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WARNING: All those with Lewy body disease, beware dangerous fainting spells.

The first one was the scariest for me. I blacked out coming down our steep hardwood floors and rolled to the bottom. Just last week.

My luck was that it was only a four or five stair roll. No major damage to my 60-year-old body except for a n inch- long gash on my knee. I was lucky.

Since then — about a week ago — I have blacked out three times with people catching me in their arms. So, one tip: Stay around people.

Seriously, nearly everybody has this dizziness due to low blood pressure. It happens sometimes when sitting a long time and standing up quickly. You get lightheaded. Dehydration can play a role. But Lewy body dementia which has been linked to fainting condition called orthostatic hypotension.

I touched on this in an earlier column last week but I wanted to give it a little more attention.

I’ve had Lewy body dementia now for about five years and previously have had that happen to me. But that was once in a blue moon. I’ve had it a few times in my life — orthostatic hypotension — but it happens, you’re dizzy and it goes away. But in some LBD cases it can be a thing to warrant extra attention. These falls are dangerous.

I’m going to do more research, and talk to my doctor about it. But until then I’ve developed some strategy to save myself from flopping on my face. Before I get up from a long sitting or from bed in the morning I start breathing deliberately and deeply. I’m not hyperventilating. I am just aware of taking my breaths.

Sit there poised to get up but don’t — just breathe for another few minutes. Stand up using your arms on you knees or railing. I stop and keep my hands on knees continuing the deliberate breathing.

Here’s the thing. If this is going to happen to you it might happen as long as 10 minutes after the standing up. My faints were all several minutes after I thought any potential episode had been averted.

So the key part of this is time. Keep breathing and now standing lift one leg up (holding onto something) and then another like you are slow marching in place. I also put my hands on my head to open up my rib cage. Don’t get in a hurry. Stay there as long as you feel any cobwebs in your brain. Remember to drink plenty of liquids. I drink water, vegetable drink and sports drinks, usually sipping on one or the other all day long. (Coffee, too, but shhhhh, I don’t belive that’s going to help you on this one. Coffee is helpful to me with Parkinsonian symptoms like body unease, tremor and clearing my mind.

Another key to this thing is bringing more attention to it. Additional news on top of this information includes OH — the dizzy knockout symptom — might also shorten the lifespan of a Lewy body sufferer. After dealing with LBD all week, it was the last thing I wanted to hear. Maybe it is that the OH is killing people with falls at a rate to affect the numbers. More investigation needed and I’m on it.

So, if you see a guy ambling down the street one day, wearing a helmet — that’s me.

For more information go to LBDA.com the website of the Lewy Body Dementia Association. Please talk to your doctor if these spells are frequent. Remember I am not an expert and can’t say that anything I said above will work for you. I’m just operating on my experience as someone who has been living with LBD for 5 years.

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My life with Lewy, from the inside out

Those of you following my journey on www. myvinylcountdown.com have learned more than needed or ever wanted about 1970s -80s rock music and a relatively anonymous disease that kills you.

Amid the obscure and the famous, amid the 7 stages of Lewy body, amid the stories of basketball and the Beatles, I wanted to write more about where I am today, now.

Whew! That makes me breathe deeply just typing it.

This has been a hard column to write.

[See AL.com version here]

I started it as a journalism story. So, by God, as a relatively healthy 50-something, I was going to research Lewy body and fight it. I learned some key facts: On average you have 4 to 8 years of living after diagnosis. Lot of variables in that calculation so i use it as a guideline –nothing to make plans around. I learned that even though Lewy affected 1.4 million people in the United States, no one much knew about it, even doctors.

I was diagnosed with Parkinson’s in July 2016 and then with Lewy in November of that year. It’s anonymity I think is fair to say hinders a proportionate amount of federal dollars to research it.

I learned that it seems the same kind of protein messing up brains of Lewy body patients were the same messing up those with Parkinson’s DIsease. Symptoms overlapped. Alzheimer’s, on the other hand, plagues the brian with a different kind of plaque. Alzheimer’s does however have some similar symptoms: memory and cognition failure. And evidence of AZ is often found in patients with LPD.

