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…

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Taming Chronic Headache Pain

headache pain

Gary woke this morning without a headache. The first pain-free moment in 12 very miserable years. Complete pain relief. I just want to read those words over and over. A chronic headache or migraine sufferer will understand the long and tearful journey. Imagine the torture of a migraine mixed with the agony of a cluster headache for 76 unending…

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Vitamin D : Feed Your Brain

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Vitamin D : Feed Your Brain   One detail Gary’s neuropsychologist recently brought up was his low vitamin D level. Everyone knows calcium and vitamin D help maintain healthy bones, but we had no idea the role it plays in cognitive decline. Studies found patients with a vitamin D deficiency experience faster declines in both episodic memory and executive…

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Time to Rare Up

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Every February individuals, patient organizations, NIH, medical researchers, hospitals and schools, universities and pharmaceutical companies representing over 7000 rare diseases join forces to raise awareness. The movement began in Europe in 2008 thanks to EURORDIS with 65 countries now adding their voices.  The theme for Rare Disease Day 2018  is RESEARCH You may be wondering what you can do…

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The Frustration Of Hearing Aid Down

Cone of Silence

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…

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The Struggle With High Cost Medications

Struggle

Life with a rare disease or chronic illness has a way of taking over; juggling responsibilities, appointments, kids, and family. Take your meds on time. Eat something. Try to work. Order your meds. Unless you’re lucky enough to have perfect drug coverage the last one is always a heartbreaker. People who battle chronic illness often struggle to cover their…

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Neurology Roadtrip

superficial siderosis on the brain

We made our trip to Gary’s regular neurology appointment this week seeking answers to his headaches. Since he left the private healthcare sector last January and entered the VA system road trips are the rule. His PCP, blood testing lab and primary audiologist are in a clinic in Texas. The hematologist, regular cardiologist, back-up audiologist, dermatologist, and coumadin clinic…

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The Results Are In

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“Does Deferiprone provide a clinical benefit to the superficial siderosis patient?”   If you remember, the April 2017 edition of The Neurology Journal gave us an early peek at what the study findings might be in the final revision of Two-year Observational Study Of Deferiprone In Superficial Siderosis¹. The study was released this past December 28th, and the results…

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A New Chapter For 2018

Honestly, I’m glad to see the back of 2017 Have you ever felt like the proverbial herd of turtles trying to run through peanut butter? Gary’s health gave our family a few frightening moments the first half of 2017. Reality hits when you’re waiting alone in an ER, 200 miles from home. One step forward five steps back, so we’re ready…

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Five-Two Diet Plan Update

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Five-Two Plan Some of our earliest blog posts explained Dr. Levy’s suggested medication dosing schedule and diet recommendations. We dubbed this the Five-Two Diet Plan so we would have an easy way to write about it. Two and a half years in and we can report our high/low iron foods cycle diet plan is a success at reducing Gary’s…

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Life Expectancy of Superficial Siderosis Patients

Time Slip

Life expectancy, on the surface a straightforward question. It’s human nature to wonder “How long will I live?” A life-changing illness and thoughts like this can consume you. Superficial Siderosis Life Expectancy, two words and it becomes intensely personal. The early impressions were dark; no cure, the damage is irreversible and fatal. That word fatal is a definite attention grab. The day…

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Dialing Down The Pain

Feel My Pain

Gary always hurts.   It’s a fact-of-life he can’t run from; from his head to his toes, 365 days a year, 24-hrs a day. Pain. The days his pain scale reads 3 or 4, those are good days.  Most days he can look forward to hitting 5 or 6, but if a headache decides to join in at full…

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Welcome Accessibility

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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…

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Thread of Depression

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Have you ever wondered which is the most frequent and sometimes incapacitating superficial siderosis symptom? Sensorineural hearing loss, ataxia, and myelopathy are all life-changing, but the single most shared symptom members of our superficial siderosis community battle is depression. Not everyone will fall head first into a pit of despair, but the fight for your health wears down even the…

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Is My Ferriprox Working?

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  First of all, we know the mind of Superficial Siderosis patients is full of questions. But if you’re one of the few who uses Deferiprone you want to know is my Ferriprox working? The original Pilot Saftey Trial of Deferiprone by Dr. Levy and Dr. Linas offered the first evidence chelation using Ferriprox could be successful without severe side…

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Staying Woke

You are not alone

  I like listening (ok, eavesdropping) to my granddaughters when they find time to get together. Our grandchildren range in age from a college student, high school, elementary to toddler. Conversations can be eye-opening. You learn a lot: who’s salty, why something’s lit, and being woke. If you follow social media, you see it everywhere. This word stays with…

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Hearing Loss And The Movies

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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…

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The Neuropathy Chronicles 2.0

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Peripheral Neuropathy Symptoms   Hello Pain, My Old Friend   You might remember from one of our earlier posts, The Neuropathy Chronicles, how we managed to tame the burning foot pain that is so familiar to Superficial Siderosis patients. Two years later TCM is still the winner. We saw for ourselves how true this was during early spring when…

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Railroad Spike: Chronic Headache Pain

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Living With Chronic Headache Pain   Chronic headache pain has been in our lives for years. Our Superficial Siderosis community has many fellow sufferers. On good days the pain is a dull throb pecking away, neck, eyes, and top of your head. The not so good days it feels like a hot railroad spike through the base of your…

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Your Life As A Germ Magnet

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Germ Magnet Immune System Life as a germ magnet. The average person will stroll through life never giving much thought to living with a weak immune system. A person with Superficial Siderosis will often find out the hard way that caution should be the word of the day. Every day we’re bombarded with invisible bugs. You think you’ve taken care…

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