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)

4 Replies to “Cleaning up misconceptions”

  1. “The Lord is my light and my salvation; whom shall I fear? The Lord is the stronghold of my life; of whom shall I be afraid?…
    Though an army encamp against me, my heart shall not fear; though war arise against me, yet I will be confident.” Psalm 27:1,3

    I see “fear” in verse one, and “confident” in verse three. That is the Presence of God in you, dear Leslie. You are the embodiment of confidence and trust in our Great and Powerful God. May you rise out of those moments of misunderstanding and pain with your hand locked in His.

    May we all be “quick to listen, slow to speak, and slow to anger” – a reminder when speaking with others, for we know not their story.

    Thank you for bringing us into your world.

    1. Thank you, Katie, for sharing your insights and encouragement from Psalm 27. We have heard that we shouldn’t judge a book by its cover, but it’s so easy to slip into that mentality.

  2. I experience the same thing now that I’m a cancer survivor and have been free for 1 1/2 years. “Are you feeling all right?” Recovery from treatment took longer than I expected but I’m fine now,

    1. If a person hasn’t experienced a serious illness or walked through one with someone they dearly love, it’s very difficult to relate and even know how to most effectively communicate with the person who is sick. So thankful you’re now cancer free! 🙂

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