I will say, though I’ve read and heard anecdotally that LBD doesn’t usually have the ‘whiteout’ tendency of Azheimer’s regarding memory. LBD come with days that seem normal only to go dark again. Again my observations and readings suggest LBD patients can be a bit more argumentative and aggressive than Alzheimer’s. Some memory care centers won’t take Lewy patients because of these issues.

There is some good work in the trenches out there. UAB is doing some of it. But the research of Lewy body dementia nationwide is in its infancy, I believe.

I didn’t want a write a big old dissertation about that.

I also hope it doesn’t sound like I’m on my last lap. This is not meant to be a bye-bye column .

It’s not a column about naming names, pondering the future of journalism, or Mike’s best of music reviews and Lewy posts.

I don’t want to die anytime soon, but we know not the hour. And I do want to keep telling you what I know. Something is happening, for sure with me. From the inside out.

The difference between now and, say, two years ago, is an accumulation of small things, subtle things. Remembering where I set something down sets me off on a 20-minute search. Trying to remember which button or combination of buttons to push leaves me staring at my computer — or the wall — for a zombie moment. A momentary loss of balance. Or, falling.

Standing up quickly can lead to dizziness, shakiness and losing consciousness. I feel down the stairs the other day after passing out. Luckily it was a four or five stair roll leaving me with a relatively moderate gash on my knee.

The condition is caused by low blood pressure. When we sit, our blood pools to the butt and thighs. Normally when we stand up that blood pressure has beat us to the brain and is lathering it in blood for oxygen.

It’s the real deal. Because falling is one of the biggest LBD -related cause of deaths. Choking is another, as your autonomic system is under attack.

Your autonomic system is like a perpetual cruise control allowing you to breathe, pump blood, even salivate ‘automatically.’

I’ve written a lot of columns and spoken to a lot of groups about Living with Lewy.

The reaction I get is many have never heard of the disease, which attacks the brain bit by bit. Like an appetizer for Hannibal Lector.

Most haven’ heard of it. This despite it being the second largest type of progressive dementia after Alzheimer’s Disease.

My pain is classic angst. Will my (children) be OK? How will my truly beloved wife be able to live without me? Will she know what the ebay password is?

I ‘m now having doubts about finishing this project –myvinylcountdown.com. Four years and I still have more than a hundred album reviews yet to finish it.

I realize how dumb and strange this blog must look sometimes writing a post about Stephen Hawking’s view of the afterlife followed by a review of Bobby Sherman singing Julie Julie Julie do ya love me.

But there has been signficant change. It was actually likely a series of micro changes as a couple billion brain cells do battle with unwanted alpha-synuclein proteins.

Spoiler alert: The proteins win.

But as I said. Changes accumulated. My memory worsened, although thank God I’m still, for the most part remembering most of those with a role in my life.

I had some episodes where I’d break from reality. Nothing serious (sometimes reality is overrated). I usually could locate the logical rational piece of my brain and somehow steer it back to clear water. I developed a healthy case of Orthostatic hypotension, a form of low blood pressure.

I’ve learned tostand very closely and wait for a wave dizziness or near unconsciousness. blow by.

See, I was going to give many tips like this. But the brain cells that held them got eaten. By bye list.

So back to the bigger noticeable change. Different patients have different experiences. Our endings will be different. I pray for a peaceful death for those with the disease. For me? I’m bargaining for time. I’m bargaining for time so I may be with family members and friends longer. I’ve been rewinding my life for the past few years, remembering wild and crazy times with wild and crazy people and laughter and the roar of the ocean and sitting around campfires. And being scared sometimes; and worrying too much; and hurting people. I said I’m not going to make this a regrets column.

We’ve been beating ourselves up for those for too long anyway.

Couple of years ago I wrote a column called “Rub your dog between the ears while you still can.”

Gus, the family’s 14-year-old mixed poodle, is sitting right here as I write.

I’m rubbing his ears. And rubbing my eyes.

