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 of life begins to change. Conversations become impossible to follow and going to work a nightmare. Diplopia or nystagmus robs you of your ability to drive. The bonus, if you live in a rural area without access to public transportation, say goodbye to your job and your independence. If you're one of the lucky few to develop anosmia enjoying your favorite foods is now a memory.
Stress And Depression
Chronic stress can naturally evolve into depression, but there is also evidence of a biological connection. Screening Superficial Siderosis patients for depression needs to be a regular part of their plan of care. Loss of concentration, sleep disturbance, cognitive and behavior changes can be the cause of and caused by depression. Increased physical pain and fatigue can be real consequences in a depressive state. Friends or family often believe feeling sad is run-of-the-mill, so it's easy to miss the distress.
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 last few years have been very hard on Gary. He had to give up his job; they made him stop driving. A sister lost her battle with cancer. Stress and anxiety. His physical deterioration continued, body pain, constant headaches, hearing but the most significant noticeable change being 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 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 VA healthcare system this past January. I brought up our conversation from December in his new patient interview. Depression and suicide are two big trigger words with the VA. Gary explained he merely meant he understood what would drive someone to take their life. I was given instructions for emergency intervention if it ever became necessary.
This October we traveled to Little Rock for an updated neuropsychological exam. His first test was in 2014. The results were consistent with his previous testing. No signs of dementia but there was still mild cognitive decline with short-term memory loss. Clinical depression was a significant contributing factor regarding memory problems. Dr. Fazio suggested starting a treatment plan, but Gary has chosen to decline therapy at this time. We returned home with the understanding of the importance of annual screenings and caregiver intervention.