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Feeling under the weather

I went to work today really feeling it. Nope not in a good way. I was stiff and sore,  not unlike most mornings, and not unlike many people in their late 50s.

But  I was extra sore.

And I had some other problems that I won’t go into detail about. Let’s just say gastrointestinal, which is what people say when they don’t want to go into detail about it.

As I talk to more and more people, they seem sincere in their inquiries about what I feel like, um, maybe not so much the GI stuff. You may  remember, I did a whole post about saying I was fine.

Well, i’m still fine, the good fine, and sometimes the bad fine — Feeling Insecure Nervous and Emotional.

Today was, I have to say, the acronym FINE.

So, I’m taking some time to do some pondering. Hope you will ponder with me.

The big question I sense people having but may be too polite to ask: What’s going on inside my head? After all I have an oversupply of proteins in my head,  is killing my neurons (my mind). What’s going on in my head from the perception of someone’s whose head it is happening to.

I write this on a Monday under the threat of severe weather, including tornadoes.

I spent a lot of time on the road in 2011 talking to victims of one of the most explosive tornado outbreaks of all time. I spent nearly a year covering everything from search and rescue to funding issues to FEMA, most importantly stories of the people.

An aside: If you want to sit down for a nice  spell and read about the April 27 event, here’s something I wrote on the first anniversary. If you get to the bottom of that one and want more,  click the link to Part 2.

I wrote a lot after talking to people in Hackleburg, Pleasant Grove, Joppa, Pratt City, Smithfield Estates, Rainsville, and many other small and larger communities. There was something like 340-plus killed across several states,  with the most (more than 240) in Alabama.

In my interviews that  question was always in my mind: ‘What’s going on inside your head?’ How are you  going to cope with the total annihilation of everything you own, or the loss of loved ones?”

I’m not sure I was that direct in asking the questions but I believe I found the answers: in the sound  of bulldozers, funeral processions, hammer on wood. and chainsaws. The rescue personnel, again from here and out of state.

That was the answer. But as those, who follow my blog know, I keep  looking for bigger, different answers as well. What is our purpose? Why is there such suffering in the world?

Is it like what T Bone Burnett  sings in the song, ‘Trap Door?’

You’ve got to suffer to know compassion
You can’t want nothing if you want satisfaction

What’s going on inside your head Mike?

Today wasn’t the best day as noted earlier. My brain function feels sluggish. My head is buzzing a bit, which it is prone to do. My memory is fair. I’m shuffling when I walk.  My basketball game? Not good at all.

It’s happened before and it will pass.

As long as I am chronicling this. I often get what feels like a low-tiered burning sensation on the right side surface of  my ever-growing belly. I’ve kind of written it off as my skin reacting–stretching — to accommodate my new size. (Which, I am working to get off — about 20 lbs.)

I had fallen to one basketball game a week and am now back at 2 a week. Progress. My diet needs to get better. I have so many tips on diets, it’s like I blend them together and pretty soon I’m eating more, not  less. (Thanks for the lemon meringue pastry Chez Fon Fon, dessert after eating what appeared to be a half-pound burger). So good. So not so good for me right now. (Of course, my internal argument spurred on by my remaining neurons is this: ‘You want some meringue pastry lavished with whipped cream, you should get it.’ I am quite susceptible to that argument.

Catherine took me to the Southside restaurant for my memorial ‘Porter Heatherly’ birthday on March  9. See my post

So what’s inside my head? Fear.

Not going to lie.

Fear of leaving my grown-up children, Hannnah, Emily and Claire, my super supportive wife, Catherine, my siblings Julie and David, my parents, friends. Gus my dog. Nieces nephews. Inlaws, outlaws. The Earth!

There is fear, fear of losing.

Tornado victims can lose it all in a moment. Lewy body dementia takes it all away bit by bit.

At least  I have the bits. And pieces. I am thankful for that.

I’m looking outside as I wrap this up. It’s still clear and pleasant outside. No sign of bad weather here in Birmingham.  Good weather for now to be under it.

Prayers that all remain safe tonight.

Relationships are fragile I once wrote. Life is fragile too.

What’s in my head right now? No, wait, what’s in my heart?

A movement. A movement toward: Peace.

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What existed before the Big Bang

NOTE: I wrote this humor piece on Monday March 12, 2018, and published it on my website www.myvinylcountdown.com Tuesday morning. Hawking died Wednesday, March 14  (on Albert Einstein’s birthday. Wink wink.) RIP Stephen. I hope you now know the answers to the  questions you’ve been seeking. 

My blog post:

Perusing my news sources on the Internet, I came across this headline.

Stephen Hawking reveals what existed before the Big Bang

Finally, I thought.

Reading …Oops wow, there it is in the second sentence. The answer the headline promised us. What existed  before the Big Bang:

Stephen Hawking says: Nothing.

Nothing? Nothing existed before the Big Bang. Really?

Clickbait headline for sure.

Physicist Stephen Hawking

What is nothing? Nothing is something, right? At least in my mind. If nothing was not something, why would there be a name for it? And why would we say ‘nothing’ is what was there before something? To ‘be there’, one would surmise that it’s something.

The story  on Inhabitat.com was short but did offer the famed quantum physicist Hawking explaining a bit further. So Hawking goes on to explain that “The Euclidean space-time is a closed surface without end like the surface of the Earth.”

He was, of course,  referring to the four-dimensional conceptual model that incorporates the three dimensions of space with time. He goes through a few more quantum physics hijinx like ‘imaginary’ and ‘real’ time before concluding that:

“There is nothing south of the South Pole so there was nothing around before the Big Bang.”