Oliver is a columnist from AL.com who writes often about Lewy body dementia. He also loves vinyl records and uses his blog to list them and write about them. He has finished more than 500 platters (haven’t used that word for records in a while.) He is racing against time to finish those before he dies. Stay tuned.

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Rascals — 228

ALBUM; Time/Peace Greatest Hits

MVC Rating; 4.0/$$

The “blackest white group around.” That’s how they were described by one rock critic in the 1960.

These five young Rascals from New Jersey — with their ragged energy -hooky radio friendly songs — they made a good case for that description.

Songs like ‘Good Lovin,’ rocked. Beautiful Morning was a feel good song, and Groovin’ took it down a notch. This is a nice greatest hits album and the place to go if you want to check out these Rascals, led by the soulful voice of Felix Cavaliere.

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Rubber Rodeo — 229

ALBUMS: Rubber Radio (EP) )1982

MVC Rating 3.0/$$, (1982)

I will say this, thousands and thousnds upon thousands of inexplicable rock star names are out there and this is one that I can’t even scrape up a guess.

Rubber Radio is this one one , which debuted with ‘Rubber Rodeo in 1981.

Hmm. is there a Plastic Playgrounds?

Belushi and Dan Akroyd popularized an old soul 1950s hit –‘Rubber Biscuits,’ –and of course there was Birmingham singer Eddie Kendricks known for his hit record , ‘Rubber Band Man.’

Rubber Rodeo, on the other hand came out as a New Wave cow-punk band that was sweeping, nation, well maybe dustbrooming .the nation.

Despite some good press and a couple or so albums, they never bounced back.

Bounced back? From what? Well I was making a little joke there, but if you must know, rubber head, in the cow punk genre they just weren’t as good as Jason and Scorchers, Rank and File, Danny and Dusty and, got to mention some of X’s work..

And they were from Boston.

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Rank and File –230

ALBUM: Sundown (1982)

MVC Rating: 4.0/$$$$

This is a good album that didn’t get played that much — not just by me but collectively the record buying public . But it launched some careers and served as a bridge between the love of country and western music and punk rock.

Lot of groups made a stab at it with varying degrees of success — the Beat Farmers, the Long Ryders (for whom Escovido played for a while., Jason and the Scorchers, and Rubber Rodeo.

Rank and File played it a little straighter than the aforementioned groups, whose songs dripped with irony. But Rank and FIle would b a nice find in a used record store.

If you iike country, rockabilly and a pinch of punk, this is up your alley.

Rank and File had moderate success, Guitarist Alejandro Escoveda put out some excellent solo abums and burned the house down at Bottle Tree (now defunct) in Birmingham some years ago. I thought it was one of the best small venue Friday night live shows I had seen.

Standing room only in a packed room the size of a middle bedroom, Escoveda let it rip.

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REO Speedwagon 232, 231

ALBUMS: High Infidelity (1980). A Decade of Rock and Roll 1970 – 1980

MVC Rating: Infidelity 3.5;/ $$’ Decade of Rock and Roll. 4.0/$$$

Kevin Cronin (with the hair ) and me (Mike Oliver) a photo and discussion after the show about Lewy body dementia at a Lewy conference in Las Vegas.

OK, i’ll start something: Journey or REO Speedwagon?

Which one was the better band?. They both suck right, ?

Well, no. How can you even ask the question? Journey had better songs. Journey was the perfect rock date band: Journey was more famous and was worldwide. Man, what’ are you even talking about?

I hear you .

My family moved to Indiana, trading red clay dirt clods for cornfields and a famous car race My new Indiana friends were very much into REO Speedwagon and if you think REO ws a cheesy Top 40 band listen to some of their earlier albums, they rocked so hard the front row had their eyebrows burned off.

Of course that is obviously not true but I’m sure there were ringing ears.

Now flash forward a couple of decades plus. I was regional editor or projects editor for the Oakland Tribune., My co-workers of a slightly younger age who grew up in the SF Bay Area Journey was the thing. Not even a guilty pleasure but an awesome hard rock band that made REO look like hayseeds. (They’re behind the corn).

Let’s look at the tale of the tape, quite appropriate when you consider how many cassettes these guys sold .

