Some days are better than others but you really start to worry about the future when you hear the unmistakable sound of someone bouncing off the wall and hitting the ground. Gary has been stubbornly trying to continue walking inside… Read More... "Balancing Act"
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"
Everyone loves something free but too often there’s some kind of string attached. The item might be free but the cost of shipping and handling is outrageous, or in claiming the free item you end up in a never-ending membership.… Read More... "Who Doesn’t Love a Freebie?"
Imagine living a life that revolves around medication. I know many of you can relate. Try keeping track of 200 pills a week with nine different daily dosage times. What time is it? Did I take my pills? Did I forget my medicine? What’s next when memory becomes such a problem your reminder strategies begin to fail? Read More... "Your Daily Medications"
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"
We all learned how to be a friend early on but for those of us who know someone fighting a rare disease or chronic illness, it takes some understanding along with a little effort to become a better friend. The challenges… Read More... "Six Steps To Becoming A Better Friend"
Restless Leg Syndrome (RLS) has become an interesting discussion topic in Superficial Siderosis circles so my question: Is there a connection between SS and RLS? Or does the fact RLS affects 8% of the population¹ suggest it’s simple law-of-averages… Read More... "The Question Of Restless Leg Syndrome"
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"
Superficial Siderosis. Subpial Siderosis. Infratentorial Superficial Siderosis. No matter how your doctor officially labels your diagnosis odds are no one has the slightest idea of the battle you are about to face. A rare neurodegenerative condition so uncommon it’s often… Read More... "When you are the RARE in Rare Disease"
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"
Five-Two Plan Some of our earliest blog posts explained Dr. Levy’s suggested medication dosing schedule and diet recommendations. We dubbed this the Five-Two Diet Plan so we would have an easy way to write about it. Two and a half… Read More... "Five-Two Diet Plan Update"
Superficial Siderosis Life Expectancy It’s human nature to wonder How long will I live? When you’ve been diagnosed with a life-changing ultra-rare disorder like superficial siderosis, thoughts like this can consume you. Superficial Siderosis Life Expectancy, four words make it… Read More... "Life Expectancy of Superficial Siderosis Patients"
Life as a germ magnet. A healthy person strolls through daily life never giving a thought to living with a weak immune system. A person with superficial siderosis often finds out the hard way caution should be the word of… Read More... "Life As A Germ Magnet"
Bilateral Sensorineural Hearing Loss Phantom smells and worsening hearing were the first inklings something was wrong. Our first ENT (Ear, Nose & Throat Specialist) decided the smell problems were the result of some past sinus infection. Gary’s hearing loss issues were… Read More... "A Very Good Day"
Superficial Siderosis Symptoms List There are more than 30 recognized clinical Superficial Siderosis symptoms. Sensorineural Hearing Loss, Ataxia, and Myelopathy are considered to be the three classic signs. We have used these as parent categories¹ for ease of sorting… Read More... "Superficial Siderosis Symptoms"