Apparently this was a widely reported interview. Did you hear the collective expression:  ‘Oh, now I get it.’

Neither did I.

Come on Hawking. Use your words to explain — not alienate.  (Which literally means communicate with aliens).

What if I wrote a story about the news business and  how social platforms are shaping the future of social engagement including virtual reality and messaging apps in order to better monetize content. Don’t like that I bet.

So back to your answer. Nothing.

And your follow-up explanation which I boil down to that last sentence: There is nothing south of the South Pole so there was nothing around before the Big Bang.”

Ok, I don’t want to mess your theory up but did it surprise you there is nothing south of the South Pole?

Stephen, it’s cold.

I’m sure there’s not much north of the North Pole either, no?

Confused? Me, too.

Albert Einstein

So that’s why I decided to call Bert Einstein, third cousin, twice removed from Albert, the world famous scientist who discovered the equation for the theory of relativity, E=MC squared.

Bert, an accomplished scientist in his own right, discovered the equation for the theory of relatives at Thanksgiving:  E=MYaSS, which asserts that the mass of any given relative’s rear end will grow proportional to the  length of  the buffet line, number of desserts, energy not expended and length of stay  (LOS).

(It’s a complicated formula that also incorporates family squabble intensity and gravy.)

So, here’s how my conversation with Bert Einstein went.

ME: Good morning Dr. Einstein. We were hoping today you would sit down and talk about some big physics like your relative Albert pioneered.

BERT: Yes, yes,  Albert had some good ideas. But he was dumber than  a box full of hammers when it came to common sense. Never owned a hairbrush you know.

ME:  OK, Bert, what about this whole Big Bang and what existed before the Big Bang. Scientist Hawking says there was nothing before the big bang, indicating a beginning and end to our universe. But we wanted to see if perhaps you heard Albert discussing this particular question at any time.

BERT: Oh Albert knew all about what existed before the Big Bang. He just never really got around to putting it on paper. You know Albert had 300 socks and none of them matched? He’d spend hours looking for a  matching sock.

ME: Really?  Forget the  socks. Are you saying he knew about what preceded the Big Bang but never wrote it down? This is a big deal. What did he say was there before the Big Bang?

BERT: Well, let me see if I can remember exactly. He said that before the Big Bang there was ‘nothing’ and ‘something’ and ‘everything.’

ME: Wait, wait a minute. He said there was nothing AND something AND everything? How can that be?

BERT: Well it’s a pretty goddamn big universe. Whaddya expect there to be, a  mustard seed?

ME: Well, I guess I still don’t see how something can come from nothing or how there can be everything and nothing.

BERT: That’s why they were all there before the Big Bang, something, nothing and everything.

ME: All where? Where were they?

BERT: Here. And elsewhere.

ME: Your not helping. I got nothing here.

BERT: Well that’s something.

ME: I want everything. I want to know.

BERT: Well, I’ll leave you with this. It’s a circle. God or the universe or the cosmos, it’s a circle. There’s no beginning or end.

ME: Oh. Well,  now that makes some sense. Did Albert say that?

BERT: No I did, after watching Albert all the years doing laundry. No beginning, no ending. Laundry’s never done.

ME:  Well, Bert, you’ve been a big help.

BERT: De Nada

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Words, don’t fail me now

Words fail me.

Or should I say: I fail words.

You know that feeling you get when you lean back on two legs of a four-legged chair and suddenly you realize you’ve gone too far? You know that feeling? A split second of feeling totally out of control?

I feel like that all the time.

That joke reformulated by me from deadpan comedian Steven Wright is essentially about words.

There is not  a word for that feeling.

Sure you can say ‘out of control’ or you can say ‘scared’ but none of that matches or encompasses the specific instance of leaning back in a chair and nearly losing it. There’s no one word for that.  In fact, it takes several sentences to explain.

My own word for that? Yikes!

But that doesn’t exactly capture everything. And that’s also the word that describes the feeling you have as the roller coaster begins its descent.

There is a word (or phrase) for a feeling that people report to have that they feel like they have been in a place they had never been or are in a situation that they feel  like they have already lived through.

English speakers  appropriated  the word from France: deja vu. 

(Technically that’s two words but those two words, six letters total, go together to represent a complex idea. See how long it took me to explain it.)

Words are symbols formed by assembling letters. What are they symbolic of? Thoughts?  Are we not thinking in words, already? Take away the words, what do we have?

A frustrated person.

Catherine told me the story of a 100-plus year old nursing home  resident, barely 5-feet-tall, who attacked the staff. I mean she hit and kicked the staff. She had a urinary tract infection and that hurt. But she  could not communicate that. Getting physical at a century old was all she had to fall back on. The need to communicate is a strong one. One wonders if our world leaders could better communicate, we might avoid the violence that stains humanity.

Someone asked my daughter what her biggest fear was. And she couldn’t think right away what it was,  but eventually hit on one that is  a big one for many: Fear of failure.

That  used to be my biggest fear, and I think a lot of people live with that.

My greatest fear now? It’s  losing my words.

Unfortunately with Lewy body dementia that’s a key symptom. I already find myself struggling to come up with some words. This occurs mostly during speaking and not as much when I write.

In conversation with my colleagues and friends it is subtle but I realize it is there: my struggle for words. It’s like in my brain I am searching a cavernous warehouse for one little item, one little word.

It’s  an Amazon.com warehouse only when they push a button to  have a robot/machine fetch the item from among a million things, the robot sighs. Like the robot  in Lost in Space with its plug pulled. I’m left rummaging through this warehouse. I find a ladder, go up to the top shelf and there it is. My word.