Super hard rock in Speedwagon’s earlier days.
s

Journey, over a 40-years career, has been one of the greatest classic rock bands of all time. The band has released 23 albums and 43 singles since 1975 and has reached worldwide album sales totaling more than 75 million. .

OK drop the Mic. I

I like this early one by Journey:

I didn’t think their resume was THAT good. And I like them. Just so we give ’em a fair shake, I’ll find REO’s numbers. Those are oustanding numbers for Journey probably putting them in the top echelon for 70s and 80s bands..

OK, here we go with the REO number. (Both of these nuggets of info, supplied by Wikipedia and Google aggregation abilities.

Over the course of its career, the band has sold more than 40 million records and has charted 13 Top 40 hits, including the number ones “Keep On Loving You” and “Can’t Fight This Feeling?.

Not bad. But this was exactly the music I was transitioning out of at about 18. Played them again for this piece and yes both Journey and REO Speedwagon rock!

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Peter Himmelman weighs in on George Floyd with honest, brutal truth

NOTE: Peter Himmelman, one of my favorite singers , hails from Minnesota. He emailed this essay to fans.

By Peter Himmelman

I have been lying in bed this morning, watching, and re-watching an unarmed man die. Let me rephrase that: watching a man as he is brutally, sadistically murdered. Let me rephrase that once more: watching a man—a human being named, George Floyd—as he is tortured on camera.

I have been listening over and over, to the agony of George Floyd’s final moments. “Mama, Mama,” he wails. “I can’t breathe, I’m dying.” And of course, George Floyd wasn’t acting—he did die; near the front wheels of a police cruiser on a Minneapolis street. He was brought to his death by a man, and his team of pitiless henchmen, who was sworn to serve and protect him.

Now imagine, if you will, a large, strong man’s knee crushing your own neck and pushing your own face into the pavement. Imagine knowing with certainty that you will not survive this. Imagine too, that in your last moments on earth you are given the strangest, cruelest, most impossible request: the man who is crushing your neck with his knee orders you to, “get in the car.”

But of course, it’s an absurdity, you can’t get into the car. You can’t move. You can’t even breathe. The man who is killing you is asking you to do something you are utterly incapable of doing. Even as you are dying you are starkly aware that the man’s request is insane. And so, without air, without mercy, and without the remotest semblance of justice or humanity, you pass painfully into the next world.

Now, this may be even more difficult:

Imagine George Floyd as someone other than a faceless stranger. Imagine he is your brother, your best friend, your co-worker, your father, your son, your dearest, your beloved.

And if you imagine anything else today, perhaps you can also imagine—as I have—that an awakening of the most fundamental, most personal level needs desperately to take place. An awakening whereby we each make a solemn vow to eliminate the bestial tendency that lives somewhere, however minutely, in each of us. A dark tendency, which seeks to undermine our ability to see the very humanity of those who may look differently, love differently, speak differently, believe differently than ourselves.

Through our long history, a Civil War, and untold suffering, we still have not found the power to see the “other” for what he or she is: a sacred being.

Without that power—both on a personal, as well as a governmental level—we will, in some respects, still be capable of grinding our own knee into the neck of another, still, in some sense, be capable of ignoring the bitter cries for what is merciful, and what is just. Still in some microcosmic way, perhaps, be capable of even the worst inhumanities.

When will we be willing to change?

Now, imagine that.

—

FROM MIKE: Check my site for more Himmelman. Or go to his website www.peterhimmelman.com and here

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Hallucination update

The article below is not very new but it brought up a fascinating and often disturbing side effect of Lewy body demetia: Hallucinations.

I’ve raised this question before but I wonder why people with Lewy body and Alzheimer’s and to s.a lesser extent Parkinson’s have certain themes or touchstones. There have long been reports of hallucinations involving animals, cats dogs. insects running around the room; a person behind you whom you can only see out of the corner of your eye.

