Quarterly Neurology Follow-Up

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Quarterly Neurology Follow-Up The New Normal By the time we went to our quarterly neurology follow-up we had a pretty good list of questions. The cholesterol medication was a big one. What kinds of exercises could we safely add to the walking? Did we need to see a Neuroopthamoligist instead of our ophthalmologist? What alternatives, besides prescription medications, were…

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Superficial Siderosis Webinar Transcript

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Superficial Siderosis Webinar Transcript Presented by Dr. Michael Levy   To view the recorded webinar you may watch here Download a copy of the transcript and slides  here Click on the individual slide to view larger   Hi, my name is Dr. Michael Levy. I’m an assistant professor at Johns Hopkins University in Baltimore and a neurologist. I see…

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Superficial Siderosis Webinar

What causes Superficial Siderosis

Superficial Siderosis Webinar In this webinar, Dr. Michael Levy, The Johns Hopkins Hospital, Department of Neurology explains just precisely what Superficial Siderosis is. Listen to an explanation of the known causes, how your doctor will make the diagnoses and what your treatment options are in this easy to understand 30-minute presentation. To view a written transcript of this webinar…

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Rethinking Cholesterol Medication

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Rethinking Statin Use   Are you a long-term user of popular statin drugs on the market? Studies are convincing it’s time to rethink cholesterol medication use if you’re in a high-risk, neurodegenerative patient group. If you are already fighting nerve degeneration, there is evidence your cholesterol medication may be contributing to peripheral nervous system damage. 25% of the adult…

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Balance Problems

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Can Physical Therapy Help Balance Problems? We’re one year into chelation therapy now with another two years left to go if we’re lucky. The possibility is very real Gary’s cerebellar degeneration will continue. We stumbled on an intriguing blog while searching for physical therapies we could add to our exercise routine that might help with the balance and gait issues….

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Managing Neuropathic Pain

Hello, Switchboard I’ve Been Disconnected   One of the better explanations I found during our search for ways to manage neuropathic pain associated with Superficial Siderosis was a quote from Dr. Corey W. Hunter¹. “Typically, a healthy nerve will only send a signal when it is stimulated, e.g., a nerve in the hand that senses temperature will stay quiet…

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Hemosiderin in the Cerebellum

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Putting A Face On The Enemy We’ve all read the descriptions of how hemosiderin deposits (Iron Salts) form. Do you sit looking at the MRI scan results wondering just where we are supposed to be looking? Nothing explains it better than a picture. When you look closely at this photo of hemosiderin in the cerebellum, you can see how thick the…

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Cerebellar Ataxia and Ayurvedic Therapy Possibilities

Exploring Alternative Medicine   Ataxia was once referred to as the “Drunken Sailor” syndrome a few hundred years ago. The gait problems that arrive from superficial siderosis are just one of many that fall under cerebellar ataxia. We can relate big time. Gait, balance, hand coordination, vision, speech, swallowing, mild cognitive impairment, and fatigue are just a few problems related to cerebellar…

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Navigating The Iron Food Road

Finding The Iron Content Of Everyday Foods   I’ll be honest – this is a tough one – no, you don’t have to follow the 5/2 diet cycle while on Ferriprox. Gary does because we’re trying to get our money’s worth. In March of 2014, when first diagnosed, the radiology report noted there was only “mild associated cerebellar atrophy.”…

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Benefits of Green Tea

  Green tea has enjoyed such a surge in popularity that more than a few people are skeptical. Every healthy living blog touts the benefits of green tea for everything from cardiovascular health, diabetes or weight loss. That will raise an eyebrow or two, but when you do some research, you may find yourself changing your mind. One of…

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Whole New Ballgame: ReSound Linx²

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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…

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The Cart Before the Horse: Stem Cells

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Stem Cell Research and Neurodegenerative Healing   Research takes a very long time with many wrong turns along the way. But if we continue to look for possibilities imagine the reward. One of the more exciting areas is stem cell research and their effect on neurodegeneration. In this Ted Talk video  Dr. Siddharthan Chandran explains how close researchers are to…

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Following The Low Road:Low Iron Diet

Giving Ferriprox A Chance   When we decided to give Ferriprox a chance, we weren’t aware how hard getting your health insurance company to approve a tier 5 drug for off-label use is. Luckily, we have a hematologist experienced in gaining approval for high-level medications for his patients. Five months passed from when Gary was first diagnosed until the first…

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Living On Tilt: Ataxia

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Dealing with ataxia, gait and impaired balance   50% of Superficial Siderosis patients will have to learn to live their lives permanently on tilt. Ataxia related gait and balance issues were a late addition to our list of symptoms, but here they are. In early 2013 random bouts of nausea and vertigo would hit with no warning. Walking would…

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A Very Good Day

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 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…

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Experiencing Food as Texture: Anosmia

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LEARNING TO LOVE THE CRUNCH   None of the symptoms you can have with Superficial Siderosis is a walk in the park, but one of the most gloomy is anosmia. Living with a sense of smell that has been fading over the last ten years was bad enough but now, it’s completely gone. Very handy if you’re asked to…

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Chipping Away: Ferriprox

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Chipping Away: Ferriprox   Starting Down The Chelation Road   It was a big day when the first bottle of Ferriprox arrived at our door. Our hematologist had laid out what would be happening during chelation in some pretty easy to understand terms: “Picture the iron that is covering the areas inside your head as a rust that has…

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The Decision To Choose Chelation Therapy

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The Decision To Choose Chelation Therapy Superficial Siderosis Diagnosis, Chelation Therapy, and Deferiprone Researching on your own can be tricky. Superficial Siderosis is a serious diagnosis and the early research papers we found scared us to death. At first glance, the prognosis is horrendous so when we came across Pilot Safety Trial of Deferiprone in 10 Subjects With Superficial…

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Superficial Siderosis Symptoms

Superficial Siderosis Symptoms List   There are more than 30 recognized clinical Superficial Siderosis symptoms. Sensorineural Hearing Loss, Ataxia, and Myelopathy are considered to be the three classic signs. We have used these as parent categories¹ for ease of sorting our glossary terms into sub-categories. At least one or two of the big three signs will present in more…

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