I’ve done this before, it’s deja vu.

Actually, my word is ‘restorative.’

“The ocean’s waters are really …., um, really …) I start this sentence in a conversation about the beach, but I can’t finish because I can’t think of the word. Amazon warehouse thing kicks in. I’m on my ladder looking. Why is it always on the top shelf, I mumble to myself.

Cold? someone offers, you mean the ocean is cold?

RESTORATIVE, I finally answer a little too loudly. Everyone sighs with relief.

I have an aunt who has brain damage from unknown origin. Could have been a high fever as a young child, we don’t  know. But she’s been this way as long as anyone remembers and currently lives in a group home.

She can  talk but does so only if you ask her questions and typically they must be yes or no questions. She’s now in her 70s but seems like a child. She, now and again, will  have a little crying jag, clearly out of frustration that she can’t communicate. She’s got  so much to say, she just can’t find the words.

Painting by Jean Gill.

She’s  a voracious painter. She has won awards. Here’s one of her paintings.

You may remember my stories about Porter Heatherly the little boy who died at 4 of a rare genetic disease. He never uttered a word in his short life but he was loved by many and spurred fund raising and research to find a cure for GM1.

And you may remember me writing about my former boss, now in a memory care unit. I hadn’t seen him in decades, he recognized me and wanted to talk newspapers. But what came out was word salad. He couldn’t string the right words together. And he knew it. And his eyes showed the frustration.

I don’t want that.

But with me, realistically, it will happen. Hopefully some years from  now. But some cases I have read about say it can escalate quickly.

So now, while I can, I want to express myself as I have done all my life through the written word. To those who have cared for me, family, friends, colleagues, parents, cousins. Those I never met or haven’t seen in forever who have offered prayers, contributed to my bucket list trip, my Mike Madness tournament. To all those who have put up with my sometimes morbid sense of humor (to Hannah, Emily, Claire and Catherine.)

I give you these three words:

I love you.

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Porter and Me

There is no cure, the doctor said.

This brain disease. Shortened lifespan.

The diagnosis came out of nowhere it seemed.

How could it be true?

The baby would never grow up.

Porter with dad Michael at 12-month old birthday party. (Mike Oliver).

I started writing about Porter Heatherly long before I was diagnosed with my own brain disease. The first story was published Oct. 31, 2013. It was based on my visit to the Heatherlys in Opelika on Porter’s 1 year birthday.

Here’s how that story started:

 Like a big boy, Porter Heatherly sat back in the infant seat like it was a throne, holding up his arm from time to time and smiling as if to acknowledge his subjects.

Two dozen people, many relatives, stood around the blond boy in the bib and sang Happy Birthday.

Cameras and camera phones snapped and flashed.

A few brushed away tears.

Porter was 1-year-old on this day, Sept. 14, 2013.

I continue.

Sara Richter and Michael Heatherly were high school sweethearts in Cullman, where they both grew up. Both went to Auburn University, got married, got jobs and settled in neighboring Opelika.

Unbeknownst to them, both were carriers of a rare genetic disorder.

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I learned a lot that birthday visit in Opelika. It would not be my last Porter birthday visit.  I met family and friends. I found out about the disease.

A Heatherlys Christmas with Porter.

Porter had a rare incurable genetic condition called gangliosidosis type 1 or GM1.

I later called the UAB specialist who diagnosed Porter.

“There is no cure,” the doctor said. “It’s an inherited disorder and progressively destroys the nerve cells in the brain and spinal cord.”

She said life expectancy is about 2 years.

I also learned that this 1 year birthday wasn’t really his first birthday celebration. The parents had decided to celebrate Porter’s birthday once a month. So, in their eyes, it was Porter’s 12th  birthday, going by months.

I had some quiet time on the drive back to Birmingham and the more I thought about it, the more I loved the Heatherlys’ idea of monthly birthdays.

By doing that, the parents were choosing to stretch time making  the most of the time remaining. They may not have had more time, but they sure as heck could create more moments.

Told that Porter’s life expectancy would be 2 years, they chose to have more than 20 birthday celebrations instead of just 2.

The Heatherlys ended up having many more than 20 birthdays with Porter but let’s not get ahead of ourselves here.

I was so impressed with their decision that I asked Michael and Sara  if they would help me put together a post for AL.com on each monthly birthday, the 14th that would give an update on Porter’s condition, activities and such. They bravely said yes. They bravely agreed to, in this time of grief and hardship, open up their lives for the sake of helping people and research.

The monthly posts, which were usually in Sara’s own words but sometimes in Michael’s, were successful, chronicling medical triumphs and set-backs, good days and bad days, Auburn football games attended, fishing exploits and other activities. But they couldn’t help but reveal that the nature of Porter’s illness meant that he was slowly getting worse.

Porter was regressing as he passed his 24-month birthday which was his average expected life expectancy. He continued through and past his 3rd year. All the  while, he was helping raise awareness and money for research.

The irony as you can read in my earlier stories is that Auburn University was a world leader in this kind of research, a fact the Heatherlys accidentally  discovered at church when they ran into a researcher there.

(A side personal note: The Auburn United Methodist Church is the same one I attended as a child when we lived for a short time in Auburn during the 1960s. And to continue with these so-called coincidences, the research was being conducted through the Scott-Richey Foundation, a research funding entity created by Dr. Frank Hoerlein, who was a friend,  teacher and colleague of my father, John E.  Oliver.)

Sadly, although there had been some great breakthroughs, a medicine to stop the disease’s growth or prevent the disease was not yet developed.

With GM1, Porter’s body lacks enough of an enzyme to break down GM1 ganglioside, a substance important for normal brain cell function.

