Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. In 2019, Livingwithss.com became a partner in the Superficial Siderosis Research Alliance. Together our alliance has expanded into research, advocacy, and patient education. Rori Daniel, Editor livingwithss.com,

Memory
Rori DanielOctober 7, 2021
1 39
Should You Visit A Neuropsychologist?
Changes Your brain is a complex system that controls your body, guides your thinking, and filters emotional responses. Because infratentorial…
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Education
Rori DanielSeptember 21, 2021
0 38
Tips For Improved Patient-Physician Communication
Patient to Physician Communication a two-way street Quite often, patients with a rare condition experience a variety of complex symptoms.…
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Mobility and Balance
Rori DanielSeptember 12, 2021
1 50
What Is Your Fall Risk?
The Dangers Of Mobility And Balance Impairment If you’re living with mobility or balance problems, this is a familiar story.…
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Body Pain
Rori DanielSeptember 6, 2021
1 46
Managing Neuropathy Pain
Managing Neuropathy Pain Typically, a healthy nerve will only send a signal when it is stimulated, e.g., a nerve in…
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Body Pain
Rori DanielSeptember 5, 2021
2 42
Dialing Down The Pain
Dialing Down the Body Pain of Superficial Siderosis Gary always hurts It’s a fact-of-life he can’t run from; from his…
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Best Life
Rori DanielSeptember 2, 2021
0 240
Finding The Right Healthy Diet
Living Your Best Life with Superficial Siderosis Our readers living with Superficial siderosis should be aware that living your best…
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Memory
Rori DanielAugust 25, 2021
4 36
Feed Your Brain Checking Vitamin D Levels
Protecting Cognition and Memory One detail Gary’s neuropsychologist brought up was his low vitamin D level. While it may be…
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Chelation Therapy
Rori DanielAugust 22, 2021
0 74
Follow these Seven Steps To Begin Your Chelation Experience
Chelation Therapy For Superficial Siderosis In cases of superficial siderosis, attempting to remove the hemosiderin deposits with the prescription chelator…
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Surgery
Rori DanielJune 13, 2021
0 29
The Hazard of Blood Thinners
The Anticoagulant Effect on Active Bleeds Suppose you have an identified or suspected active bleed. In that case, your doctors…
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Treatment Journey
Rori DanielMarch 23, 2021
4 32
The Long Journey Here | Neurosurgery
Finding care for superficial siderosis patients moves in slow motion—the time spent searching for a diagnosis—next, searching for information. In…
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Hearing
Rori DanielMarch 17, 2021
0 32
Will Neglecting Your Hearing Loss Really Hurt Your Cognitive Ability?
Hearing loss is now one of the leading causes of disability worldwide, affecting more than six percent of the population.…
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Education
Rori DanielJanuary 10, 2021
0 0
A Sneak Peek Into The COVID-19 Immunization Journey
Trusting Science It’s natural to be reluctant to roll up your sleeve for something as new as the coronavirus vaccine.…
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Research
Rori DanielNovember 21, 2020
0 35
Is Neuroprotection The Answer?
Can The Progression Of Superficial Siderosis Be Slowed? The holy grail of any rare disorder is discovering the cure. With…
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Chelation Therapy
Rori DanielSeptember 30, 2020
2 35
Generic Chelation Medication Set To Launch
Taro Launches Specialty Generic Deferiprone Tablets, 500mg in the U.S. Taro Pharmaceutical Industries Ltd. announced the launch of a new…
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Personal Stories
Rori DanielSeptember 25, 2020
0 37
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…
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Personality Change
Rori DanielJune 30, 2020
1 45
Changes
We should take a moment to discuss the elephant in the room; the cognitive, emotional, and mood changes that may…
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