant. My hearing aids are pretty high-tech, so they adjust modes automatically. I can also select from normal, music, or restaurant modes manually. I’ve found restaurant mode to be a bit helpful when we’re eating at a relatively quiet establishment, where carpeting, drapes, and other sound-absorbing materials reduce the echo. I won’t mention any names, but the larger restaurants that are pretty much a pole building with the acoustics of a high school cafeteria are a real challenge. In those cases, I usually forgo any attempt at dinner conversation and just try to enjoy the food.
I don’t plan on skipping family gatherings, church covered-dish dinners, or restaurant dining anytime soon. My father, although he was never officially diagnosed with FSHD, had symptoms of the disease, including nerve deafness. Before his passing, he told me that he enjoyed family gatherings, but usually just turned his hearing aids off, sat back, smiled, and enjoyed the moment.
My dad was a pretty smart guy. Moving forward, I think I’ll try his strategy. Like Dad did, I want to savor every moment I get with family and friends, even if I can’t hear them very well.
Note: Muscular Dystrophy 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 Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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