The parents understood the reality of what would happen.

Porter’s smiling face, captured in memories and photographs at his 12-month birthday had, as he faced his 4th year, faded to a mostly blank stare.

Moving forward to present day, I struggle to type now because of some symptoms I’m having at night affecting my right hand and arm. If you are on this blog you likely know my story. If not check out the About Me  button at the top of the page. Or a story I wrote after diagnosis.

I have Lewy body dementia,  a degenerative brain disease (talk about irony).

It’s not like Porter’s, which starts at birth. But it is incurable like Porter’s. In other words, realistically, I will not get better only worse.

I have to say, I fear the blank stare.

The  average life  expectancy after diagnosis is 5 to 7 years.

Or, let me put it another way. My average life expectancy after diagnosis is 60 months to 84 months. Thanks Heatherlys. I’m 58 now, I’ll easily live to be 100 with the Porter method of counting.

I am also vowing to celebrate (however small the celebration) my birthday, Nov. 9, every month on the 9th.

Porter doubled his expected lifespan. Porter died, Nov. 10, 2016, at age 4.

That’s about the time that I got a confirmed diagnosis of  Lewy body dementia. I just now noticed that as I wrote these words. (Note to myself: Check the date of my official diagnosis.)

At the time I wrote this for AL.com:

Porter Heatherly, the 4-year-old boy with a rare genetic disease called gangliosidosis type 1 or GM1, died Thursday morning at his home in Opelika surrounded by his parents and a hospice nurse.

“There is some kind of relief to know that the fight is now over for him, to know he is not suffering anymore,” said his mother, Sara Heatherly.

The Heatherlys say that they will continue to work to help Auburn University where researchers are looking for a cure for the inherited disorder. The disease progressively destroys the nerve cells in the brain and spinal cord.

Porter’s father, Michael Heatherly, said between $90,000 and $100,000 has been raised for Auburn research at two fund-raisers to benefit CureGM1 Foundation.

“He’s impacted so many people through helping the research and raising awareness of the disease,” Michael said.

AL.com began following Porter soon after his first year’s birthday with monthly updates labeled Porter’s Precious Birthdays.

Sara once said in one of her updates that it was amazing how much she and Michael could love someone who couldn’t talk.

“Porter never did reach out to touch my face or things like that, but there was a special bond with him,” she said. 

What did Porter do? What did his life mean? He couldn’t walk, talk or even roll over.  As time went on he didn’t interact at all.

But he inspired thousands. He brought people together in a circle of love. He helped raise money for research which hopefully will help other children in generations ahead. He touched my heart.

Today, Feb. 14, Porter would be celebrating his 53-month birthday.

Happy Birthday, big guy. We miss you.

Porter Heatherly

Sept. 14, 2012 – Nov. 10, 2016

See Porter’s memorial Facebook page

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Does anybody really know how many Lewy body patients are out there?

So if you’re walking down the street sometime
And spot some hollow ancient eyes
Please don’t just pass ’em by and stare
As if you didn’t care, say, “Hello in there, hello”

   John Prine

Staying on topic again. Lewy body dementia. Quick quiz.

I’ll answer for you.

  1. Do you forget things, names for example? Um, sometimes.
  2. Are you constipated? Um, sometimes.
  3. Do you have muscle and joint stiffness? Um, sometimes.
  4. Do  you have vivid dreams? Well the other night I had some jalapenos on my nachos and man I was dreaming of  …..oh, so? um sometimes.
  5. Do you see things out of the corner of your eye, turn to look and it’s gone? Um, sometimes but that’s because I  have floaters in my eyes. 

Do you have Lewy body dementia? I dunno. What’s Lewy body dementia?

I’ve gone over these angles before but I recently read a research paper published in 2015 that generally backs up much of what I’ve been saying. But it does so in other words, which I found helpful.

I was (mis)diagnosed  with Parkinson’s disease first in 2016 and  then diagnosed with what we are pretty certain is Lewy body dementia a few months later. What was frustrating as a newcomer to these diseases, is how little absolute knowledge there was because everybody is different, brains are extraordinarily complex and what the hell are  all these alpha-synuclein proteins really doing in my brain?

Lewy Bodies in the brain. Public domain Wiki.

The research I was reading was posted on the Bio-Med Central website and authored by Brendon P. Boot of Alzheimer’s Research and Therapy.

Boot said while Lewy body has been pegged at being about 4 percent of all dementia patients, the figure is actually much higher.

“Dementia with Lewy bodies is an under-recognized disease; it is responsible for up to 20 percent of all dementia cases,” wrote Boot. “Accurate diagnosis is essential because the management of dementia with Lewy bodies is more complex than many neurodegenerative diseases. This is because alpha-synuclein, the pathological protein responsible for dementia with Lewy bodies (and Parkinson’s disease), produces symptoms in multiple domains.”

This is great stuff. This is why I have been harping about why the medical community needs know about Lewy, what it is and how to monitor. When a 58-year-old constipated man, who ate recently at Pete’s Nachos and who keeps seeing little bugs scurry across the floor comes into your office, let’s assess for Lewy body, as well as Parkinson’s and Alzheimer’s.

Let’s keep going.

“By dividing the symptoms into cognitive, neuropsychiatric, movement, autonomic, and sleep categories, a comprehensive treatment strategy can be achieved.”

Yes!

“Management decisions are complex, since the treatment of one set of symptoms can cause complications in other symptom domains. Nevertheless, a comprehensive treatment program can greatly improve the patient’s quality of life, but does not alter the progression of disease,” wrote Boot.

