This is an opinion column by Mike Oliver who writes about living with Lewy body dementia.
Come on in.
Welcome.
Welcome to my brain.
The brain is the big boss. This is where it begins -- and possibly ends.
I have a brain. (Thank God I was in the right line for that).
But I am not my brain.
Sure, my brain is the Bill Gates of my operation on Earth. But Gates has many thousands who make up Microsoft. Of course it’s all directed and put in play by Gates. When my stomach hurts my brain tells me. But my stomach almost simultaneously mobilizes the forces to find whatever distresses it and help with a fix. The brain keeps the light on while the body parts do their job.
The brain is me but not me only. It’s the conductor of a million symphonies as my body comes together in symbiotic synchronicity. Harmony.
But not always, and certainly not forever. My brain is broken now.
And depending on the source, one lives an average of 4 to 9 years after diagnosis. I was diagnosed, first with Parkinson’s and later Lewy body dementia in 2016. In an internal battle, proteins are killing my brain cells by the 10′s of millions. Near the end, autonomic will not be automatic.
So, welcome to my brain. Let’s have a little fun. (That’s my new motto).
I have arranged a tour with my assistant, Bobo. Reader 1 and Reader 2 are here to take notes so we can better understand this dementia thing and spread the word.
Bobo was guide as we explored the labyrinth of Departments which oversee a multitude of Offices inside my brain. Bet you didn’t know there was such a bureaucracy in your head. But heck there’s a 100 billion brain cells to keep in check.
"Let’s stop here and peek into the Office of Autonomic for the People,” said Bobo.
Reader 1 is a devoted newshound who reads everything and wants more. Reader 2 is a critical reader who finds all typos and holds them up in the comment section
Inside the office are three staffers: Two are playing cards and one is fixing coffee. This office doesn’t get a lot of action because it oversees the autonomic nervous system -- something that dementia will attack, leading to shortness of breath, sleep disruption, and constipation, among other things.
The autonomic system, as these gentlemen displayed, is on cruise control. Breathing, digestion, heartbeat and all that.
Breathing for example. You don’t stop and tell yourself to breathe every time you take a breath. You don’t say ‘Beat heart, Beat heart’ every time your heart beats. It’s automatic or autonomic.
“I sleep to the sweet sounds of heartbeats and snoring,” Office Worker 1 said.
“But what happens when Mike’s disease shuts one of the systems down?” Reader 1 asked.
“Well, with a full shutdown such as heart stoppage, we would go into emergency mode, which has never happened here with Mike. Right Mike?” the office worker said. “Something like constipation, we’d recommend prunes.”
I was starting to feel a little nauseated.
“Yeah,” I said., to the worker. “But I would feel better if you all go through some drills and practice before the big heart attack hits.”
A chill swept over my body bringing on a cold sweat, a buzzer went off in the office. The color drained from my face.
“That’s part of the disease,” Office Worker 2 said. “Your thoughts have triggered an autonomic reaction which is strengthened and heightened by the presence of Lewy bodies killing brain cells that would otherwise be regulating this.
I wiped my forehead and said: “This I know. What’s next?”
This brain tour wasn’t making me happy; I need another ‘storming’ session with my brain. I made a mental note by using a Post It Note. It fell off the mini-fridge in the Office of Autonomic for the People and fluttered under a cabinet as soon as the group left the room. I immediately forgot about it.
“Let’s stop in here,” Bobo said. “It’s the Vision Clinic, an office under the Department of Hallucinations. Some dementia patients especially those with Lewy body dementia, see visions or presences.”
This I know about too and braced myself as we entered the door. Yep, when I walked in, I felt like I was in a Saturday Night Fever disco. With flashing strobe lights and little creatures scurrying in and out of the floorboards. A coat rack turned into a woman dancing before it turned back into the coat rack, as I did a double-take. A view out of the window revealed a movie playing and I was in it. I summoned my defenses. I handed my coat to the coat rack lady. “Thanks,” I said. “I’ll tip you next time.” I was playing along which was my strategy. To the shadow guy following me at my left shoulder I turned and said, come on, I know you’re there. “Go dance, have some fun,” I said.
A tap on the shoulder; it was Bobo.
“Boss, are you all right?”
“Yeah just checking in with my ghosts.”