I was getting these in the early days of my diagnosis and they have declined a lot — sometimes depending on circumstances, such as being tired, or missing or late with a medication. I’ve had just a few very vivid hallucinations. One involved looking out my back window and seeing a group of little girls say 4 too 6 years old having a tea party in my back yard. I literally had to rub my eyes to rid myself of the hallucination. It wasn’t a bad or scary hallucination. Another one involved several ghostly figures entering the confines of my man-cave and sitting down nest to me. I had a weird feeling of calm mixed with fluctuating fear. But I started talking to them — making son-in-law nervous as he observed me from 10 feet away or more carrying on a conversation with myself. But what this technique does is ground yourself, by talking and bringing your world back into play. I have learned to make most apparitions go away and leave by talking to them, a friendly little chat and then tell them I want to watch a little TV

So, boiled down I wonder what it is in our brains that make so many people see the same types of things, dogs (puppies), cats and kittens, rodents scurrying, insects crawling, people turning into cartoon like caricatures of themselves.

I saw a documentary the other night on hallucinogenic drug use and one of the key observations from those under influence sounds something like this: “I feel like we are all connected. I see it how everything is tied together. I see the system.”

Here’s the information, which I said is not exactly new. But I’ve seen this information out there in several different forums and has the ring of truth to it. Sounds like hallucinations can be a key indicator in making a quicker Lewy body diagnosis.

Early Visual Hallucinations Greatly Increase Odds of LBD Over Alzheimer’s

Visual hallucinations are a core feature of dementia with Lewy bodies, occurring in 32 to 85 percent of autopsy-confirmed cases. Individuals with Alzheimer’s disease also experience hallucinations, though to a lesser degree and typically later in the course of the disease. New research reveals the onset of visual hallucinations within 5 years of developing dementia increases the odds of pathology-confirmed Lewy body disease 4-5 times over Alzheimer’s disease.

Research led by Tanis J. Ferman, Ph.D., associate professor at Mayo Clinic in Jacksonville, FL, studied brain tissue samples of autopsied individuals with a well-documented history of dementia, and who had died within the last 3 years. This included 41 individuals with autopsy-confirmed pathologic Lewy body disease (LBD), 70 individuals with autopsy-confirmed Alzheimer’s disease (AD) and 14 individuals with Alzheimer’s disease and amygdala-predominant Lewy bodies (AD-ALB). Samples were also categorized by density of Alzheimer’s and/or Lewy body pathology using Braak staging. Questionnaires were sent to the next-of-kin, to learn at what age the person’s dementia started and the approximate onset of any visual hallucinations, misperceptions and misidentification of family members during the life of the person with dementia.

<FULL STORY LEWY BODY DEMENTIA ASSSOCIATION>

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Piece of my mind from COVID19 resister and Parkinson’ and Lewy body dementia survivor (blog version)

(This is an opinion column and intended to be funny. If you find it unfunny, then call it the truth.)

I saw my first piece of COVI-DEBRIS a day or so ago. A wadded up facemask of the surgeon variety, a shocking example of COVI-DEBRIS I might add.

I saw it lying right on the ground near a sidewalk as I was taking a walk.

So, here’s a person who is being safe and healthy wearing a mask, but then just tosses it, probably out of a car window.

That’s like topping off your breakfast of unsweetened Greek yogurt and healthy fruit with a Krispy Kreme.

That’s like pouring cola into a glass of Pappy Van Winkle.

Why, it’s like … a Deadhead sticker on a Cadillac.

All these thoughts went through me as I went to pick it up.

Pick it up? Aw heck no.

We can’t even pick up the trash anymore because it might be COVI-DEBRIS.

Thanks COVIDIOTS.

FULL STORY ON AL.com GO HERE

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If you don’t feel like you re seeing all my stuff?

My writings emanate from two places usually. My blog called www.myvinylcountdown.com Most of my writings are in there but not all and also there are different versions. The other place they start out are AL.com where if you search my name and find something like this:

https://connect.al.com/user/toniokroger/posts.html

Click on that and you have a nice flowing river of my stories. While I’m thinking of it, if you like my content in AL.com I would appreciate it if you would throw a little money my way, actually the company’s way, but tell ’em I sent you. It’s part of a campaign to keep us going. READ HERE.