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"
Category: Personal Stories
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"
Just Go Home And Live With It
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,… Read More... "Just Go Home And Live With It"
Julianne’s Story
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… Read More... "Julianne’s Story"
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… Read More... "Remembering What it is Like to Get Out"
Research Day
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"
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… Read More... "My Last Music Festival"
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… Read More... "The Struggle Of Dual Neurological Conditions"
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… Read More... "Facing Down Coronavirus"
Living In Upside Down World
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. Read More... "Living In Upside Down World"
A Day In My Life
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… Read More... "A Day In My Life"
Inescapable Realities
Superficial siderosis progresses slowly during the early years. This may be an unintended blessing considering the years many will spend searching for a diagnosis. Gary’s story timeline has always remained closely aligned with physician estimates. The inescapable reality we must… Read More... "Inescapable Realities"
Meet Fiona Parkinson
Fiona Parkinson has a busy life. This active 45-year-old Australian juggles her duties of tending her family’s small hobby farm, animal menagerie, preserving award-winning homegrown food, and mothering three handsome young men. Fiona is also battling Superficial Siderosis. I first… Read More... "Meet Fiona Parkinson"
Camping with a Chronic Illness
No, I’m sorry we can’t. It’s become our standard answer to most invitations now. Our niece sent a text last month. Hey, we’re going skydiving do you guys want to come? I was so shocked I asked if she meant… Read More... "Camping with a Chronic Illness"
Meet Robert Cameron
Robert Cameron has seen the world. Graduating with a degree in Marine Transportation from the United States Merchant Marine Academy, he rose through the ranks and took command of his first vessel in 1980. A voyage that would continue for… Read More... "Meet Robert Cameron"