That’s what I’m talking about.

Let’s continue.

“Dementia with Lewy bodies  is an under-recognized disease. The diagnostic criteria have low sensitivity (12 to 32 %) and high specificity (>95 %) [1], so many cases are not diagnosed,” Boot  wrote.

So many cases are not diagnosed. Did you understand the explanation in the  that sentence? The thing about the criteria having low sensitivity and high specificity?

Me neither.

Onward.

“Parkinson’s disease dementia (PDD) accounts for a further 3 to 5 percent of dementia cases .”

That’s on top of that 20 percent. (But of what? Need to find total number of dementia patients to put 20 plus 5 percent  in context.”)

“Both DLB and PDD are due to the pathological accumulation of alpha-synuclein.” Know this already.

“But patients with parkinsonism for 1 year prior to cognitive decline are classified as PDD [4].”

So they have all these  umbrella diseases based on the excess of alph-synuclein AKA as Lewy bodies. And they have to make their educated guess on whether it’s PDD, LBD or DBL,  or PD, or whatever, by which symptoms are showing and when, in what sequence, did these symptoms start showing.

Now here’s the kicker, and this is why everyone needs to be able to navigate the system as a patient or caretaker.

“Cognitive decline and parkinsonism are insidious, so the distinction can be difficult to draw and may be influenced by the subspecialty interest of the diagnosing neurologist (for example, movement disorder versus behavioral neurology) [1, 7]. Data on the relative frequency of DLB and PDD may be similarly affected by this subspecialty referral pattern. Whether or not the distinction has treatment implications is difficult to determine.”

So what do we know? We don’t know the cause of Lewy.  We don’t know of anything that will cure Lewy or slow its progression. We don’t know how to predict its speed or debilitation because ‘everybody is different.”

How many Lewy cases are out there? I want to know. Docs and patients work together to get diagnoses early and often so we can study this disease. Break down silos between memory specialists and movement disorder experts. They should be in the same place, same building, same floor, same parking deck.

Patients be patient but pressing. Time is precious.

I am channeling my focus on improving the treatment and getting more research based on the words of numerous patients and caretakers with a brain disease who have reached out after my public story. My own situation is working well so far.

Getting the Parkinson’s diagnosis first  was not unusual for Lewy body patients for reasons I’ve pointed out many times. I have a neurologist who has helped me get to the right balance of medications to treat Lewy. So I’m all right for now, just fine.

Bye. Heading out for nachos.

To leave a comment on this or any blog post, click on the post’s title and scroll to the bottom. To read the full report click here.

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How the heck am I doing?

  • I get asked all the time how am I doing. I guess everybody asks everybody that as an informal greeting. But since I came out publicly with my degenerative brain disease called Lewy body dementia, both the question and answer take on an added layer  of significance.

Sometimes I say ‘fine.’ But Catherine has trained that answer right out of me. Those who know my wife know that she responds to people who say they are fine by saying: FINE stands for Frustrated, Insecure, Nervous and Emotional.

So how am I doing?

Not fine. I mean not Catherine’s fine. I feel pretty good. Most of the time.

My disease affects 1.4 million Americans and is the second leading cause of dementia after Alzheimer’s. There is no known cause or cure. Average life expectancy is 5 to 7 years after diagnosed. I am 58 and about 15 months past my diagnosis of Lewy.

So I am not fine. Or, I am indeed Catherine’s FINE. Some of the time.

You could say my awareness that something was wrong with me was nearly two years ago. The key indicator was that my arm was involuntarily pulling up into what Parkinson’s patients recognize as the gunslinger’s position, near where your holster would be if you had one.

So in August of 2016, it was no surprise that when we went to the doctor and neurologist that we came home with the diagnosis  of Parkinson’s.  I say ‘we’ because Catherine is so interwoven into the fabric of my being and is taking this thing on at my side. And so are my daughters, and my friends and my employer and my… well you get the picture. I have a lot of people who care for me.

But other things — the advantage of hindsight and lots of research — led to other things. I had been having some memory problems for a while, also sleeping problems and  also anxiety of the likes I’d never had. This led to a psychological evaluation, which led to the conclusion that while I was no Einstein to begin with, I appeared to have lost some cognitive function. Enough that the diagnosis came back Lewy bodies, which simply means that i have been having cognitive problems from at least the onset of the gunslinger, and probably before that.

With Lewy body patients, an initial Parkinson’s (mis)diagnosis is not unusual. In the brain, the disorder is practically the same malfunction in Parkinson’s and Lewy’s patients. An overabundance of proteins from who knows where are killing neurons which are pretty vital as part of the brain’s communication hub to the rest of your body and mind.

It’s like an airplane (slowly) losing it’s ability to communicate with air traffic controllers. Oh, and automatic pilot quits working as well.

According to neuroscientists most folks are losing about 7,000 brain cells a day. Even though you have 100 billion brain  cells to start with, if  you start losing millions to the alpha synuclein hordes, it’s going to wreak a little havoc.

So Lewy is similar to Parkinson’s and some doctors go so far as call it a type of Parkinson’s. Here’s the difference, Lewy by definition affects a person’s mental faculties. There’s dementia all the time with Lewy. Not so with Parkinson’s, although eventually Parkinson’s patients, if they live long enough, may show dementia, as do many people when they age. Many Parkinson’s patients present symptoms of uncontrolled movement or shaking, like Michael J. Fox.  That side can come with Lewy’s as well.

Here’s the Lewy Body Dementia Association’s explanation.

In a way, it’s all semantics. There is no definitive tests for these diseases until we open up the skull and take a look.  There’s even research that maybe its not the proteins that are killing the neurons after all.

