My acquaintance Bonnie just found out eight months ago she developed APD as she was getting her hearing aids adjusted over the course of a couple of years.
She wrote the following letter to her adult kids to try to help them understand, and offered to share it in case it helps others to read how she expressed what she wanted them to know about its effect:
To my dearest children,
I thought I would put in writing what is going on with my hearing. I can explain it verbally, but, sometimes when written, it can be understood better. So here goes:
Auditory Processing Disorder is an invisible disability, a developmental condition that interferes with the processing of speech. Although my hearing is not good (40% loss) I have a problem with perceiving and decoding what people are saying. (Even if I had perfect hearing I would have the decoding problem … it’s not governed by my hearing loss).
Sometimes although the other person knows what they mean or what they’re saying, what I think they mean or saying are two different things. It’s like having poor cell phone reception, where the signal gets static or drops out.
How it affects me:
It’s difficult trying to keep up with conversations or to understand what’s being said, especially when there is “background” noise. This is especially true when I’m on the phone. This means I must spend extra mental effort to unscramble words. Sometimes it’s the decoding where I bog down. What I think I heard and what was actually said seems fine during the blah blah blah part, and then at the “mumble” section, the letters go bad and I have no idea what the words are. My brain goes limp at this point, thus the puzzled look or handing the phone off to someone else. Doing all this decoding takes up working memory. Because I have to attend to what is being said in words, I have less attention for figuring out what is meant in conceptual content. Discriminating between voices and background noises is difficult. Situations with multiple people speaking are especially challenging because all the conversations and background noises keep weaving together.
My working and short-term memory are used to process the conversation, rather than to remember what I’ve heard. The result of this is that many times I don’t have a clear idea of what the whole conversation was about, because I’ve not had much extra short-term memory left for storage. This again creates mental fatigue, especially at the end of a day.
Verbal directions can be difficult. I have trouble understanding, recalling and keeping straight a series of commands, i.e. … directions on how to get somewhere, steps involved in figuring a deal etc. … Additionally, many numbers/words sound very similar, frustrating for sure.
I am trying to learn how to cope. Talking one on one in a quiet area is great. When it gets to loud in my office, I can shut the windows on each side of me, or even the door if necessary. Speaking slowly is also important as it gives my brain time to “decode” what’s being said. And, if you notice that I still didn’t get it, try rephrasing what you are trying to say. Tapping me on the shoulder, or calling my name before you speak to me will get my attention and thus I can concentrate on the conversation. Many people think that APD is a volume problem and that talking louder will help, not so. My hearing aides will help with my hearing loss as a whole but they can not help with the APD.
It’s also going to affect my speech response to some degree as I’m trying to “decode” and answer back … it equals a slow response at times or at times I have a problem pronouncing my words properly… sort of like being drunk and trying to talk without slurring.
Meantime, my goal is to learn to lip read so that when the time comes that my brain decides it doesn’t what to decode anymore … I’ll have something to fall back on.
There is no cure for APD. It’s something that I will have to live with and cope with. It will allow me the opportunity to learn more about it and to be better able to find ways to communicate more clearly and more efficiently. Please understand that my conversational difficulties do no affect my motivation or abilities to learn and move forward. I’m stubborn like that.
I’m not looking for pity or want you to feel sorry for me as I’ve been blessed with so many things, i.e. … I can see, talk and get around without any assistance. I’ve been blessed with you all as my children and I couldn’t ask for anything more. I just wanted you to understand what’s going on, or not.
I love you all,
. . . Bonnie adds she has two grown sons, their wives, a grandson and a very supportive boyfriend (as I recall, she is in her 50s). Her journey to a diagnosis was, “I just couldn’t hear well. I had an MRI of my brain to make sure everything was OK and went back to my ear, nose throat doctor for exams of my ears and all was perfect. After my old audiologist retired, I had to get a new one and after much more testing, I was diagnosed. Actually, as we get older, it is something that can be acquired as our brains naturally aren’t functioning at top speed … I’m still having some other difficulties, and I’ll be going back again, as I seem to have some clumsiness about me and my hearing is diminishing more so.. but, that is to be expected from what I understand. I do hope my article helps others and thanks for your support as well.”