Communication must be a two-way street Rare disease patients often battle a variety of complex clinical symptoms. A visit to your specialist often results in as much confusion by the end of your appointment as at the beginning. Healthcare providers are often under pressure to keep patient face time to a minimum, so clear communication is a vital step in understanding your plan of care. Your doctor needs accurate information to help you. It’s essential patients with short-term memory problems or mild cognitive impairment pre-plan for what they need or expect to learn during their appointment. Gary keeps a small daily notebook where he records his vitals, notes about medication or symptom changes, fluctuations in blood pressure, pain levels and new questions. Without this health diary, he is unable to remember significant details or forgets essential questions whether an appointment is a few months down the road or tomorrow. He brings
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
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
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
The Whirlwind Test Tour We’ve been doing the whirlwind testing tour with Gary’s many specialists these past few weeks. Not only was it time for his quarterly neurology follow-up but we found ourselves eagerly waiting for the first MRI and hearing tests since Gary began Ferriprox this past year. Our health insurance network is being changed from a PPO to a HMO next year, so we suffered few weeks of panic after we received notice from BCBS of Texas. HMO networks are not popular with doctors in our rural area. Seven specialists and one PCP currently provide care for Gary, and not one was in an HMO network. UPDATE: Every specialist but the neurologist joined the HMO network before the January deadline. First Stop Our first stop was the audiologist. Dr. Lee had mailed us a copy of a magazine article this summer from one of her professional publications. It
The two-week update on the ReSound Linx² hearing aids The question most asked, “Do you still like the new hearing aids?” Short answer, yes. But there are so many features we’ve just barely scratched the surface. Classified as Smart Hearing Aids, they can be set to work in tandem with your smartphone with an app you download. This app allows your phone to work as the control for both the preset and customized audio settings. 90% of the time close captioning is no longer needed when watching T.V., but since this is a case of Sensorineural Hearing Loss, there are always problems with tones. Some voices are at a pitch that is just impossible to understand. The first two weeks sound levels were set at a 60% level. Our audiologist explained your brain needs time to process all the new sound. The first two days certain sounds were deafening with some distracting
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.