Vestibular therapy exercises are designed to improve the vestibular system’s function by challenging and retraining the brain to process information from the inner ear. Read More... "Retrain Your Brain with Vestibular Therapy"
What is RBD REM Sleep Behavior Disorder (RBD) is a severe secondary condition to neurological disorders in which the pontine areas of the brain controlling REM sleep no longer work correctly. Confirming the disorder requires observing repeated speaking episodes combined… Read More... "REM Sleep Behavior Disorder"
Overview 2022 has been a busy year on the awareness raising front, which is a brilliant feat for such a rare disease. With more awareness, there will likely be more patients diagnosed with superficial siderosis. My neurologist told me that… Read More... "What a Year! 2022 Summary"
From Tweetup to Meetup It had been over three years since I’d first met my friend Deb, who also has superficial siderosis. We met on Twitter in 2018 when we were both tweeting about superficial siderosis. Deb, her mum, and… Read More... "A Rare Reunion"
Nowhere to Go When I was first diagnosed with superficial siderosis (SS), there wasn’t much information around. It was a case of rummaging through Google to find things of relevance and chatting to other patients who had been diagnosed with… Read More... "What the SSRA Means to Me"
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"
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"
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"
‘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"
Overview 2022 has been a busy year on the awareness raising front, which is a brilliant feat for such a rare disease. With more awareness, there will likely be more patients diagnosed with superficial siderosis. My neurologist told me that… Read More... "What a Year! 2022 Summary"
From Tweetup to Meetup It had been over three years since I’d first met my friend Deb, who also has superficial siderosis. We met on Twitter in 2018 when we were both tweeting about superficial siderosis. Deb, her mum, and… Read More... "A Rare Reunion"
Nowhere to Go When I was first diagnosed with superficial siderosis (SS), there wasn’t much information around. It was a case of rummaging through Google to find things of relevance and chatting to other patients who had been diagnosed with… Read More... "What the SSRA Means to Me"
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"
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"
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"
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"
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"