I do know there is no clear prediction on my future. I know I may not have much more time. But I might be around for a while and the medications, which are not a cure, keep symptoms tamped down.

It’s a disease or an umbrella of diseases that has different effects on different people. The key is figuring out how to treat it.

After years of suffering and misdiagnoses, Robin Williams killed himself. When they looked at his brain, they found it was full of this flopping protein, Lewy bodies.

So we need awareness. We need more research. We need it urgently. Someone who has Lewy who is misdiagnosed with Alzheimer’s may face serious harm or death if given certain medications to treat symptoms of Alzheimer’s disease — such as some anti-psychotic drugs.

So how the heck am I?

I’m happy to be able to write this to get the word out.

I am happy to see people who care.

I am happy to care for people while I still can.

I am sad to see tears and am happy when they turn to smiles, in the moment.

In this moment, I feel as good or better than I did a year ago, thanks, I believe, to finding the right balance of medications.

I’ve written that this blog is therapeutic. I am counting down my 678 records as I go along. My goal, or rather MY PROMISE, is to finish off those records. I haven’t counted recently but I’m over 90.

I believe I am close to 100.

I believe I am close to.  I believe I  am close. I believe I am. I believe I.  I believe.

I.

How the heck am I?

Really, I’m fine.

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My Vinyl Countdown Numbers

I’m counting my 678 records down and reviewing them one by one, racing the progression of my disease, Lewy Body dementia.

As I finished off the B’s (finally) this weekend, I thought I’d give a brief update on the numbers.

I have reviewed, by my own uncertain tally, 71 albums. That means 607 to go.

My total post number is 82.  Some of those posts were not ‘countdown’ reviews but intermissions, interjections or just my impressions. (It’s all right to have a good time, it’s all right). Oops. Diversion.

Yes, the B’s were a long haul.

Headed toward my vinyl countdown

Of the 71 albums reviewed, 12 were A’s. I counted. That means there were 59 B’s. Wonder why so many B’s and so few A’s; maybe it starts with the influence of the Beatles. Only to be followed by Beat Farmers, Bongos and Bread.

So, 71 albums reviewed since Sept. 16 when I posted my first two reviews, King Sunny Ade and Aerosmith.  Back of the napkin math, I’m knocking out about  20 albums a month or 5 albums per week. (Remember this is on top of some of my other essay  attempts.For example, this post will not count as a review toward my countdown.)

So at 20 albums a month that means I’ll need about 30 more months to get to Zappa or Zevon or Zzzzzz, whomever may be waiting. I am going alphabetically by artist, realizing (now) that ultimately leaves us  in the end with a Z to A listing on the blog. Oh well, things are a little upside down anyway.

So let’s see what we see in  the C’s. I see perhaps some CCR, some CSNY,  , ample EC, and some more obscure  ones you never even heard of like Crack the Sky or Lee Clayton. But guess what, there is likely going to be a song or album or artist  on this blog that (eventually) may deliver the soundtrack of your life. That’s how much I believe in the power of music.

Brett L. https://www.flickr.com/photos/brettlider/72767718/in/photostream/

Speaking of such an album or at least a contender for being one of my favorite artists. I’m going to drop an ‘A’ album review here soon.  The  A artist, Joseph Arthur, and this unusual vinyl 2007 record called Temporary People, was misfiled. I rummage through my records quite a bit and sometimes do that. So it’s catch up time on My VInyl Countdown. The ‘new’ vinyl record given to me several years ago by my daughter Hannah and her husband Tom, who knew my fondness for Arthur. Hannah and I actually went to see him in San Francisco at the Bottom of the Hill. Before that my wife Catherine and I saw him in downtown SF, at the Great American  Music Hall, from a table at the front.

So stay tuned for that post. Meanwhile, check out this Arthur song from his earliest days as  the former Ohio native and Atlanta record store clerk does one of his early songs, which was  resurrected by Martin, the Coldplay guy, Stipe, the REM guy and Arthur to raise money for Hurricane Katrina victims.

More later.

 

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Is there time?

Salvador Dali, Persistence of Memory

Tell me if you do this. I set clocks ahead of the real time. For example, if it’s 10 a.m., the clock by my bed will say 10:09.

Same in the car, though it might say 10:08. I’m already feeling the smiles of recognition as you read this.

I, and you who do this, are trying to trick ourselves.

When you look up at the clock you go: Oh my gosh it’s 8:15, I have an 8:30 meeting. Adrenaline kicks in. Then you remember don’t you, Groundhog Day suckers, that it’s actually only 8:06. Just doing that calculation stimulates your brain again. You’re up.

(Some people do do this, right? I’m just hoping it’s not some LBD symptom and everyone is out there going,  ‘All righty then.’ Onward.)

People familiar with this blog know I have been diagnosed with Lewy Body dementia, about a year ago. It’s a degenerative brain disease that affects movement and memory, to varying degrees in varying people. There is no cure and no known cause. But the sad fact is that the average lifespan after initial diagnosis is 4 to 7 years, according to the Lewy Body Dementia Association.

I have time, but probably less of it than the average 58 year-old.

So given this unexpected deadline in my life, I’ve been pondering some big questions about mortality, death, life and existence. You can imagine I’ve been a big hit on the holiday party circuit.

PARTYGOER: Hello Mike, I’m Jim. I am your next door neighbor’s friend’s cousin.

ME: What’s time?

PARTYGOER: (Looking at his watch): Oh it’s 7:50, Ten to 8.

ME: No! What is time?

(I enunciate with dramatic impact on the ‘is’.)

