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… Continue "Exercises for Balance and Mobility"
Patient to Physician Communication a two-way street Quite often, patients with a rare condition experience a variety of complex symptoms. Do not let an appointment with your doctor leave you feeling as confused. Healthcare providers are constantly under pressure to… Continue "Tips For Improved Patient-Physician Communication"
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… Continue "Chair Yoga for Mobility and Balance"
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… Continue "Finding The Right Healthy Diet"
When Neurology Has No Answers Greetings, fellow Superficial Siderosis patients; my name is Bena Travis. I’m a 62-year-old retired florist and wedding planner living in the USA’s beautiful Western Kentucky lakes area. My husband and I live on the lake,… Continue "Just Go Home And Live With It"
Not A Head Cold? My name is Julianne. I am 64 years old and live in Devonport, a city in northern Tasmania. Tasmania is a large island state located 240 km (150 mi) south of the Australian mainland. I was… Continue "Julianne’s Story"
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… Continue "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… Continue "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,… Continue "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… Continue "My Last Music Festival"
Trusting Science It’s natural to be reluctant to roll up your sleeve for something as new as the coronavirus vaccine. For those who also face the dual concern of balancing a rare disorder’s symptoms against contracting a highly contagious virus,… Continue "A Sneak Peek Into The COVID-19 Immunization Journey"
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… Continue "The Struggle Of Dual Neurological Conditions"
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… Continue "Facing Down Coronavirus"
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… Continue "Retraining The Brain"
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. Continue "Living In Upside Down World"
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… Continue "A Day In My Life"