This morning I had a memory from my childhood.
That, in and of itself, is not particularly newsworthy. But it did make me think how my brain is working.
I have a degenerative brain disease called Lewy body dementia, and I think my experiences can be useful to the medical community and the care-giving community – or anyone interested in what it feels like inside the head of a dementia patient.
My memory this morning was this:
I was looking at some pants getting for work, realized the pants were — unlike most of my pants – too loose in the waist. The pants would be literally pants on the ground after about five or six steps.
This triggered a memory: it was a sunny day in Auburn, AL,. I was a 5 or 6-year-old kid going out to play on Rudd Avenue (which I don’t think exists anymore. The road’s there, but the name changed for some reason.)
In my memory I am running to get to the creek we used to play in and then we’d likely walk in the creek to Prather’s Lake.
As I run, I realize I‘m having to hold my pants up. With both hands.
I only had two things on like every Auburn boy on my street in the 1960s: Underwear and short pants. And my short pants kept sliding down. Not cool.
Luckily. I had belt loops on my shorts.
My memory only lasted a split second, but it was very visual. I remembered I found a piece of skinny rope. It was only about 5 or 6 inches long. Not enough to go all the way around my waist. So. I couldn’t use it like a regular belt because it was too short.
I guess the idea just spontaneously erupted in my 5 or 6-year-old brain. I tied two front belt loops together with that little rope. Tailor made! The britches held up nice and tight now.
I don’t remember anybody ever teaching me that trick or ‘hack’ as it would be called using current nomenclature. But, indeed, it was a real ‘necessity-is-the-mother-of-invention’ moment.
I think of this, not because there is anything unusual or profound about it.
But it made me stop and wonder why my brain chose to furnish me this quite vivid memory of a past event with no relevance to anything, other than it was triggered by me looking at some pants.
Is it my brain saying: ‘Hey, here’s some info you used before in a separate waist-fitting pants escapade. Here, see if this will help you,’ my brain seems to be saying. Pretty dang complicated for a brain awash in clumps of protein named after Dr.Lewy, who discovered them.
Or maybe it’s a symbolic lesson about how the answer, the cure, is right in front of you, like the piece of twine.
I’ve got my brain sitting here right now — and at all times — inside my head.
What if thinking alone can literally change the brain?
Wonder where that thought came from?
I’ll try it.
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Here are five essential facts about Lewy body dementia from the Lewy Body Dementia Association.
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LBD is a relentlessly progressive disorder affecting thinking, movement, behavior and sleep. On average people with LBD live 5-7 years after diagnosis, though it can progress as quickly as 2 years or as slowly as 20 years.
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Despite its low public awareness, LBD is not a rare disorder and affects an estimated 1.4 million Americans along with their families and caregivers.
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People living with LBD and their family caregivers need a high level of support from family members and healthcare professionals from the early stage of the disorder, due to early and unpredictable frequent changes in thinking, attention and alertness, as well as psychiatric symptoms like hallucinations and delusions.
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LBD is the most misdiagnosed form of dementia. Getting a diagnosis of LBD typically takes 3 or more doctors over 12 to 18 months. The LBDA Research Centers of Excellence network includes 25 preeminent academic centers with expertise in LBD diagnosis and management.
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Early diagnosis of LBD is extremely important, due to severe sensitivities to certain medications sometimes used in disorders that mimic LBD, such as Alzheimer’s disease and other medical and psychiatric illnesses. An early diagnosis also empowers the person with LBD to review, pursue and fulfill their personal life priorities before the illness progresses too far, review their legal and financial plans, and discuss their care preferences with their physician and family.
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Contact Mike Oliver at moliver@al.com Also follow his stories, including his quest to dunk at 58 years old on AL.com or myvinylcountdown.com
I had several close relatives who were profoundly affected by dementia. Therefore, my odds of getting dementia is slightly greater than others without relatives so stricken. One common thread dementia seems to mimic is that twilight zone time between dreaming and waking up.
Sometimes I awaken during a dream and forget where I am, and/or what day it is. Sometimes a very vivid dream is in the process and I wake up and ask myself “was that experience a dream or real? It may take several seconds to realize it was a dream. Or it was real. Or it was a memory of an event that happened 6 hours ago, or 6 weeks ago, or 6 decades ago. Or it’s a jumbled-up mix of all the above. For my 60-plus years I have so far been able to sort out what I just experienced.
The question I don’t know the answer to: If I ever have a dementia episode, will I be able comprehend it was dementia?
Thanks again Mike for the dedication to your blog.
THanks David,
That’s an area I’d like to continue to explore. One interesting thing about LBD is that when and if you have hallucinations, there are certain themes — children and animals, for example. I wonder why we have parallel experiences. It’s like it is something outside the body not inside………? Many of us see little quick glances of something zipping across the floor like a mouse or a roach. But the brain quickly corrects itself and says, nope just another scurrying hallucination.
And yes, dementia patients learn to live with the hallucinations by naming ‘I know you are not real’ You might say to yourself..
That’s easier done when you know what LBD is, what its symptoms are so correct diagnosis is what I’m trying to bring awareness to.
The purpose of my column today is wondering is what affects do our thoughts have on this brain malfunction?