Rhys Holmes is a former musician, data analyst, shop assistant and childhood footballer. In his spare time, he enjoys researching Superficial Siderosis, writing, and watching his favorite football team Liverpool FC. Follow Rhys on Twitter @RhysHolmes

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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How To Block The Agony Of Brain Zaps

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The Slow Movement of Pandemic Care Having a rare condition can make it hard to get information as it is, but during the Covid-19 pandemic it has stepped up a notch or two. Usually, I contact my consultant via email to arrange the care and appointments for my superficial siderosis, but with everything on hold at the moment it makes it that much harder. Prior to the Covid-19 pandemic, it would take a few weeks before I’d hear anything about my next appointment, test, or admission, but with the shuffling around of hospitals to cater for social distancing and hygiene regulations, things are now a lot worse. Another Expert My neurosurgeon referred me to his colleague at another NHS health board to see if he could give any further insight into the issues I was having with the pressure in my head. Thankfully, I’m now at some sort of stability

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After Diagnosis

Fours Years On To say it has been a rollercoaster of events would be an understatement. With twists and turns coming so often, I have finally found a bit of stability and haven’t had a hospital admission in quite some time. However, the everyday battle against Superficial Siderosis symptoms continues, some days are easier than others, but when it’s a bad day, it can be an awfully bad day. On the plus side, I’ve found many ways to cope; keeping active and occupied takes my mind off the symptoms until they get so bad that I can’t ignore them. Currently, I find fatigue one of the biggest issues. I could be having the best day, and then suddenly, a wave of tiredness hits me. It can become quite frustrating when I’m in the middle of doing something and have to stop and have a rest or sleep to regenerate my

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The Painful Farewell To The Sounds Of Life

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The Progression of Hearing Loss in Superficial Siderosis Hearing loss is one of the most common symptoms of Superficial Siderosis. For me, I’d say it was the first symptom I noticed; it wasn’t until five years after the hearing loss began that I had my Superficial Siderosis diagnosis.  How it Began  In my previous blogs, you might have read that I was a musician, and around 2011 I began struggling to hear at band practice. I was always very conscious of my hearing and wore earplugs to all the concerts I attended as well as our daily practice. My hearing loss started as a high frequency single pitched tinnitus. The tinnitus just didn’t seem to settle, although I did get the odd moment of quiet here and there. The next thing I noticed was that I was struggling to hear pitch correctly, my guitar always sounded like it was slightly

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The Struggle Of Dual Neurological Conditions

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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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Retraining The Brain

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Neuro physiotherapy Around August 2015, I noticed my balance was starting to deteriorate. Since then, it has gradually gotten worse, and at times my legs become so stiff that I struggle to walk. I decided to invest in a wheelchair as I’m unable to determine how long I can stay on my feet. My legs can sometimes violently shake, which causes me to fall over. Now that some of my other neurological issues have stabilised, I thought it would be an excellent time to work on my mobility. I moved to a new house just over a year ago but had no idea that there was a neurorehabilitation centre a few streets up. My local politician tweeted about the paracycling group at the neurorehabilitation centre, which is what brought it to my attention. After having a look at the website which shows they deal with neurological conditions such as Parkinson’s

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The Effect of a Rare Disease on Mental Health

Superficial Siderosis 2015-2016 Getting a diagnosis was the first step. After about a year of health deterioration, multiple hospital admissions and tests, I was physically and mentally exhausted. I missed so much time at work and was really struggling to sleep at night due to the endless symptoms. The anxiety was becoming a huge issue for me. What will happen next? Can things get better? I had been in generally good health for the past few years, so this was all kind of new to me. Having recently started a new job which I was still trying to get to grips with, my health plummeted. Firstly, my hearing suddenly went in my right ear and had a massive impact on my social life as I was a guitarist in a rock band. Losing a hobby and passion was one thing. Still, the fact it had happened only a few months

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Finding A New Purpose

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Losing the ability to carry on with something your life revolved around is extremely tough to take, as well as being depressive. I have always been a huge Liverpool FC fan, and that drove my passion for football. When I was growing up, I was a keen footballer (soccer player). I played for my local team, Newport Schools AFC, Newport Soccer School of Excellence. I also attended the Cardiff City Soccer School of Excellence.   When I was 8 years old, complications followed the removal of a brain tumour in 1998. I needed a shunt (a device that drains excess brain fluid from the head into a cavity in the abdomen area) inserted into my head. This relieved the raised pressure that had been causing me to suffer from episodes of vomiting, dizziness, blurred vision, and extreme lethargy. The end of 2002, after months off school due to illness because of

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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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