Education
Information on how you can navigate through treatments, therapies, doctors and life with superficial siderosis
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Do I Still Have An Active Bleed?
Arriving at the Hospital The day had finally arrived; it was time to venture to the hospital in Cardiff for…
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My Last Music Festival
Download Festival Prior to 2017 I was a very outgoing person and had attended Download Festival nearly every year since…
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A Sneak Peek Into The COVID-19 Immunization Journey
Trusting Science It’s natural to be reluctant to roll up your sleeve for something as new as the coronavirus vaccine.…
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The Struggle Of Dual Neurological Conditions
Superficial Siderosis and Hydrocephalus Having superficial siderosis is one thing, but sometimes like me, it’s possible to have other disabling…
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Retraining The Brain
Neuro physiotherapy Around August 2015, I noticed my balance was starting to deteriorate. Since then, it has gradually gotten worse,…
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Living In Upside Down World
I thought we were ready. Very early in March, I had a conversation with two neurologists in Italy. They had…
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A Day In My Life
My Life With Superficial Siderosis Rhys Holmes In 2016 I was diagnosed with Superficial Siderosis, a rare degenerative neurological condition…
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Balancing Act
Some days are better than others but you really start to worry about the future when you hear the unmistakable…
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Inescapable Realities
Superficial siderosis progresses slowly during the early years. This may be an unintended blessing considering the years many will spend…
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Who Doesn’t Love a Freebie?
Everyone loves something free but too often there’s some kind of string attached. The item might be free but the…
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Your Daily Medications
Imagine living a life that revolves around medication. I know many of you can relate. Try keeping track of 200…
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Meet Fiona Parkinson
Fiona Parkinson has a busy life. This active 45-year-old Australian juggles her duties of tending her family’s small hobby farm,…
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Six Steps To Becoming A Better Friend
We all learned how to be a friend early on but for those of us who know someone fighting a rare…
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The Question Of Restless Leg Syndrome
Restless Leg Syndrome (RLS) has become an interesting discussion topic in Superficial Siderosis circles so my question: Is there…
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Camping with a Chronic Illness
No, I’m sorry, we can’t. It’s become our standard answer to most invitations now. Our niece sent a text last…
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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…
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