From a Caregiver’s Perspective: A Guide to Apraxia in CBS

Partners-logo-updated

Partners in FTD Care, Winter 2021
Download the full issue (pdf)

by Janet Edmunson

Apraxia is considered a core feature of CBS. However, people living with CBS and their families often find it hard to understand. Neurological textbooks provided the best summaries for my husband and me, but even with my master’s degree in health promotion, many of the neurological terms they used were foreign to me—or I had forgotten them. One of those terms was apraxia.

Apraxia happens when certain regions of the cerebral hemispheres in the brain do not work properly. The main symptom of apraxia is an inability to carry out simple movements, even though a person with apraxia has full use of their body and understands commands to move. We learned that different types of apraxia affect the body in slightly different ways:

  1. Limb-kinetic apraxia: People with limb-kinetic apraxia are unable to use a finger, arm, or leg to make precise and coordinated movements. Although people with limb-kinetic apraxia may understand how to use an object, such as a remote control, they are unable to carry out the same movement. My husband lost the ability to clap his hands or snap his fingers.
  2. Ideomotor apraxia: This form of apraxia refers to the inability to follow a verbal command to copy the movements of others or follow suggestions for movements.
  3. Conceptual apraxia: Similar to ideomotor apraxia, conceptual apraxia is an inability to perform tasks that involve more than one subtask. Due to my husband’s conceptual apraxia, we hired an aide to accompany him to work to assist with activities of daily living and simple administrative tasks like using the telephone.
  4. Ideational apraxia: People with ideational apraxia are unable to plan a particular movement. They may find it hard to follow a sequence of movements, such as getting dressed or bathing.
  5. Verbal apraxia: People with verbal or oral apraxia find it challenging to make the movements necessary for speech. They may have problems producing sounds and understanding rhythms of speech. My husband was very much the conversationalist and regularly enjoyed deep discussions with close friends, but his verbal apraxia brought these conversations to a screeching halt. When my husband lost his speech, he lost much more. I still cannot imagine the intense frustration he must have felt while unable to communicate. Eventually, he seemed to resign himself to his plight and gave up trying to express himself.
  6. Buccofacial apraxia: Buccofacial apraxia, or facial-oral apraxia, results in an inability to make movements with the face and lips on command.
  7. Constructional apraxia: An inability to copy, draw, or construct basic diagrams or figures is the core feature of constructional apraxia. This form of apraxia intrigued me most. On one occasion, at a neurologist visit, my husband was tasked with drawing a clock with the hands pointed to 2 o’clock. I was shocked to see the greatly distorted image that he drew.
  8. Oculomotor apraxia: People with oculomotor apraxia have difficulty making eye movements on command. My husband’s visual attention deteriorated. While his reflexes were OK, he appeared to have apraxia of the saccades (eye movements that help to reorient one’s vision). The neuro-ophthalmologist said his deterioration must be in the left side of the brain, mostly affecting vision in his right eye. The doctor used the term “Balint syndrome,” which explained my husband’s difficulty in controlling where to look and his trouble fixating on objects.

Apraxia presented itself in many forms throughout our journey with CBS. It was one of the most difficult symptoms to adapt to, as it was ever progressing. If families on this journey learn about the many forms of apraxia early on, it can help them adapt to its many presentations. Employing strategies to maintain a good quality of life for your loved one can be implemented almost immediately.

Janet Edmunson, a former board chair of CurePSP, is the author of a 2006 book about her and her late husband’s journey with CBS/CBD, Finding Meaning With Charles.

See also:

Stay Informed

color-icon-laptop

Sign up now and stay on top of the latest with our newsletter, event alerts, and more…