Making Plans Living with superficial siderosis is very frustrating, to say the least; it’s hard to plan anything due to the spontaneity of the symptoms, which regularly leads to a complete change in routine, where I find myself juggling the… Read More... "The Daily Frustrations of Superficial Siderosis"
Author: Rhys Holmes
‘Together for the 1 in 6’ Each of the four countries in the U.K. has its own Neurological Alliance, and a co-production (co-pro) group was established involving neurological patients from each country to get a range of feedback from different… Read More... "U.K. Neurological Alliances Unite"
Our readers living with Superficial siderosis should be aware that living your best life means you need to look beyond simply treating the symptoms. Both your physical and mental health will benefit. By moving towards a healthier diet, exercising to… Read More... "Wellbeing Therapy"
The Cochlear Implant Question It’s back to London once again, this time for a full day of tests to see if I’m a suitable candidate to receive a cochlear implant, which is a device that can potentially restore some hearing… Read More... "Cochlear Implant Assessment Day"
It’s always a good idea to prepare for your appointment, so you can get all the information you need out of it. Leaving with unanswered questions can cause anxiety and can leave you chasing things up when you’ve had the… Read More... "Preparing for a Medical Appointment"
The Neurosurgery Repair Process In this piece, I’m going to share my personal experience of when I was admitted for neurosurgery to have a pseudomeningocele repaired, which was at the back of my head. The pseudomeningocele was believed to have… Read More... "The Road To Neurosurgery"
Living Your BEST LIFE with Superficial Siderosis Our readers living with Superficial siderosis should be aware that living your best life means you need to look beyond simply treating the symptoms. Both your physical and mental health will benefit. By… Read More... "Exercises for Balance and Mobility"
Superficial Siderosis and CSF Leak – An Intertwining Complication Superficial siderosis and CSF (cerebrospinal fluid) leak go hand in hand. If blood can infiltrate the CSF, then CSF can leak out as well, which is what it did in my… Read More... "Superficial Siderosis and CSF Leak"
Did they work the first-time round? It had been tough for me to tell if the first course of nerve blockers (Greater Occipital Nerve Block) worked now that a few weeks had gone by. I kept quite an extensive log… Read More... "Knocking Out The Brain Zaps"
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… Read More... "Remembering What it is Like to Get Out"
Waking up for the Big Day I woke up to a bad headache, probably a bit of nerves and excitement about going to the best hearing institution in the United Kingdom. After all, I’m a musician and what’s the fun… Read More... "Research Day"
Arriving at the Hospital The day had finally arrived; it was time to venture to the hospital in Cardiff for my first lumbar puncture in nearly two years. I have had many lumbar punctures since I was 8 years old,… Read More... "Do I Still Have An Active Bleed?"
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… Read More... "My Last Music Festival"
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… Read More... "How To Block The Agony Of Brain Zaps"
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… Read More... "After Diagnosis"
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… Read More... "The Painful Farewell To The Sounds Of Life"