Author: Rori and Gary

Author Archives: Rori and Gary

Our life after Gary’s diagnosis of superficial siderosis. We share our thoughts on how we deal with the clinical symptoms and life changes that come with a chronic illness.

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…

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Our Superficial Siderosis Community: Meet Robert Cameron

spotlight profile fb

  Robert Cameron has seen the world. Graduating with a degree in Marine Transportation from the United States Merchant Marine Academy he rose through the ranks and took command of his first vessel in 1980. A voyage that would continue for more than 25 years, Captain Robert traveled the world; Australia, New Zealand, South Africa, Japan and the United States making memories for a lifetime. A meningocele was found wrapped around the nerves at the T-4 area of Roberts’ spine. The discovery led to a 12-hour surgery and resulted in an uncontained slow bleed. In 2005, a diagnosis of superficial siderosis changed his course. Retirement finds him splitting his time between Florida, where he is he under the care of Dr. James Meschia, Head of Neurology Jacksonville Mayo Clinic and his summer home on Nantucket island. Opting to give chelation therapy a chance, he feels there has been a slowing…

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The Common Thread Searching For The Unexplained

common thread

Diagnosis of superficial siderosis is rare. It’s so unique in fact if you searched for information on one of the national or international rare disease databases until the last few years it wasn’t listed.  We should be glad so few will face a diagnosis of superficial siderosis, but you can’t help but wonder. Is there a common thread to be found? I find myself thinking about this subject a lot. Dr. Levy has said they don’t know why some people are overwhelmed by the blood infiltration. An unlucky spin of the wheel. We’re not medical professionals but what if we brainstorm a little and toss around a few ideas. First, let’s talk about what we do know. Superficial Siderosis is not hereditary; you aren’t born with it. Superficial Siderosis is not contagious; you can’t spread it or catch it.  Age or gender do not play a significant role in the diagnosis;…

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Exploring Ayurveda For Cerebellar Ataxia And Pain Control

Western medicine is innovative, but if you search through PubMed, you find very few drug trials for degenerative cerebellar ataxia. There is no known cure for ataxia, so our best hope still lies in finding a therapy to ease the symptoms. With all the modern innovations available what if one possible answer lies in an ancient system of holistic healing? Ayurvedic medicine deserves a look. “Ayurveda” comes from the Sanskrit words Ayur (life) and Veda ( knowledge) and is the oldest (5,000-year-old) recorded system of medicine in history. It combines the concept of whole health; lifestyle, exercise, diet along with medicinal herb compounds, some which predate written history. Many traditional therapies are now being studied in a clinical setting using western methods of research, double-blind trials, and research review to prove or disprove their efficacy. The most promising trial we’ve previously highlighted is Degenerative Cerebellar Ataxia After Ayurvedic Therapy. In 2009 a joint study in India was conducted by…

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20 Strength Exercises When You’re Fighting Mobility Problems

bands exercise

  Finding a user-friendly exercise program for patients diagnosed with related ataxia symptoms isn’t easy. For example, Gary is limited to lifting 10lbs so he doesn’t cause fresh bleeding into his CNS. Standing or sitting with free weights is a no-no; even without the lifting limit, you wouldn’t want to be the spotter with his balance problem. Before his nerve block, getting down on the floor to do planks, sit-ups or leg lifts would bring an instant migraine. Exercising was a minefield. Gary’s appointment for his balance and gait evaluation gave us the opportunity to ask the kinesiology department these questions. He needed a low-impact strength program designed so it: Could be done at home Wouldn’t trigger headaches Balance problems wouldn’t interfere Muscle tone could be strengthened or maintained   The physical therapist built a program with ten strength exercises, each set targeting the upper or lower body using resistance…

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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…

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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,…

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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…

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Taming Chronic Headache Pain

Managing 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…

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Vitamin D : Feed Your Brain

Vitamin D for brain function

    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…

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