← Return to Hearing loss and memory
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Replies to "@joyces Hi, Since you are so new to hearing loss, you may be trying too hard..."
@FL Mary
Actually, I'm not new to hearing loss, just to this degree of it. The Meniere's monster struck big time when I was in my 40s, but only in my right ear. I lost useful hearing as well as balance function in that ear. For four years, I never knew when the horrible vertigo would hit, meaning a few minutes warning before 12-15 hours of vomiting. Back then, there was little knowledge about VRT (vestibular rehab). Docs thought that you couldn't do it while you were having crises. Now, they know that's not correct. My lifetime of playing in ensembles and orchestras came to a crashing halt; for 30 years, I couldn't stand to listen to music because I wasn't hearing what I knew I should hear. I channeled my need to be creative into other activities: intense book design, learning to knit complex Aran patterns, more painting and drawing. I became a moderator for an online discussion group about the disease, which led to designing/editing/publishing three books about vestibular disorders.
As the years went by, I had more and more age-related deafness in my "good" left ear. After a hearing test, the tech said, "You aren't hearing anything in your right ear, and your left isn't so hot, either." My father was profoundly deaf, but we always were able to communicate as we worked together, remodeling houses, fishing, cutting firewood. Mother had no hearing in one ear due to an accident, and she always expected people around her to shape their behavior to her loss. I determined I'd follow Dad's example and place myself in the best place to hear, learn to read lips, etc. Although my hearing continued to deteriorate, I learned to be proactive in placing myself to the right of people, reading lips (now called "speech reading"), guessing at the words I didn't hear. There wasn't distortion or recruitment, so, if I heard sound, I could understand. Over a year ago, I bought an aid for my left ear.
Then May 24 happened, and the Meniere's monster struck again. I had had some signs of problems in my left ear, but nothing serious. In one instant that day, sound went away and distortion and recruitment moved in. One of the very frustrating aspects of Meniere's is that your ability to hear and understand fluctuates from day to day, even hour to hour or minute to minute. Some days, I can hear almost as well as I could before May 24, although the sounds I hear are very distorted. Other days, I can't hear well enough to be bothered by distortion, but recruitment is severe, actually knifes through my skull. I never know how much I'll be able to figure out on any given day. People see me on a good day and think I've gotten much better...and then are amazed when they see me on a really bad day. Even on good days, when I can hear quite a bit, sound is very distorted. I can hear that people are speaking, but only understand a word here and there. The jumble of sound makes it hard to speech read; I think the mess that I hear overrides what I see. Much of the time, I just smile and nod, hoping that some response wasn't expected.
I remain very active. l drive two hours each way to the Portland area to load 400-600 loaves of donated bread every week, even though most of what the people say, either in the warehouse or when I deliver bread to local homeless charities the next day, is a mystery. I'm Curriculum Director for a lecture series, setting up 48 or more lectures per term. Fortunately, much of the organization is via e-mail. Now I always sit in the front row toward the right of the room, with a mic to boost my aid. It's fine as long as the speaker stays near the podium and has a good Powerpoint. I also chair a workgroup about instream water needs for a pilot project that will determine how water is used in Oregon in the future. Workgroup meetings are difficult: lots of technical info. For the November meeting, I rearranged the tables into a smaller area, which helped. I switched to an Android phone because I tried Otter during our last meeting and found that it was close to useless for technical terms. Of course, I didn't know that I'd lose "in the ear" directions while driving with the Android, even though I had researched the various phones. I'm still learning to use this new phone. I had only used a flip phone until recently, when I got an older IPhone to use as a GPS unit for the instream data collection project I set up decades ago and still work for. Biggest challenge is meetings of the entire water group, usually a hundred people or more, often in a difficult setting. I really didn't hear one single understandable sentence during the last four-hour meeting of the larger group. I asked one speaker to send me a copy of her PowerPoint, but she declined. Big loss, as her discussion was about instream needs of fish, etc. (I think!)
I'm beginning to believe that another self-help book is necessary: how to learn to live in a quieter world. If anyone out there would like to contribute, let's do it! I'm more than willing to risk the cost of getting it printed, as I represent a Thai printing firm that prints all-color books inexpensively.
Mary- I think you make some very important points. I especially appreciate your last paragraph here which serves as re-enforcement for what I have already mostly learned. It's good to be reminded! Funny that I think you wrote the word "expect" when I believe you meant ":except".?
@imallears @joyces Great suggestion from FL Mary - "Alone time is good but don’t isolate yourself too much…you need to keep your brain active". There is more and more evidence that hearing problems can contribute to dementia due to lack of stimulation. It makes me wonder, if you are getting stimulation by other means, such as online forums like this, does that counteract the lack of oral stimulation? I think it probably does.
When I am doing something else I never think about my lack of hearing comprehension, I only think of it when I am in that situation, so I am not depressed constantly at all. Admittedly though, when in a social environment it is depressing and frustrating. We do what we can do and hope for the best.
Joyce, what kind of hearing aids do you have? I know Phonak has some great devices to stream conversation directly to your HAs. I have Oticon and the Connect Clip they have but it only helps with streaming one person into my aids. Phonak has a device that you can put in the middle of the table and it streams everyone to your aids. My audiologist is getting me some of these aids for me to "test drive" them in December. They would have to be extraordinary for me to invest in new aids at this point. My Oticons are less than three years old and I paid about $6000 for them so another expenditure like that would be almost impossible, unless as I said, the difference was extraordinary. Then I would make the sacrifice.