Neurodegenerative Vision Problems

neurodegenerative vision problems

When Your Eyes Have A Mind Of Their Own You move your eyes more than your heart beats. Vision problems often are one of the mysterious, unexplained symptoms people are plagued with long before their doctor knows what is wrong. While not as frequent as sensorineural hearing loss or balance issues a large percentage will suffer from some vision disturbance. Anisocoria, diplopia, nystagmus, dry eyes, or phantom images in your peripheral vision should all sound an alarm. An experienced ophthalmologist will recognize you may be exhibiting an early symptom of a neurodegenerative disorder and suggest neurology consults. Superficial Siderosis patients may have at least one of these symptoms or they can be an overachiever like Gary. At one time he was experiencing every vision problem we just listed. Years earlier Gary’s optometrist had diagnosed early dry macular degeneration in one eye so he always has regular screenings. I see an ophthalmologist, so I mentioned his vision problems during my appointment. In the beginning First were his complaints of double vision and problems with depth perception. He would see things out of the side of his eye, moving or stationary, that wasn’t there. Driving our backroad after an errand Gary was…

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What’s Your Fall Risk?

ataxia gait balance falls

If you’re living with a gait and balance impairment, this is a familiar scenario. You’re innocently walking, minding your own business, and out of nowhere an angry rogue floor knocks you down. No reason, just walking, then BOOM,  down you go. Laughing about a rogue surface helps lighten an embarrassing situation, but mobility problems can impair your ability to exercise, put you at risk for sprains, bruises or worst case, breaking a bone. Gary’s gait and balance have slowly been declining. His balance is not as bad as his gait on flat surfaces, but if he’s on uneven ground or attacked by an angry floor its impossible to stop a fall. His neurologist felt it was important he start a physical therapy program to maintain muscle strength. His PCP thought it might be time to transition from a cane to a walker. Cerebellar degeneration or atrophy is often the underlying cause of cerebellar ataxia. The cerebellum plays a significant role in coordinating your fine motor function, gait, balance, vision, and swallowing. Cerebellar ataxia will also cause fatigue, affect your executive function, personality, mood, and increase your risk of depression. Yes, There Will Be A Test We see many rotating triage nurses monthly, and they’re required…

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The Danger Of Dysphagia

dysphagia danger

  Most of us never consider the physical mechanics involved with eating or drinking. Open, chew, swallow, repeat. It turns out swallowing is a complicated process which demands a perfectly coordinated effort between your brain, nerves and muscle system (If you have superficial siderosis your inner alarm bell should be blasting). The term Dysphagia covers all swallowing problems but includes two groups. The first type involves a physical or structural problem in your body which impairs movement. The second type, which affects those with neurodegeneration, stem from issues with your neural and motor control center. Malfunctioning nerves responsible for the progressive worsening of dysphagia present a genuine danger to your well being. Staying Aware Gary paid a visit to the speech-swallow clinic during our last trip to Little Rock for a Fiberoptic Endoscopic Evaluation of Swallowing (FEES). He occasionally has episodes of coughing or choking with both liquids and solids, a 15-year history of GERD, suffers annual bouts of pneumonia, and one episode of pleurisy with pulmonary infiltrates. Given his diagnosis of superficial siderosis his neurology team felt it was time to get a baseline test so the speech-language pathology clinic could follow his case in the event symptoms progress.…

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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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Taming Chronic Headache Pain

Managing Chronic Headache Pain

Taming Chronic 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 pain sufferer will understand the long and tearful journey. Imagine the pain of a migraine. Now imagine enduring it for 76 unending days. Light, sound, and movement become the enemy. It lasted for a glorious few hours. A small twinge has returned to the base of the skull area, but Gary says it’s so light now (He describes it as a one on the pain scale) he would be ecstatic even if this is as good as it ever gets.  Living With Daily Pain Gary has lived with pain for years. His daily headache level hovered around a three. Seven days a week. He learned to work and live with a chronic headache for years. His original neurosurgeon explained the pain was caused by a pressure change as spinal fluid moved in and out of the pseudomeningocele created when he removed his tumor from the C-2/C-3 area of his spine. Fixing it would be more dangerous than living with the pain. Come back…

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Vitamin D : Feed Your Brain

Vitamin D for brain function

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 function. Patients are also seen to underperform on one or more cognitive function tests and have a higher diagnosis rate of mild cognitive impairment (MCI) or early dementia A blood test now gives your health professional a simple yet reliable tool to identify at-risk patients. A vitamin D deficiency can be corrected if found early, with a good chance progression from MCI to dementia will be slowed or avoided. Natures Vitamin Store The dangers of sun exposure and skin cancer have us all aware of the importance of regularly wearing sunscreen. What no one told us is while we practice good skin health we are also blocking our prime source of vitamin D. If you mix in low absorption from diet sources with seasonal or geographical limitations to sunlight then you may be headed for vitamin D deficiency. Vitamin D2 or…

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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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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 nurse are all in Louisiana. Gary travels to Arkansas for his electrophysiology cardiologist, neuropsychologist, and neurology. We may be living a Willie Nelson song, but you can’t say the VA is not thorough.We went to neurology hoping there would be some headway towards relief for Gary’s headache pain. He never sees the same resident or neurologist, so we are in constant new patient mode.   The VA does excel in keeping detailed notes from every visit, so it’s easy to tell if the resident of the day has done their homework. Gary was prescribed Divalproex five months ago for headache pain. He takes 500 mg nightly at bedtime. The medication has not been successful in stopping the pain but what it has accomplished is reducing the duration of the excruciating headaches.   Five months ago his most severe headaches would last…

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Dialing Down The Pain

Superficial Siderosis 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 force, then you can throw out that scale. Thankfully there are ways to ease some of the body ache and joint pain. Doctors frown upon taking acetaminophen in truckload quantities. Floating in a haze of prescription painkillers is an option, but Gary already takes 199 pills a week. ONE HUNDRED AND NINETY-NINE PILLS. It’s understandable why we try to find him relief using alternative methods. I make Arnica infused olive oil in large batches. I tried arnica first when I hurt a flexor muscle running. (Lesson- stretch, stretch, stretch). You can buy arnica off the shelf in a variety of forms, cream, balm or oil. I tried cream but found the oil-based formula worked the best. Gary was still working back then, but I was sure it could help him too.   We started by rubbing just the sorest spots on…

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Thread of Depression

livingwithss logo

  Have you ever wondered which SS symptom is the most commonly shared and often the most incapacitating? Sensorineural Hearing Loss, Ataxia, and Myelopathy are all horrible. Statistically, 50% of SS patients will have to cope with at least one of the big three if not more. It may surprise you to the most common clinical symptom Superficial Siderosis patients suffer from is depression. Not everyone falls head first into a pit of despair, but the battle for your health wears down even the most optimistic person.  As your disability progresses stressors take over; slowly your quality of life begins to change. Conversations become impossible to follow and going to work a nightmare. Diplopia or nystagmus robs you of your ability to drive. The bonus, if you live in a rural area without access to public transportation, say goodbye to your job and your independence. If you’re one of the lucky few to develop anosmia enjoying your favorite foods is now a memory. Stress And Depression Chronic stress can naturally evolve into depression, but there is also evidence of a biological connection. Screening  superficial siderosis patients for depression needs to be a regular part of their plan of care. Loss of…

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