Thread of Depression


Have you ever wondered which is the most frequent and sometimes incapacitating superficial siderosis symptom? Sensorineural hearing loss, ataxia, and myelopathy are all life-changing, but the single most shared symptom members of our superficial siderosis community battle is depression. Not everyone will fall head first into a pit of despair, but the fight for your health wears down even the most optimistic person.

As your physical well-being slips, stressors begin to take over as your quality of life slowly begins to change.  If you’re one of the lucky few to develop anosmia enjoying a great meal is now a memory. Conversations become impossible to follow leaving you to feel isolated. Going to work is a nightmare. Vision problems rob you of your ability to drive. The bonus? If you live in an area without access to public transportation, say goodbye to your independence.

Stress And Depression

Extreme chronic stress is known to evolve into depression, but there is also evidence of a biological connection. Personality and mood disorders will often develop in superficial siderosis patients when cerebellar degeneration is present. New studies have shown the cerebellum plays a critical role in mood function.

Loss of concentration, sleep disturbance, cognitive and behavior changes can either trigger depression or be brought on by depression. Enhanced physical pain or fatigue can be a real consequence of a depressive state. Friends or family often dismiss feelings of sadness as run-of-the-mill, so they miss the signs of genuine distress.

Screening superficial siderosis patients for depression needs to become a regular part of your plan of care.

When Robin Willams took his life, he was not aware he had Diffuse Lewy Body Dementia. His widow wrote an essay in 2016 for a neurological journal titled “The terrorist inside my husband’s brain.” She describes his struggle in vivid detail; he was “growing weary.” That is a perfect description for all of us who are touched by superficial siderosis.

The years have been very hard on Gary. He had to give up his job. His doctors stopped his driving. A sister lost her battle with cancer. Stress and anxiety continue to build. His physical deterioration has progressed into constant pain, extreme headaches, hearing loss and feelings of isolation. But the most significant noticeable and frightening change was his short-term memory. I could feel the depression taking hold. It continued to worry me for months. We were sitting in the kitchen just before Christmas in 2016 when the conversation turned to Robin Williams. Gary said, in a moment of honesty, he understood what drove Robin to commit suicide.

Taking Control

Gary entered the Veterans Administration healthcare system in January of 2017. I brought up our conversation from December in his interview. Depression and suicide are two big trigger words within the VA. Gary explained he now understood what would drive someone to take their life. During his appointment with his neuropsychologist, Dr. Fazio recommended he begin a mental healthcare treatment plan. Gary has chosen to decline therapy. I was given instructions for emergency intervention if it ever becomes necessary.


Superficial Siderosis is a life-challenging event. Personality or mood changes are frightening for everyone especially if the cause is organic. Treatment can help ease depression, so it’s crucial caregivers recognize when it’s time to intervene. It’s important to keep the conversation going.

About 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. We invite you to join us as we share the details of our life, finding care, and the search for answers of how to navigate this extremely rare disorder.

One Comment

  1. I cried when Robin died, a sense of humor is paramount is getting through life without having SS! His comedy was unique and wonderful, so is we, who suffer with this ridiculous disease can LAUG OUT LOUD, well there’s half the battle!!!

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