Thread of Depression

Depression

Have you ever wondered which SS symptom is the most commonly shared and often the most incapacitating? Sensorineural Hearing Loss, Ataxia, and Myelopathy are all horrible. Statistically, 50% of SS patients will have to cope with at least one of the big three if not more.   It may surprise you to find out the most common clinical symptom Superficial Siderosis patients will suffer from is depression. Not everyone falls head first into a pit of despair, but the battle for your health wears down even the most optimistic person. As your disability progresses stressors take over; Slowly your quality…

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Is My Ferriprox Working?

MRI Superficial Siderosis

The Big Question   First of all, we know the mind of Superficial Siderosis patients is full of questions. But if you’re one of the few who uses Deferiprone you want to know is my Ferriprox working? The original Pilot Saftey Trial of Deferiprone by Dr. Levy and Dr. Linas offered the first evidence chelation using Ferriprox could be successful without severe side effects. A longer term observational study began March 2012. Clinicaltrials.gov: Phase IV Observational Study of Deferiprone (Ferriprox®) in the Treatment of Superficial Siderosis. The estimated completion date is this month (Dec. 2017) with data collection ended in March 2017.…

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Staying Woke:

Superficial Siderosis Awareness

Get Woke   I like listening (ok, eavesdropping) to my granddaughters when they find time to get together. Our grandkids ages range from a first-year college student, high school, elementary to toddler. Conversations can be eye-opening. You learn a lot: who’s salty, why something’s lit, and being woke. If you follow social media, you see it everywhere. It stays with me, this word. Woke. People are willing to be engaged.   It’s Up To Us   There’s a significant message in “being woke” for the Superficial Siderosis fam. We are obligated to spread awareness. Whether for ourselves or an advocate…

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Hearing Loss And The Movies

hearing loss accommodations movie captions

Adapting To A Life With Hearing Loss   Technology has made settling in on the couch watching a good movie inviting 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 worsen. He no longer understands the dialog on television without closed-captioning enabled. Background noises, the music or the tone of an actors voice is a muddle. We owned a restaurant for ten years. The only days we closed for many years were Thanksgiving, Christmas Eve and Christmas. Christmas Eve was spent shopping. When Christmas arrived…

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The Neuropathy Chronicles 2.0

Peripheral Neuropathy Symptoms   Hello Pain, My Old Friend You might remember from one of our earlier posts, The Neuropathy Chronicles, how we managed to tame the burning foot pain that is so familiar to Superficial Siderosis patients. Two years later TCM is still the winner. We saw for ourselves how true this was during early spring when the electrical system of Gary’s heart (more on this later) decided to join the party. Complications led to pulmonary embolisms in five lobes of his lungs and long-term coagulation therapy. The TCM herbal blend Gary uses stumped the VA pharmacists. He cycled…

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Railroad Spike: Chronic Headache Pain

chronic headache pain

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 head. The not so good days it feels like a hot railroad spike through the base of your skull sprinting up to your eyes. Pain that radiates into every part of your head creating excruciating agony.   It’s A Headache Not A Marathon Gary has always tried to control his pain with over-the-counter pain medications, sitting quietly with his eyes…

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