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…

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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 understand the long and tearful journey. Imagine the pain of a migraine. Now…

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Time to Rare Up

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…

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The Frustration Of Hearing Aid Down

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…

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The Struggle With High Cost Medications

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…

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Becoming A Better Friend To The Chronically Ill

If you are fighting a battle with a rare disease or are chronically ill, you are familiar with the challenges you face daily. Sometimes the same can’t be said of your friends, family or acquaintances. This blog post is for everyone who knows someone fighting a battle, not just with…

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Neurology Roadtrip

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…

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The Results Are In

“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…

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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…

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Five-Two Diet Plan Update

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 ferritin level. His body seems to have leveled out naturally and hovers in a channel now.

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Following The Low Road: Low Iron Diet

UPDATE DECEMBER 2017: Gary has been following this diet plan for 30 months now. His serum ferritin level now stays between 11.2 and 9.9. His lowest level recorded was 8.8. He cycled off his Ferriprox for a week, and we iron loaded his diet until he was back in the mid 9 level.