How old were you guys when you were diagnosed and when did your hearing start needing help?
I was diagnosed in 2003 and didn’t get a recommendation to sacrifice the ear until 2017, two years before going bilateral. It varies person to person. No one can tell you how your disease will progress or that you will or won’t be losing your hearing over the course of years. Unless you go bilateral like I have, you will always have at least one good ear to hear with. Only time will tell, so take comfort in that.
I can’t hear music right anymore. The bass tones are gone in the left ear and impaired on the right. If I want to hear a television program I have to plug in headphones or turn the volume up very loud. I won’t use hearing aids because I’m frequently plagued with ear pain from loud noises, so I have to be careful with the volume and the mastering of modern soundtracks varies so much in volume that it can drive you crazy trying to keep the soundtrack audible and yet not painful to hear.
Bone conduction headphones are my savior. I can only listen to music through them and hear it correctly. I need to figure out how to get them to work seamlessly with the gaming console we use to watch television; get them to work for me without turning the volume off for everyone else when I turn them on. I’m still working on a solution for that.
If you do lose your hearing, you don’t want to be caught flat-footed having to learn a whole new method of communication on the fly. So if you are concerned about going deaf, study hearing loss. Learn American Sign Language. Get comfortable with the worst case scenario so that you can remove your fear of it. Once you are no longer afraid of what might happen, you can try to get comfortable with the reality that you have to face right now.