Cognition and PersonalityDepression

Thread of Depression

Stress And Depression

Have you ever wondered which is the most frequent and sometimes incapacitating superficial siderosis symptom? Sensorineural hearing loss, balance problems, or nerve dysfunction are life-changing, but the single most shared symptom the members of our SS community battle is probably depression. Of course, not everyone will fall headfirst into a pit of despair, but the fight for your health wears down even the most optimistic person.

As your well-being slowly slips downward, stressors may begin to take hold. Your quality of life 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.

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. Published reports have shown the cerebellum plays a critical role in mood function.

Growing Weary

Loss of concentration, sleep disturbance, and cognitive or behavior changes can trigger episodes of depression or result from depression. In addition, physical pain or fatigue can be a consequence of a depressive state. Unfortunately, friends or family often dismiss feelings of sadness as run-of-the-mill, so they miss real signs of genuine distress.

Mental well-being screening of 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.

Losing Yourself

The last two 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 continued to build. His physical deterioration has progressed to constant pain, extreme headaches, hearing loss, and feelings of isolation. But the most significantly noticeable and frightening change was his short-term memory. I could feel the depression taking hold. It continued to worry me for months. Finally, 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 Healthcare System in January of 2017. I brought up our conversation from December in his interview. Depression and suicide are two very big trigger words within the Veterans Healthcare System. Gary felt he 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.


A diagnosis of superficial siderosis is a life-challenging event. Personality or mood changes are frightening, 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.

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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, became a partner in the Superficial Siderosis Research Alliance. Together our alliance has expanded into research, advocacy, and patient education. Rori Daniel, Editor,

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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