Tips For Developing Great Patient-Provider Communication Skills

Patient Provider Communication Skills

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 his notebook to every regular office or hospital visit. Physicians find details with dates and times very helpful. It also helps if you can tell the story of events leading up to a specific incident. I was doing my usual ____ late in the afternoon, and then I was doing…

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New Technology With Hearing Loss

Hearing Loss Technology

  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 days ago with the newest ReSound LiNX 3D hearing aids and custom ear molds. A month earlier Gary had begun using ear molds in place of standard tulip style domes. He found they offered some improvement by helping to filter out some of the background noise. Gary noted an improvement…

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The Frustration Of Hearing Aid Down

hearing bubble

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 and let us know he’d be able to have the newly molded domes ready when we came back to pick up the repaired hearing aid. He also wanted to get an updated audiology exam on Gary to see if his hearing was declining. This visit was in early December. The holidays…

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Welcome Accessibility


If you’re a return visitor to our website, you may have noticed the crazy color and layout changes that have been happening multiple times a day.   Gary’s eyesight has made reading more difficult not only here, but on a lot of online sites he likes to visit. Web accessibility is vital to people with disabilities, so we felt an obligation to try removing barriers that prevent natural interaction with our content. Our primary audience is people with disabilities. Sites like this one have a responsibility to develop content all users can enjoy equal access to both information and functionality. So we’ve done a little winter clean-up, changed the front page photos and found a new color theme. Because honestly, it’s rather sad seeing the same thing for two years. We’ve added two new features this week. The first is located on the top right corner of our site.  If you click on the accessibility icon, it will bring up a menu of options for the sight impaired. You have the opportunity to view the site in grey scale. Underline all the links, so no need to search forever. Magnify anything you’d like to get a closer peek at or change…

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Hearing Loss And The Movies

hearing loss accommodations movie captions

Technology has made settling in on the couch watching a good movie inviting 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 actors voice is a 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 arrived we were exhausted; we began a family tradition of having Chinese 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 started wearing hearing aids, sounds were clear and conversation enjoyable. It went downhill after the first year. He was fitted with his second pair this past spring. A new hearing test showed significantly lower thresholds. He is completely deaf in the higher tones and considered profoundly impaired in the lower end. The information tells us nerve degeneration in Superficial Siderosis is a slow process. Two years feels rather speedy for such…

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Testing, Testing, Hope

Test Hope

The Whirlwind Test Tour We’ve been doing the whirlwind testing tour with our many specialists these past few weeks. Not only was it time for our quarterly neurology follow-up but we found ourselves eagerly waiting for the first MRI and hearing tests since starting on Ferriprox this past year. Our health insurance network is being changed from a PPO next year to an HMO, 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 no one was in an HMO network. UPDATE: Every doctor but the neurologist joined an HMO network before January.   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 outlined audiologists now being asked to screen patients who present with a sensorineural hearing loss. Identify case history, determine if an MRI and neurological referrals were necessary. The article then describes a diagnosis of a rarely seen neurodegenerative condition called Superficial Siderosis, its effect on hearing loss and the importance of early diagnosis.…

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Whole New Ballgame: ReSound Linx²

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 clicks (the dog’s tags or change in the pocket). That leveled out during the week. When we went back for the two-week follow-up, the most significant complaint was sound had become muffled and not as clear as the first few days. Since it didn’t take long to get used to…

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A Very Good Day

Sensorneural Hearing Loss

 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.   Isolation Watching television was becoming impossible without the aid of closed-captioning, movies theaters were hit or miss; We had begun to speak looking directly at each other or understanding was garbled. Cell phones were becoming an exercise in frustration. But the worst was being surrounded by people. Imagine being in…

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