Remembering What it is Like to Get Out


Getting Out Again I was really looking forward to meeting my friends for the first time in 14 months; however, it wasn’t without a huge wave of anxiety. After all, I had only been out with them once in about 3 years due to the multiple hospital admissions and symptoms of superficial siderosis. We went for a meal in January 2020, just before the pandemic started and put everyone’s life on hold, but for me, things had been on hold a lot longer. Many thoughts were running through my head, ‘How will I communicate now that I am fully deaf?’ ‘Will I be able to move from A to B without falling?’ ‘What if I see people I haven’t spoken to in a while, and they think I’m being rude because I’m not acknowledging them?’. All these thoughts were looping around in my mind, but it was something I really

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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 I had turned 20. Camping, hiking, and watching my favourite bands play was always so much fun, and I’m so glad I got to experience it all when I did. The excitement of the two-hour drive up to Donington Park in Leicestershire with a car full of camping gear, disposable barbeques, and tinned food, whilst listening to my favourite music, was all part of the excitement. Once the car was parked, it was time for a long trek to one of the campsites. A few miles walk, carrying as much gear as possible to save going back to the car for a second time. It was quite physically demanding, but it was a must-do to get the best camping spot before anyone else. The weather was always awful, and the

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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 neurological conditions as well. In late 2001, three years after the removal of a benign brain tumour, I was diagnosed with Hydrocephalus, which translates from Greek to English as water and head.  Hydrocephalus is a condition usually caused by the obstruction of the flow of CSF within the central nervous system. A ventriculoperitoneal shunt is the most common way to treat this. A VP shunt is a mechanical device that drains excess CSF from the head into an area in the abdomen (the peritoneal), reducing the abnormally raised pressure in the head. A valve on the shunt opens when the pressure gets too high and drains CSF through a plastic tube (catheter) into the peritoneal area to be absorbed. I had a VP shunt fitted to drain excess cerebrospinal fluid

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Facing Down Coronavirus


This has been a banner year for anxiety with the many underlying conditions Superficial Siderosis patients face daily. The lack of early information; how the Coronavirus would affect the S.S. community. These were all added stressors. We made a personal choice early on to take extreme precautions since Gary is such a germ magnet. In March, I attended a virtual rare disease webinar on how at-risk patients should handle a Coronavirus situation in their household if someone were to test positive. We voluntarily went into a self-imposed lockdown bubble. When Your Bubble Breaks Our bubble of isolation burst with our granddaughter’s arrival; Averie moved in with her two-year-old toddler at the end of May. She would begin a new job in a popular high-traffic restaurant when a neighboring State lockdown regulation started to ease. Five days a week, she was exposed to a parade of dining patrons, some of who

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Living In Upside Down World

face mask

I thought we were ready. Very early in March, I had a conversation with two neurologists in Italy. They had both seen patients with Superficial siderosis, so we were making a connection to share information. One of them commented we had no idea of what was heading here to the U.S. I made a mental note to do a little preparation because that’s my nature.

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A Day In My Life

rhys holmes

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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