Health Magazine

Inescapable Realities

Posted on the 12 December 2019 by Livingwithss @livingwithSS
Inescapable Realities

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 now face is this disease has entered an accelerated stage. I need to be clear. It's not the superficial siderosis accelerating; it's the overwhelming effect the symptoms of this disease inflict on Gary's body. The changes are pronounced and palpable.

Inescapable RealitiesToys for Tots Run
December 2014 Inescapable RealitiesMay 2014

Visible and Invisible


Our life revolves around doctor appointments. Ten trips spread over three states in four weeks. Gary receives very attentive care but I often wish there was something doctors could offer him besides platitudes and bandaids. The symptoms are winning the battle.

Gary suffers falls almost every day. We had a physical therapist coming to the house twice weekly for two months; by his eight-week evaluation they threw in the towel. The evaluators' report stated his neurological problems were beyond their ability to help. I've been given the contact information of a PT program that was really helpful to our closest superficial siderosis neighbor but a three-hour drive each way makes it impractical.

His loss of smell combined with hearing loss and short-term memory problems has led to new concerns. Gary wakes at 5:00 am during the week to take his medication, makes coffee, and brings me a cup while I work on my project of the day. He lays back down and sleeps until breakfast at 7:00 am. A few weeks ago I went into the kitchen to grab a refill when I was hit by the unmistakable smell of gas.

Inescapable Realities
May 2017

Gary had decided to put a large pot of water on to simmer but his hearing loss and anosmia made it impossible for him to realize the igniter had not lit the burner. If I had not gone in for more coffee he would have never known the kitchen was full of gas. When I realized what had happened I walked to the stove and turned off the burner. That simple turn of the knob caused the igniter to spark and shot a heart-stopping ball of fire straight up. Imagine if he had gone back in at 7:00 to cook breakfast.

Positives vs Negatives

A failed cardiac ablation, five pulmonary embolisms, two DVTs' and subsequent pacemaker have Gary on a lifetime regimen of blood thinner. His chelator is being worked overtime which might explain why some symptoms are now going into overdrive.

Inescapable Realities
December 2019

We've been fighting for his active bleed to be repaired since he was diagnosed. Gary returns to his neurosurgeon early next week hoping for the one procedure we want more than any. Earlier this summer the case was referred to an interventional neuroradiology specialist in hopes a less invasive procedure could be performed but it wasn't accepted.

Disappointment doesn't help depression.

As bleak as this tale may sound we cling to the positives. After five years of chelation therapy, his headaches are under control and his hearing has remained at a steady level for well over a year. Our best hope is new research will discover the key to kicking the chelation process into high gear. While his physical condition is distressing now, without progress, the future may be worse.


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