PARTYGOER: (Looks at me and squints after staring at his watch. He knows what time it is, alright: Time to go.)

So forgive my navel gazing. You may want to stop here because I dig myself into a black hole on this one as this blog post goes on.

You may  not have time to read about time.

I worry I don’t have time to write about time, but am pulled by a great compulsion to understand more than I understand now. I know this has been studied some by Albert Einstein among others. But let’s just say I’m going to approach this without that extra burden of knowing anything at all about quantum physics.

I don’t have time.

How many times do you hear that? Or say that? What does it mean?

Doesn’t everybody have time? At least up until the end of life. So it’s not that we don’t have time, it’s just that we prioritized the time in a way that there is no more of it for something else.

[Hint No. 2, initiallythe  poet and the character,]

But you could make time? You could cancel your 2 p.m. meeting to have lunch with your third grade classmate, whom you haven’t seen in decades, since, well, third grade. He’s just passing through. It’s your decision to make time or not.

Making time for lunch doesn’t mean you actually created any more time; you just replaced one time consumer with another. (BTW, go see the snotty little third grader, he might be interesting. This actually happened to me in Florida and I didn’t make time. Felt guilty for 20 years.)

People after long boring meetings (not at our work place, of course) have been known to say, ‘Well that’s an hour of my life I’ll never get back.”

Buck Chavez, a coach and semi-legendary basketball star in Marin County, Calif., was forever hustling everyone to get our Saturday pick-up games going. He hated the long process of shooting for teams. “Time is one thing they don’t make any more of,” he used to loudly proclaim.

My problem, starting with not having a degree in quantum physics, is that I always want to peek behind the curtain.

How does time work? Einstein has posited that time travel is possible, in theory, but there are so many paradoxes that make it seemingly impossible.

A chat website on a NASA.gov page featured a timely discussion about time travel, saying we are already traveling through time at the rate of 1 hour per hour.

It’s bending it down to something like 50 minutes per hour where time travel would be possible. Is that right? Kind of like messing with the time on your alarm clock. Or maybe that should be 70 minutes per hour? I’m already confusing myself.

Did I mention that I know absolutely nothing about quantum physics. Or the theory of relatives. (Although I do know that sitting in a dull meeting makes time seem unbearably slower than a vacation day on the beach.)

Here’s how the NASA folks on the website explain time travel based on Einstein’s theories.

Say you were 15 years old when you left Earth in a spacecraft traveling at about 99.5% of the speed of light (which is much faster than we can achieve now), and celebrated only five birthdays during your space voyage. When you get home at the age of 20, you would find that all your classmates were 65 years old, retired, and enjoying their grandchildren! Because time passed more slowly for you, you will have experienced only five years of life, while your classmates will have experienced a full 50 years.

So, shoot, keep up the support for Lewy Body dementia research, but I’m keeping an eye on time travel research as well.

A colleague of mine, AL.com and Reckoning columnist John Archibald gave me a book called Einstein’s Dreams. It’s a well regarded fictional collection by Alan Lightman. They are short ruminations of what Einstein might have been dreaming in 1906 when he worked at the patent office in Switzerland, pre-E=MC-squared.

One essay  asks us to imagine a world in which people live just one day.

A lifetime is compressed to one turn of earth on its axis, or the rotation is slowed so much that one revolution of the earth occupies a whole human life.

(Hmmm. It doesn’t say anything about dog years . Sorry Gus.)

So one day, one life. That means, the book says, “a man or woman sees one sunrise, one sunset. In this world no one lives to witness the change of the season.”

On the other hand, suppose people live forever, the book says in another essay. Each city would divide into two groups, the Nows and the Laters.

The Nows, knowing they’ll live forever want to take advantage of everything, learning new skills, meeting new family members (think of your Christmas list as your grandchildren and their children live forever and procreating more relatives), trying new jobs, etc. Meanwhile, the Laters sit around and drink coffee and say, eh, I’ve got plenty of time to get to that. Sounds a little like the dichotomy I set up in  Random vs. Straight Playlist.

I think I would be a Later, kind of like I think I lean more toward Random. That said, I think right now, I’m a Now.

So science has just enough answers to make it more confusing — and tantalizing.  Art, like the Einstein Dreams novel, can help us understand. Or confuse us more.

Who better describes the bittersweet nature of passing time than T.S. Eliot in The Love Song of J. Alfred Prufrock:

In a minute there is time

For decisions and revisions which a minute will reverse.

For I have known them all already, known them all:

Have known the evenings, mornings, afternoons,

I have measured out my life with coffee spoons;

That’s what time is for us, I think. Measuring, counting minutes and longing for those moments long ago that we see frozen in photographs.  And I think it is unfortunate that we see time as a measurement of a thing we don’t really understand.

For us, it’s not really what time is — but it’s what the clock says. Even if you change the time 9 minutes ahead on that clock, that doesn’t mean time changed. It may have momentarily changed your perception of time. But that was an illusion.

Kevin Harris in a forum on the Christian website Reasonable Faith said in a posting:

I think timelessness of God and his creation is the best explanation of all the evidence. True existence seems to be the eternal ‘now.’ Real time is imaginary; the mind imagines it. Imaginary time is what seems real to the human mind. But the human mind is simply observing motion and changes in the physical universe.

 Imaginary? Or a signpost to the truth.

The Flaming Lips in ‘Do You Realize?’:

And instead of saying all of your goodbyes, let them know
You realize that life goes fast
It’s hard to make the good things last
You realize the sun doesn’t go down
It’s just an illusion caused by the world spinning round

Counting down my 678 vinyl records before I die of brain disease.

