Embrace The Crunch

Embrace the Crunch

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Most of us never give much thought to how our sense of smell influences our sense of taste. The pleasure from appreciating the dimensions and nuance of flavors disappears when you lose your ability to smell. When this occurs later in life the impact is a difficult adjustment. While Superficial Siderosis may bring many neurological changes one of the more exasperating symptoms is anosmia. Cooking for someone with anosmia requires planning along with a little experimentation. Be prepared to embrace the crunch. Anosmia, the absence of olfactory sensation can either be congenital or acquired. Gary’s sense of smell faded slowly, taking more than ten years to completely disappear. Pretty handy if you’re asked to dispose of something stinky but a poor trade-off for being able to enjoy the scent of fresh flowers or the aromas of an excellent meal. Keeping meals interesting for everyone at the table is not easy.

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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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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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