Changes

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We should take a moment to discuss the elephant in the room; the cognitive, emotional, and mood changes that may accompany this disorder’s progression in moderate to later stages. It is comforting to realize that not every superficial siderosis patient will experience cognitive issues or behavioral changes. Emotionally, a select group of superficial siderosis patients will be fighting Mr. Toad’s Wild Ride every single day.

Our community has learned how movement, gait instability, speech impairment, uncontrollable eye movement, and swallowing problems may manifest as the result of superficial siderosis induced damage to the cerebellum. Schmahmanns’s Dysmetria of Thought is a theory that suggests the cerebellum also plays a crucial role in the flow between thinking, actions, feelings, and interpersonal interactions.

…the cerebellum regulates not only the rate, rhythm, force and the accuracy of movements, but also the speed, consistency, capacity, and appropriateness of cognitive processes.

Jeremy Schmahmann MD, Director, Ataxia Unit, MGH

Family members or caregivers often are at a loss to explain the early subtle and sometimes not so subtle out-of-character changes they witness. Cognitive problems muddy the thought process. Memory issues lead to frustration. Hearing loss compounds feelings of isolation, loneliness, and depression. All too often, frustration leads to angry emotional outbursts, followed by guilt or sadness.

Research has not yet identified a way to reverse neural tissue damage. Still, you may be able to begin a discussion with your physician about available drugs developed to help improve attention and concentration in some types of dementia. Strengthening your cognitive reserve by exercising your mind with puzzles and games may help your thought process. Visiting a cognitive therapist can help with the frustration of daily life by helping you learn new memory techniques and tricks.

Dealing with the disruption of emotional regulation, increased irritability, angry outbursts, or inappropriate behaviors requires great patience and understanding. Some caregivers struggle with the realization that they may not be up to the task. Your community understands. All family members, caregivers, and superficial siderosis patients are encouraged to connect with those who will understand the problems you are facing. Our online support groups provide everyone a safe space to ask questions, chat, or vent. This journey may be a wild ride, but make no mistake; you do not have to make it alone.

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. Maggie Dittmeier

    I will say, THIS, journey requires a bit more , well in my case, good old New England stock. I believe that my Dad who taught his children how to play chess at a very young age, was a smart fella. Although, I probably won’t beat you, I still like to play. The way I make it through having SS, is the reading of the living word, in my Bible every day.

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