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 Dictionary – to form (an opinion, for example) before possessing full or adequate knowledge or experience

Macmillan Dictionary – a 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)