It was RUOK day, but I was not OK. Yesterday was RUOK day, but I wasn’t. If I had been asked, I would have fallen to pieces. I did, anyway. On Tuesday, I had to have my last beloved horse… Read More... "It’s OK not to be OK"
The Daily Frustrations of Superficial Siderosis
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"
Running on Empty
Superficial siderosis can be excruciatingly draining on everyone it touches. Sometimes it feels like we’re running on empty. It’s been a while since I’ve shared what’s been going on with Gary. Our living with superficial siderosis. I’ve been reluctant to… Read More... "Running on Empty"
U.K. Neurological Alliances Unite
‘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"
Community Forum Launches
Welcome to the Superficial Siderosis Discussion Boards While the popularity of social media has shown us a way to connect globally with those diagnosed with superficial siderosis, you might be surprised how many SS patients do not have a Facebook… Read More... "Community Forum Launches"
Wellbeing Therapy
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"
Is Digital Subtraction Myelography the Answer?
Finding Your Needle Leak in the Haystack While a traditional MRI may show the location of a pseudomeningocele, a Dynamic CT myelogram remains the suggested method to locate a suspected active bleed site or a dural defect in cases of… Read More... "Is Digital Subtraction Myelography the Answer?"
Cochlear Implant Assessment Day
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"
Preparing for a Medical Appointment
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"
Reclaiming Your Independence, A Guide to Managing Hearing Loss
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... "Reclaiming Your Independence, A Guide to Managing Hearing Loss"
Improving Your Fitness
Specially written for LivingWithSS.comRollene Janelle, Guest Author Superficial siderosis (SS) is considered a rare neurodegenerative condition. The prevalence of superficial siderosis is estimated to be one in one million individuals, with an estimated 200 diagnoses in the US for 2020.… Read More... "Improving Your Fitness"
UCL Presents A Virtual Live Panel Event
Living with superficial siderosis – the patient’s journey Infratentorial superficial siderosis (iSS) is more commonly known as superficial siderosis of the central nervous system. It is a rare but sometimes disabling neurological condition that often affects hearing, balance, and mobility.… Read More... "UCL Presents A Virtual Live Panel Event"
The Cochlear Implant Experience
Is A Cochlear Implant Right For You? Hearing loss affects 95% of superficial siderosis patients. Specialized hearing aids designed to help word recognition in bilateral sensorineural hearing loss work very well for most patients in the early stages. Unfortunately, many… Read More... "The Cochlear Implant Experience"
The Road To Neurosurgery
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"
Exercises for Balance and Mobility
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"
Should You Visit A Neuropsychologist?
Changes Your brain is a complex system that controls your body, guides your thinking, and filters emotional responses. Because infratentorial superficial siderosis (iSS) causes progressive neural dysfunction, it’s natural to be concerned about how a person’s thoughts, feelings, and cognitive… Read More... "Should You Visit A Neuropsychologist?"