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I Have to Laugh (To Keep from Crying)

I’ve talked to some of my friends, jokingly, suggesting I do a ‘Lewy Mike’ stand-up comedy routine.

Here’s my routine, very much still in the early stages:

I walk out onstage to polite applause.

“Hello,”  I say to the rapt, but small audience in a downtown comedy club.

“I am Mike Oliver and I have Lewy Body dementia.”

Scattered chattering, facial contortions of confusion, all  related to questions along the lines of  what the heck is  Lewy Body dementia. I could have gone to see Star Wars over this stuff, a member of the audience might have proclaimed.

So I explain.

“It’s kind of a cross between Alzheimer’s and Parkinson’s.”

Oh, the audience murmers, they’ve heard of those devastating degenerative brain conditions.

“And so I ask how many of you here  tonight have  Parkinson’s or have a loved one with this disease.

“Let’s get a show of shaking hands.”

I peer out and notice a handful of hands in the air, shaking. All right I say.

“Now those with Alzheimers:”  (long pause)

I  look around. “Well, just forget it.”‘

Um. (sporadic applause, low level booing. Mayday. Mayday. The blood is leaving what’s left of my brain.)

I step up to the microphone. “Uh, can’t you see,” I plead with the audience.

“I’m dying up here.’

Well, guess that is a little dark.

But it’s dark humor, a way to chase away the blues demons. I’ve tried this act to some select friends and we’ve had a good  laugh. I want to let them know this condition, as utterly horrible as it is, and I’ve cried after meeting those in late stages knowing that may be me–it will not  stop the love and laughing that I adore in my life.

Hence my blog www.myvinylcountdown.com

I didn’t plan on demonstrating extremely confessional naked emotions here. But yes, there will be some unmasking, some stripping down.

I hope you all will continue to bare with me.

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My Rx for Dementia

I’d like to put in a bottle what I am doing to fight my dementia for everyone facing what I’m facing.

On this blog, I’m counting down, in photos  and words, the 678 vinyl record albums I collected mainly in the 70s and 80s before CDs and digital took over. In doing so I am reconnecting with my past, and my memory of it. I’m finding forgotten memories. I’m rediscovering good (and bad) music.

And I’m loving it.

Every day is like Christmas to me. What is the next one to review? What surprise and memory will it bless me with. The discipline of writing connects me to my mind in a way beyond speech.

I’m doing this in addition to traditional drug therapy, on which I am   combining a carefully calculated  mix of Alzheimer’s and Parkinson’s medications. That’s because my disease, Lewy Body dementia has symptoms that resemble both degenerative brain diseases.

The problem is that Lewy Body, despite being the second leading cause of dementia after Alzheimer’s, is not well known. Early diagnosis is a key to getting on the right meds because some anti-psychotic medications, used in Alzheimer’s treatment, are contraindicated and dangerous to the Lewy Body patient.  There is no cure, and its cause is unknown.

I am better off than I was a year ago when I was diagnosed. I felt miserable. I felt like I was antsy all the time. My arm would unconsciously slide up my side in the so-called gunslinger mode, a classic Parkinsonian symptom. But I had also had insomnia and REM sleep disorder which caused me to act out dreams, sometimes thrashing, punching and kicking. Not so great when you’re sharing a bed. Those are classic Lewy Body dementia symptoms, including waking hallucinations.

I believe I’m feeling better now because of the medication. But I believe I may also be doing well because of the value that blogging has brought to my psyche. It’s given me something fun to do while keeping my dexterity refined through typing and my memory honed by remembering and writing about remembering.

Will the meds slowly quit working, as frequently happens? Will I be unable to type at some point? That ability already fluctuates. My writing is often more coherent than my speech, I know that. Just an honest observation. In live conversations with people, I often forget names or crash my train of thought. I have to thumb through the bins in my brain to find the right words.

It’s one of the reasons I came out publicly with my disease because I want people to know what’s going on when they talk to me and not be afraid to ask me how I’m doing living with dementia. “Very fine thank you,” I say. “And what’s your name again?”

My friends and colleagues and many others I don’t know so well know it’s no sweat that I can’t remember something right away.

So long before the dementia diagnosis I had this idea of counting my records down and selling them one-by-one on eBay. It was, to be honest, a good argument over the years to thwart the pressure by my wife, Catherine, to get rid of the precious vinyl. But as you are hearing it is becoming much bigger than that. It’s a treatment. And it is also a written legacy that my loved ones can read to get a dose of me after I’m gone. If they want that dose. My beautiful daughters, young women, Hannah, Emily and Claire, don’t seem too too interested in the blog now. (Whaddya mean  you don’t  want to read my 1000 word dissection of the Allman Brothers’ influence on Southern rock and jam bands?).

in the future, something may resonate (or not). But i would like to leave something where they can remember and know who i was before i become not who i am.

My records represent many hours perusing record bins and many quarters and dollars, usually bought used or as cut-outs. They range from R&B, classic rock, hard core country, punk, funk, soul, New Wave, comedy, classical, folk, Americana, reggae, alternative, and jazz, both old school and modern.

Since I started in September, I have done 64 record reviews in 67 posts. Some of those posts had no album reviews as they were about other things I’m trying to write about such as basketball, journalism, and Lewy Body dementia. Sometimes, especially if I have multiple records from the same artist, I review them in the same posts.

So I have 614 reviews to go, not counting new vinyl additions my family and friends are giving me in a loving gesture to add length to the reduction in my life (and its quality) that Lewy Body will try to make happen.

That’s because I have vowed to finish this blog out.

I’m loving it.

Counting down my 678 vinyl records before I die of brain disease.