Bobo explained the difference between hallucinations – a complete presentation of something that’s not there – and delusions where something (coat rack) appears to morph into something it’s not. I’ve had both and the answer is to keep working with your brain to keep that toe in reality. I’ve found that I see faces made up from the room’s environment - a clock on the wall, for example- when I’m in these phases. Good thing about this? You are never alone.
I had arranged this tour of my brain with, of course, much help from my brain, as part of my ongoing effort to spread the word about dementia, including Alzheimer’s and Lewy body dementia.
Dr. Frederic discovered the link of a protein that is an indicator in Parkinson's and Lewy body dementia.
Hopefully some of my writings can be useful to those who suffer dementia, care for those who suffer, or just want to take a peek into my brain. So we left the Vision Clinic and Bobo had to take a phone call.
If I can keep my present state of cognition, I figure I can do this well over the course of a year. I started my blog 2017 just after being diagnosed, first with Parkinson’s then with Lewy body dementia.
So inside my brain, our emergency system is at its top level.
Suddenly Bobo yells: “Keep your heads down now.”
Streaking at that moment through the crevices, folds and tunnels of my brain comes a large banner at blitz speed which said in large lettering: Where is my cell phone?
“Whoa!” What was that? The group was unnerved at this time and casting side glances.
“Random thought,” said Bobo, who works in the Office of Perception is Everything (PIE). “Your random thought of course.”
“Well where is it then?” I asked.
“What?” Bobo asked.
“My cell phone,” I said.
“Probably the last place you put it.”
Bobo tried again for clarity. “Your brain memory banks have taken a direct hit. That’s what this stuff [excess protein] does – it goes for the memory. You are experiencing typical symptoms of a dementia patient: losing things all of the time; forgetting why you came into this room; forgetting why you are holding that book. Staring too long at people because that memory gear in your head is slipping more often than before.”
Here we entered an area roped off with yellow Crime Scene tape.
Bobo turned into tour guide mode: “Okay follow me here to the Department of Awareness. Mike has decided this is the most important department in the brain. It’s operation oversees the offices of Memory, Recognition, and Time [MR.T].”
Bobo continued: “Mike believes by keeping this department buzzing and energetic, countering memory losses with brain exercises, trying to guess what the time is and forcing himself to remember if he took the scheduled medication or not. Ignoring or denying this Awareness department, leads to the lights going off in the office, lower work production and ultimately, depending on random slime attacks, the death of office working neurons. The slime is real, a type of protein that smothers the neurons.
“While Mike is shoring up the Awareness Department against such attacks, these proteins slip and slide around the brain folds and wreak damage when they clump together like trash and forest debris in the bend of a North Carolina mountain stream. “
“Now let’s come down here and brace yourself, these neurons affect the physical body. The hostile proteins come in like sledgehammers so there is a whole lot of shaking. Mike was behind on his medication because of a misplaced file in the Time office.
“That led to a storming by these rogue proteins of the Department of Body Control. Mike’s hand is shaking right now and his body feels uncomfortable. Mike is walking around the room shaking his hands out like shaking wet hands dry.
“Wait wait I have an appointment at 3:15 p.m.,” I shouted out of the blue. “Why didn’t anyone tell me, or why didn’t I tell me?”
Bobo told Mike it was only noon, that he has three hours before the appointment.
“Well you know that I’m not good at multi-tasking.” I fired back.
It was time for the tour to end. I said goodbye to Readers 1 and 2 and walked out with Bobo.
“You know Bobo, how do we do this?” I asked.
“What’s that, chief,” he replied.
“How do we take people on tours of my brain? I just don’t understand the process.”
“Well you thought of it boss,” Bobo said.
“Yeah I guess I did – or my brain did,” I said.
“It’s all on a sophisticated computer grid,” Bobo said, realizing he was going into classified information. “The computer is an amazing thing.’’
“So what do they call this so-called computer?” I asked, skeptical.
“Dirt,” Bobo said. “Or dust. The dead and decaying exist for life. One dies. Another is born. Lightning hits a tree and burns the forest down. And almost immediately new growth begins.
“We may not understand it yet -- but clues are left with us as we enter into REM sleep. So the official name is Grid of Dirt but most of us call it Grid of Dreams.
G-O-D, for short.
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Mike Oliver’s blog www.myvinylcountdown.com
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