New adventure! This one doesn’t involve much travel but does involve a huge life change. I have hearing loss – one of millions of Americans who do. My loss is quite severe and had interfered with who I am. I love people, I love talking to and connecting with people. With hearing loss, communicating verbally becomes terribly difficult. I’ve been posting on the Mayo Clinic Hearing Loss forum about my adventure toward improved communication:
I’ve been loosing my hearing for around 25 years. It started a couple years after my first kidney transplant – or that’s when it got bad enough to go see an audiologist to see why I was saying “What?” “Pardon?” “Could you restate that?” I would get home from work seeing clients and would be utterly exhausted, for no apparent reason. The audiologist I met with, Dr. Robert Sweetlow, advised a hearing aid (HA) for my right ear. I can’t even tell you how many HAs I’ve had since then – about enough to buy a nice new car I’d guess, since they run between 2 and 8,000 dollars each.
As my blog readers know, my wife and I work and play for an RV Caravan tour company, we are wagon masters and/or tail gunners as assigned by the company. We usually travel with 16 to 25 RVs and go all over North America. Amazing work and all about connecting with people. I’m with groups of people in all kinds of challenging hearing/understanding situations.
Interestingly, for many with hearing loss, raising the volume becomes less and less of a problem. In fact, after a while one’s ears can become sensitive to volume. I am sensitive to volume, so loud speech or noises throw me off. It’s called Recruitment for some odd reason. What happens though, as recruitment becomes a problem speech recognition (especially of certain parts of speech) goes down. So I lost the ability to discriminate between sounds like
In 2015 my discrimination (an index of how well we understand words using 50 single syllable words, score is a percentage) was at R-46, L-32. In 2017, I got Resound 3D Linx HAs (they’re for severe/profound hearing loss) and they help a lot with my declining speech understanding and work with an iPhone app for great adjustability. Those aids are wonderful. I love how versatile they are!
This year (2019), after a particularly challenging caravan, I decided to make an appointment for another hearing test and adjustment – my aides were just not working! I just wasn’t understanding people and was cranky and exhausted all the time. In Albuquerque, NM I met with Dr. Terry Sankovitz. After the exam, Dr. Terry showed me my discrimination score… R- 14, L-12. Whaaat? Seeing it on paper my whole insides went cold and still and I got really scared, I was stunned. Barb, my best friend and wife, was just as shocked when Dr. Terry shared the test with her.
This was a different Discrimination test. For the first time in all the years of tests, this doctor didn’t read the usual list of 50 words to me with her mouth covered. She used a recording of a professional speaker, male, speaking at normal speed. The test is given without HAs, wearing ear buds and the volume is adjusted to my comfort level.
Dr. Terry said that there is no point adjusting my hearing aids further, louder wasn’t working. When asked what improvement to my hearing I dream of, I answered, “To hear and understand my son’s and grandchildren when they talk to me!” For some reason, male voices can be difficult for many with hearing loss to understand. She talked about my options, one of which is cochlear implant and gave me a lot of information – even explained the testing for CI qualification. Dr. Terry offered to get me in for testing soon so I could begin the process and boy was I tempted! We had an appointment to see some people and couldn’t miss the only window of time they had for us to visit. Besides, I had to let everything I’d learned sink in and figure out what I was going to do.
With a cochlear implant, there is no going back. You’re implanted period. But wait… with my ‘discrim’ I couldn’t go back anyway. The other option would be continuing to isolate and eventually to withdraw.
Understanding .4 in one ear and .1 in the other is deaf. I am highly functional because I speech read; read bodies, context and situations – in the right situation I do okay. However, in vehicles, in low light or when someone’s face is backlit, in places busy with conversation, when music is playing, with there is crackling or static noise – I am utterly at sea.
It just happened that Cochlear America was hosting a panel discussion the next day, for people interested in CI (cochlear implant) and for those with CIs. Did we jump on that opportunity!!! WOW. What an eye opening experience. The group moderator was a woman who had been deafened as a child and as an adult had chosen bilateral cochlear implants. The panel talked about their personal cochlear experience. Here’s the best part. They hired a court reporter to transcribe speech and captions popped on a screen for all to see. I am not sure anyone in the room needed those as badly as did I – what a miracle it was to see what everyone was saying.
A rep from one of the three Cochlear Implant companies was at the meeting answering tech questions from recipients. She had a box that contained the whole Cochlear Implant (CI) system, internal and external.
When I walked in the door, I felt unsure and when I left I felt elated. Arms full of booklets and information, Barb and I talked about the meeting and agreed that both of us felt a sense of hope, at last.