We know most Superficial Siderosis patients are full of questions. If you’re one of the few prescribed the iron chelator, deferiprone, you want to know if chelation is working? The original Pilot Saftey Trial of Deferiprone, M.Levy, and R. Linas, offered… Read More... "Will Superficial Siderosis Chelation Really Work?"
Author: Rori Daniel
Technology has made settling in on the couch to watch a good movie inviting once again for those with hearing loss. But honestly, some films are just meant to be enjoyed on the big screen. Gary’s hearing loss continues to… Read More... "Hearing Loss And The Movies"
The Neuropathy Chronicles 2.0 You may remember from The Neuropathy Chronicles how we managed to tame the burning foot pain that is so familiar to Superficial Siderosis patients. Two years have passed, and TCM is still the winner. We saw… Read More... "The Neuropathy Chronicles 2.0"
Living With Chronic Headache Pain Chronic headache pain has been in our lives for years. Our Superficial Siderosis community has many fellow sufferers. On good days the pain is a dull throb pecking away, neck, eyes, and top of your… Read More... "The Railroad Spike Of Chronic Headache Pain"
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"
Hope We’ve been doing the whirlwind testing tour with Gary’s many specialists these past few weeks. Not only was it time for his quarterly neurology follow-up, but we found ourselves eagerly waiting for his first MRI scan and hearing test… Read More... "A Whirlwind Testing Tour"
The Neuuropathy Chronicles Sharp jolting stabs of burning pain across one or both feet were making it impossible for Gary to sleep. (Earlier, we touched on our search for some relief from peripheral neuropathy in QUARTERLY NEUROLOGY FOLLOW-UP) Gary’s neurologist… Read More... "The Neuropathy Chronicles"
Punching Through the Brain Fog Gary and I had both been suffering a lack of focus. The last few months have not only been busy but very stressful for us. We headed into the summer months, not giving much thought… Read More... "Punching Through the Brain Fog"
Quarterly Neurology Follow-Up The New Normal By the time we went to our quarterly neurology follow-up we had a pretty good list of questions. The cholesterol medication was a big one. What kinds of exercises could we safely add to… Read More... "Quarterly Neurology Follow-Up"
Green tea has enjoyed such a surge in popularity that more than a few people are skeptical. Every healthy living blog touts the benefits of green tea for everything from cardiovascular health, diabetes or weight loss. That will raise… Read More... "Benefits of Green Tea"
The two-week update on the ReSound Linx² hearing aids The question most asked, “Do you still like the new hearing aids?” Short answer, yes. But there are so many features we’ve just barely scratched the surface. Classified as Smart Hearing Aids, they… Read More... "Whole New Ballgame: ReSound Linx²"
Ataxia Issues Gait and Balance 50% of Superficial siderosis patients will learn to live their lives permanently on tilt. Ataxia-related gait and balance issues were a late addition to Gary’s list of symptoms, but here they are. In early 2013… Read More... "Living On Tilt"
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"