Staying Woke:

Superficial Siderosis Awareness

Get Woke   I like listening (ok, eavesdropping) to my granddaughters when they find time to get together. Our grandkids ages range from a first-year 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. It stays with me, this word. Woke. People are willing to be engaged.   It’s Up To Us   There’s a significant message in “being woke” for the Superficial Siderosis fam. We are obligated to spread awareness. Whether for ourselves or an advocate…

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Railroad Spike: Chronic Headache Pain

chronic headache pain

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 skull sprinting up to your eyes. Pain that radiates into every part of your head creating excruciating agony.   It’s A Headache Not A Marathon Gary has always tried to control his pain with over-the-counter pain medications, sitting quietly with his eyes…

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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,…

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Rethinking Cholesterol Medication

myelin axon nerve cell

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 population in the US, over the age of 45, is now on a prescribed statin. The popularity of cholesterol-lowering medication was rolled out with both an advertising blitz and a push from industry drug reps. Physicians initially thought statin drugs had…

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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® (deferiprone) but personally we are trying to “get our money worth” out of chelation. March of 2014 when the diagnosis was made the report noted there was only “Mild associated cerebellar atrophy”. Working, driving or even walking a straight line were all still possible. Chelation therapy with Ferriprox® was started a year ago in July, and we know that deterioration continues to occur even while you are on the medication. It…

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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…

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