Cleaning up misconceptions

For the past 16 months, I have become accustomed to meeting and communicating with—

medical professionals in my ALS Team at UCSF
people involved with the ALS Association, and
individuals at the Martha Olson Fernandez Foundation (MOFF).

All of these people model patience, understanding, and a keen awareness of ALS traits.

Last week during an appointment unrelated to my diagnosis, a medical professional who has not followed my disease and may lack a clear understanding of ALS, caught me off guard. Whether the individual realized it or not, once they heard my muddled voice, they downshifted their speech speed and began enunciating more emphatically.

Preconceived –

American Heritage Dictionaryto form (an opinion, for example) before possessing full or adequate knowledge or experience

Macmillan Dictionarya preconceived idea or opinion is formed before you have a lot of information, experience, or evidence and is therefore probably wrong

Merriam-Webster to form (an opinion) prior to actual knowledge or experience

As a person diagnosed with ALS, my verbal communication skills are progressively worsening. My speech is markedly garbled. The sheer mental and physical effort it takes to try to formulate words and make myself understood leaves me utterly wiped out.  But please don’t fall into the trap of assuming my messed up speech is an indication that my cognitive skills and/or my hearing are also jeopardized. My mind still thinks, reasons, and processes just as well as it ever has; however, my tongue and lips no longer clearly articulate. My hearing hasn’t diminished. Good news! You don’t need to speak louder, slower, nor enunciate more dynamically when you speak with me. I can understand you just fine.

The above holds true for most people who have been diagnosed with ALS. While there are some people with ALS who exhibit symptoms associated with dementia, by and large, most retain full mental capacity up until their passing. If you are interested, WebMD has an article delving into cognitive changes in some ALS patients.

Researchers have increasingly begun to recognize that in some cases, people with ALS can experience cognitive changes that are severe enough to be called dementias. Dementias are a type of severe brain disorder that interferes with a person’s ability to carry out everyday activities that involve attention, memory, planning, and organized thinking. Research on the relationship between ALS and dementias is ongoing.

Dementia in Amyotrophic Lateral Sclerosis (ALS)

On Passing Notes and Other Reflections

Communication is something close to my heart. Even prior to kindergarten, conversing with others was enjoyable. Anyone remember report card “citizenship” grades? At Sierra Madre Elementary School, citizenship grades were a big deal and never slipped through the cracks. My teachers persistently marked my report cards with a “C” or “C-” in citizenship for talking during class when I was supposed to be quiet. All that did was encourage me to go underground by passing notes to classmates!

Trying to suppress a talkative person is, in some ways, like trying to tame the mighty Mississippi River. On one memorable November afternoon in 2011, while Jon and I stood on a bluff in Natchez, Mississippi, overlooking the Mississippi River, we met a keen man in his mid to late 80s. From birth, he had lived in a very big, yellow, wood frame house situated directly behind us on the bluff. He eagerly shared his insights about the River, including recurrent extensive efforts by the United States Army Corps of Engineers to redirect the river at specific bends. Based on his broad knowledge, he was convinced the River outsmarts even the most ingenious engineers . . . deliberately choosing its own path. But the engineers haven’t given up—they keep trying to force the River to comply with their will.

Continue reading “On Passing Notes and Other Reflections”