A Day In My Life

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My Life With Superficial Siderosis In 2016 I was diagnosed with Superficial Siderosis, a rare degenerative neurological condition which is caused by bleeding into the cerebrospinal fluid over a sustained period of time. I had a brain tumour removed from the back of my head in 1998 when I was eight years old; this is believed to be the cause of my Superficial Siderosis. The blood which leaks into the cerebrospinal fluid eventually overwhelms the body’s capability to remove it completely, leaving iron deposits on the surface of the brain and spine. The iron is toxic to the nerves of the central nervous system (CNS) and causes all sorts of mostly irreversible, damage. In 2018 I underwent an operation to seal the back of my head. It appears to have stopped the leakage of blood into my cerebrospinal fluid. The issue I have now, like most people with Superficial Siderosis,

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Six Steps To Becoming A Better Friend

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We all learned how to be a friend early on but for those of us who know someone fighting a rare disease or chronic illness, it takes some understanding along with a little effort to become a better friend. The challenges faced by the chronically ill are a daily part of life. You may know what you need but the same can’t always be said of your friends or acquaintances. Ask Questions Engaging in a conversation with someone who has a rare disease or chronic condition requires particular skills. It helps if, in the beginning, you allow them to control the flow of conversation. Take a moment to think about your questions. How are you? It’s often the first thing people throw out in a passing conversation. It’s an easy question, but subconsciously it sends the message: I know you’re ill, but I don’t want to hear all the gory details. The

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Hearing Loss And The Movies

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Technology has made settling in on the couch to watch a good movie inviting once again for those with hearing loss. But honestly, some films are just meant to be enjoyed on the big screen. Gary’s hearing loss continues to worsen. He no longer understands the dialog on television without closed-captioning enabled. Background noises, the music or the tone of an actor’s voice is a big muddle. We owned a restaurant for ten years. The only days we closed for many years were Thanksgiving, Christmas Eve and Christmas. Christmas Eve was spent shopping. When Christmas day arrived we were always exhausted so we began a family tradition. Chinese food for lunch and going to the movies. A day-long film festival. The tradition continued long after the restaurant became a memory. A Downhill Slide When Gary first began wearing hearing aids, sounds were clear and conversation enjoyable. It went downhill after

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