Educating others about hearing loss and deafness

@arrowshooter

Hi,
I hear pretty much all sounds also but they are not and shouldn’t be distracting. There are noise suppression programs and hearing aids like my Phonaks that are automatically supposed to self adjust. My favorite is the manual directional program which really diminishes the sounds around me and is great in a noisy restuarant or shopping mall. I turn my aids down, not off, when driving.

You shouldn’t be uncomfortable with everyday environmental noise and I remember when I first got up my upgraded Phonaks how I hearing too many unnecessary sounds. My Audi adjusted that.

My loss is profound and I have been told by many hearing aid professionals that they are surprised I do so well....also that my loss is a “difficult” one. I told my Audi that speech discrimination is my primary goal but so is listening comfort. Give me both without sacrificing either one...and she was able to get that balance.

A quiet brain leads to a longer healthier life . Go back to your Audi and demand an adjustment. I left a hearing aid specialist once because she threw in the towel and said she couldn’t help me anymore. All that noise is not doing anything positive for your overall health. Get a new Audi if necessary.

FL Mary

Thanks Mary, I've pretty much tried most of what you suggest without success. My loss is severe above 1K hz and profound above 2K hz. I recently went from Starkey to ReSound (2 pair) to Oticon (2 pair) and the biggest difference I can detect is that the ReSound were the worst. And, yes, there were many adjustments along the way by several VA audis and one private practice audi. I don't think I have to tell you how frustrating it is to hear but not understand. The different noise suppression programs just produced different sounding noise to me. The Oticon produce the best sound for me and allow me to hear some birds and crickets etc, but they do little to improve my speech understanding. I can enjoy music (instrumental) through HL and streamers, and when using an induction loop or streaming device I do very well with lectures and TV. (I generally use t-coil only program)

I am learning how to speak up for myself. I have learned to tell people to keep their usual speaking volume. One time a nurse came into a quiet empty waiting room and loudly said she was going to take my blood pressure. Another time a technician at Mayo gave me an IQ test in a volume that was clearly stressing her voice. I wish I had explained to her that mine is sensorineural loss, which is not improved with volume increase but is improved with quiet background, slowing speech down, and allowing me to see her face clearly. It is getting easier for me to ask people to slow down. I still have trouble when people get agitated after I ask for a repetition of what they said. Some people react as if I wasn’t listening. I’m learning, and will be glad to read any tips you might have.

@mpeters
Good for you and the more you do it, the easier it will become. May I suggest that you repeat back to the person what is was you DID hear instead of asking them for a complete repeat. For example...you’re in a doctors office and she says “ please turn to the left” You didn’t hear the word “ left” So you say ...”which way do I turn “ or something like that. Some people do get agitated and annoyed....too bad.
And don’t ever let anyone tell you “Never mind” Insist on a repeat. That’s just so rude and dismissive. Assertiveness with a smile.

FL Mary

I have bad hearing in both ears,with epilepsy it affects the hearing so I can empathize with you especially with Temporal Lobe Epilepsy

I try to remember to ask them to put into different words (rephrase) what they said, rather than repeat it exactly.

@banshee
The best advice I ever received about repeating was to repeat what it was I DID hear. For example .. someone says “We’re all going to Digornios for pizza. “ I would say
“We’re all going where for pizza?”
Or I will tell what word I didn’t hear...as in “I didn't get the last word” or “who?” Names are a big problem.

For many years I have used a sign (on red paper) when I visit a Doctors office that states “Patent hard of hearing...may not hear name called.” and indicate my name on the sign. I’ve asked the front desk of Doctors offices to place it on the outside of the chart or to bring it with them when they call my name, Recently , in a large eye clinic which I have been to recently for monthly eye injections, I had to amend the sign to indicate they must bring it with them when they cone out to the waiting room as they were leaving the chart in the exam room. When I spot the red paper, it’s a visual clue for me. It depends on the size of the office. Or I will just let them know at the front desk. Fortunately I don’t need to go to a lot of Doctors. Whatever works. I can never sit and read a magazine when Im waiting...always on the alert. If it’s a new place with different exam rooms, I’ll ask which room will the Doctor’s assistant will be coming from. I’ll tell them I am by myself and have no one to hear for me, I can play the sympathy card when necessary.

In any situation when it truly matters that you know everything being said, like a mechanics shop etc., it pays to be upfront. I tell them about my app also and it usually intrigues them and they want to see it or know the name. Most people are caring and helpful. It doesn’t hurt to have a nice smile on your face.

I got off track but it’s so important and it’s an anti isolation independent approach for all of us in the twilight zone of the hearing/not hearing world.

FL Mary