Hearing loss and memory

@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.

In reply to JK, Volunteer Mentor @contentandwell, "Great suggestion from FL Mary..."

I believe that participating in an online forum or, in my case, doing research for programs, reports, books exercises our brains. For the next term of the lecture series, I'm doing half of a program about Vincent Van Gogh. First, an art expert will talk about his work, and then I'll talk about how he definitely was NOT crazy, just had Meniere's. This counteracts a general belief and two books that confirmed that Van Gogh was mad. Long before a hearing expert read all of his collected letters and confirmed that they reflected Meniere's, I looked at his paintings and knew they were just how I felt much of the time. Members of the learning institute already are aware that my hearing took a big downturn between Spring and Fall terms!

I have one aid for my left ear, a Costco (Oticon). I was tested for a CI, but failed by 5%, i.e., I could understand 55% of simple sentences in a sound booth. That's a long, long way from real life, even when the tech introduced the wind noise, which is much like the constant tinnitus I have in both ears, tuned to different channels. I've read about the Phonak aids and the neat mic that's selective directionally, but the aids and the mic total something like $7,000 or more. My right ear isn't aidable, so if I qualify for a CI at some point, it will be for my long-useless right ear. Although the doc, who in effects SELLS the CI operation, insists that it works for those with Meniere's, I'd want to talk to some Menierians who've had the surgery. I don't quite believe that a CI could overcome the distortion. Not an issue at present, since I don't qualify.

@joyces I admire how active you are. I was much more active before I had cirrhosis and now, being older, have never returned to that level of activity. Beyond online activities my biggest activity is going to my health club for the gym and on alternate the pool. I believe that being as active as possible is good for a person in very many ways.

I agree, I think these activities like forums or anything that exercises our brains is definitely beneficial in staving off dementia.

That's very interesting about Van Gogh. The various influences on the impressionist painters are very telling.
JK

@joyces

Well, you floored me....you are beyond active....got tired reading all the things you are involved with. Known about Van Gogh for years...thanks for bringing that up....it’s such an interesting thing to tell people. Love the idea of a book about learning to live in a quieter world. Was wondering if there are similar books on this topic already published.
I’ve worn Phonaks for years and switch to the directional mic program quite often. I encourage you to try Live Transcribe for your Android phone. I did not care for Otter. The app is not perfect by any means but I have found it a tremendous help in many situations. When my granddaughter graduated high school in May, I “heard “ the entire graduation program because there was one person at a time at the mic. Same with a separate awards ceremony. I was about 7 to 8 rows away in an auditorium and just held the phone in my lap. I’ve used it in my doctors office so I don’t miss anything. It keeps the conversation for 3 days. I’ve used it when a salesperson has an accent. It’s free.
I switch to Tcoil when using GPS on my phone in the car...I have earlinks that slip over the hearing aid behind the ear. ..not made anymore however. I have a hearing loop that, if I slide it up closer to my head I can hear the voice. I don’t understand it but I am looking at the directions and it is an audible clue for me.
I’ve trialed several assisted devices associated with Phonak , except for the Roger products , and have not found them helpful at all. I can’t imagine adding Menieres and recruitment to an existing hearing loss. Looking about over your post, I would most likely go the CI route myself. I just need to reassured about the magnet’s effect on my eye.

I think you are amazing! I do believe that app would help in meetings....if you could slide it around the table....worth a shot.

FL Mary

Next meeting of the Instream workgroup is next Tuesday, and I intend to test drive Live Transcribe during it. I need to practice with it first, but just trying it out with TV it seems far, far better than Otter. I used Otter during one meeting, and found that it lagged far behind the actual conversation plus just couldn't "understand" any of the tech terms. It was downright useless, even looking at it afterwards to try to recapture some of what I'd missed. I bought a cheap tablet three months ago, downloaded Live Transcribe, but found that the tablet had a virtually useless mic. That led me to exploring options for mics, bought one paired to my aid, but just gave up on the tablet. I figure if I keep throwing $$$ at the problem, I'll find something that works for me!

