Inescapable Realities

Realities

Superficial siderosis progresses slowly during the early years. This may be an unintended blessing considering the years many will spend searching for a diagnosis. Gary’s story timeline has always remained closely aligned with physician estimates. The inescapable reality we must now face is this disease has entered an accelerated stage. I need to be clear. It’s not the superficial siderosis accelerating; it’s the overwhelming effect the symptoms of this disease inflict on Gary’s body. The changes are pronounced and palpable. Visible and Invisible Our life revolves around doctor appointments. Ten trips spread over three states in four weeks. Gary receives very attentive care but I often wish there was something doctors could offer him besides platitudes and bandaids. The symptoms are winning the battle. Gary suffers falls almost every day. We had a physical therapist coming to the house twice weekly for two months; by his eight-week evaluation they threw

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New Technology With Hearing Loss

Hearing Loss Tech

  Searching For Clarity With Hearing Loss Conversation for people with sensorineural hearing loss can feel like a never-ending game of hangman or charades. The clues are there, but the most critical letters (sounds) are missing, so you wind up playing an internal guessing game. We find ourselves replaying a frustrating loop of “guess the word.” Sometimes Gary can make a reasonably close guess if he understands the context of what I’m trying to say. More often it’s five wrong tries, and I’m forced to substitute a different word or entire sentence. In the past, modern hearing aids have done a fantastic job of increasing sound. Those with SNHL loss know louder is not the answer. When Gary’s audiologist told us about a new model of hearing aids with technology designed to help people who have a profound sensorineural hearing loss it was welcome news. The audiologist fitted Gary four

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The Frustration Of Hearing Aid Down

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If hearing aids are your lifeline to the world, you get what a pain it is when one goes down. When both go down at the same time, it’s a tragedy. If this happens to someone you care about, be prepared to step up. Frustration is the polite description of what is coming. Gary had complained his hearing aids didn’t seem to be working as well. We realized his hearing might have just gotten worse but thought since it had been eight months maybe they needed an adjustment. At his appointment, Gary explained some of the problems he had understanding speech, especially in crowded, noisy environments. His audiologist checked the levels and tried to fix a feedback issue one hearing aid was having but decided he should send it in for repairs.   The audiologist suggested taking impressions and switching to custom molded domes.   He finished adjusting the other aid

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Hearing Loss And The Movies

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Technology has made settling in on the couch to watch a good movie inviting once again for those with hearing loss. But honestly, some films are just meant to be enjoyed on the big screen. Gary’s hearing loss continues to worsen. He no longer understands the dialog on television without closed-captioning enabled. Background noises, the music or the tone of an actor’s voice is a big muddle. We owned a restaurant for ten years. The only days we closed for many years were Thanksgiving, Christmas Eve and Christmas. Christmas Eve was spent shopping. When Christmas day arrived we were always exhausted so we began a family tradition. Chinese food for lunch and going to the movies. A day-long film festival. The tradition continued long after the restaurant became a memory. A Downhill Slide When Gary first began wearing hearing aids, sounds were clear and conversation enjoyable. It went downhill after

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A Very Good Day

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 Bilateral Sensorineural Hearing Loss Phantom smells and worsening hearing were the first inklings something was wrong. Our first ENT (Ear, Nose & Throat Specialist) decided the smell problems were the result of some past sinus infection. Gary’s hearing loss issues were probably environmental from his military service as a jet engine mechanic and simple aging. The doctor’s advice was to learn to live with it. Our next ENT was a two-hour drive from home. Dr. Garb was very personable and seemed genuinely interested. He ordered an audiogram so we could have a baseline level but still no answers. Today, of course, we know the diagnosis is Bilateral Sensorineural Hearing Loss. Hemosiderin is killing the function of Gary’s vestibulocochlear nerve (eighth cranial). This nerve handles sound transmission and equilibrium information moving between the brain and inner ear. The latest hearing test in December 2014 shows a decline to 30% functional hearing.  

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