Big problems are being tired all the time and being so caught up in trying to understand that I CRS (you know, can't remember S***)! As I get closer to, yikes, 80, perhaps the memory thing is just part of the overall picture, but it certainly has ramped up since my hearing went further south. I wonder if I'll still be loading 600-700 pounds of bread every week, or driving for a couple of hours to do instream data collection work on a wild little river when I turn 80...

@joyces
I’m not too far behind you on the age thing and being somewhat tired is part and parcel of hearing loss and age. Nothing wrong with an occasional nap.
You may be overextending yourself but , golly, that’s what keeps us young. I know being a gym rat let’s me keep up with my very active close by family.
And Live Transcribe is only as good as the Mic on the phone. Mine is a Samsung....version 7 I believe which has one of the better mics. I’ve also turned the phone so the mic is facing the speaker rather than me. You’ll find that pictures and videos are better on Androids than IPhones in general.

The app was developed by Gallaudet University. It does not work well in a noisy crowded environment because it gets confused...too many voices to pick up so it doesn’t pick up any. I have used it to hear what the waiter is saying at restaurants and, with a small group, it works pretty well in a restaurant setting. Again, there are times when it’s a complete fail. But, I wouldn’t be without it.

FL Mary

This is the kind of knowledge that's hard to find: which phones have the best mics, which mics work with which phones, which ones work well, etc., etc. I have a brand new Samsung A20. I don't care about photos or videos on the phone...I have a 28-2000mm camera for images. As a designer, I hate working with images shot with phones, for the most part. Yes, if you're extremely careful in previewing the shot, it can work, but, if I had a nickel for every horizon I've straightened in an image shot with a phone...

The meetings where I tried Otter are not lots of people speaking at one, but lengthy technical discussions led by one person at a time. Still, Otter was two or three minutes behind and produced crap instead of tech terms. When I tried Live Transcribe with the same group but with a cheap tablet, the mic wasn't able to pick up anything more than inches away, but it did produce fairly correct text for those next to me. I'm hoping that the phone plus the mic I have will enable me to capture more of next week's tech meeting. If I'm having a good day, I can sort of follow what's being reported, but most days are not that good, and some are downright hopeless, just a bunch of senseless sounds that mean nothing, due to distortion. Even on good days, I can't ID environmental sounds, tell what's running or if a car is coming behind me. I'm super vigilant when walking our one-lane gravel road because there's a big curve between our place and our mailbox a quarter mile west. I always hear sounds (tinnitus plus any environmental sounds--airplanes, mowers, saws, cars) but can't tell whether I'm just hearing sounds within my head or actual vehicles approaching.

I wasn't generally tired until my hearing took the big drop. Just before that, I did some difficult all-day instream data collection and felt fine afterwards. Now, a three-hour meeting just puts me down for the count. When I've done data collection days since the big loss, I'm not nearly as tired as I am after being in a group. I know that part of the stress is watching my husband get much worse, simply because he flat refuses to do anything to get better. Sometimes I am tired due to depression, but I try to avoid thinking about how much less he can do every day. I'm getting used to just doing things all alone...we used to work together for a fishing magazine/book publisher and fish/boat/hike together all the time.

@imallears I had Phonaks before my current oticon aids. I found the directionality of the phonaks to be amazing. We could be in a noisy restaurant and with that on I could hear the other people at our table better than they could hear each other! My audiologist switched me to the Oticons because at that point they had the best technology for clarity which was where my hearing took a dive.

Is Live Transcribe available for all HAs or just Phonaks? I also have an IPhone.
JK

The app is for android phones- any heating aids would work. Olly is an app for iPhone- it’s works okay

@contentandwell
As @bookysue mentioned, Live Transcribe is only available for Android phones. IPhones have Otter but I found it lacking in so many areas. I’ve known people who purchased a cheap Android just to have Live Transcribe. I have a Samsung version with a good internal mic so it works for that version and up.
I trialed several brands of hearing aids many months ago. I found Starkey to be better for clarity for me but not as powerful as the Phonaks. I asked my Audi to give me the best of both worlds for new hearing aids and ultimately chose Phonaks again. It was a hard decision but I found the starkeys a little weak. I guess it’s what my brain has been accustomed to. If they were cheaper, I might have bought both brands.

FL Mary