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Sisters of Mercy — 108

ALBUM: Floodland (1987)

MVC Rating: 3.5/$$$$

I guess this is Goth. (Short for Gothic).

In the late 1970s in my high school in Georgia we had maybe five students who dressed all in black, used black eyeliner, black lipstick, dyed black hair, etc.

But I’m not really sure what Goth is. I mean is there a group of shared ideals beyond the fondness for black?

For me it conjures up images of medieval castles with gargoyles, Morticia on the Addams Family, the Rocky Horror Picture show, witches, dwarfs, the devil, and Igor. I’m letting my imagination run here.

They must only come out at night these days as I don’t see nearly as many folks rocking the Gothic gear as I did in the 1980s. Although, actress Pauley Perrette on the NCIS television program plays ‘Goth girl’ Abby, beloved by millions who watch that long running program. So maybe the real Goths on the street think the movement has gone too commercial and that’s why I don’t see them so much anymore? I don’t know.

This group Sisters of Mercy write darkly driven synthesizer and guitar rock songs about dreams of floods, and this corrosion.

From the song Lucretia My Reflection:

I hear the roar of the big machine/Two worlds and in between/Hot metal and methedrine/I hear empire down

The fact is, there are some catchy songs on here, even if it makes no sense lyrically. The whole album sounds like it was recorded in the basement of a dark, dank medieval castle.

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Cat Stevens/Yusuf — 115, 114

ALBUMS: Catch Bull at Four (1972); Teaser and the Firecat (1971)

MVC RATING: Bull: 4.0/$$$; Teaser 4.0/$$$$

It wasn’t until Cat Stevens accumulated a bunch of songs that I grew to appreciate him. WIth one exception — ‘Wild World.’ That song hooked me from the beginning.

‘Father and Son’ not far behind.

Both songs are on Tea for Tillerman. an album I don’t have. The radio was where I picked up on that song. The truth is, even though I have two of Cat Stevens biggest selling albums, I didn’t listen to them much because the hits were all over the radio, and I never spent the time to explore the songs that weren’t so famous.

Catch Bull at Four, for example has no hits and is a good album. Surprisingly, Catch Bull was one of his biggest hit albums. But Teaser was the breakthrough album for Stevens. It had Peace Train and the gorgeous ‘Morning has Broken,’ a song found in many Christian church hymnals. (Although he popularized the song, Stevens did not write Morning has Broken.)

When I did try out the albums I found some to be erratic. Several songs, I thought, were meandering and oblique (House of the Freezing Steel, for example.) It wasn’t until I got a greatest hits collection on CD that included all in one place “Wild World,” “Peace Train,” Father and Son,” “The First Cut is the Deepest,” “Morning has Broken,” and ‘Moonshadow,’ among others — that I paid attention. His voice and unusual vocal style grew on me.

In the late 1990s after several life-changing events, including nearly dying of tuberculosis, Stevens changed his name to Yusuf Islam and converted to Islam. For years he wouldn’t play his old music or even any secular music. As Yusuf he eventually came back to playing his old songs about 2006 — as well as new ones. I have listened to the Roadsinger one of his first Yusuf secular albums. and though he’s singing in his old familiar voice, the songs are more spiritual and it doesn’t have any potential classic singles on it like his older albums — but certainly worth exploring if you are a big Cat Stevens/Yusuf fan.

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Addendum and update: ‘How I stopped my horrific hallucinations’

As I continue living with this disease, Lewy body dementia, I have some post-game analysis on one of the most terrifying stories I’ve written about all this.

The post, which is on this blog, is headlined ‘How I stopped the horrific hallucinations that threatened my family, my sanity and my life.’

I am writing to add some nuance to the declaration in that story that I took one wonder pill — primavanserin — and ‘poof’ the ‘hallucinations went away.

That’s an oversimplification and I am tweaking the post a bit to better reflect reality, and you know how much I appreciate reality.

I do believe in the ‘wonder’ drug, primavanserin (Nuplazid), and that it was instrumental in helping me climb out of my hallucinations and back into reality. But the issuance of that new medication was part of a total review and adjustment of all my medications.

We went to several doctors where I received prescriptions for a medley of medicines. I do remember believing that I could use the carbodopa/levadopa on a sort of use as needed situation which led to me overmedicating myself, I suspect.

Carbodopa/levadopa treated the Parkinsonian effects of my Lewy body dementia, enabling me to write, walk easier and rid myself of that horrible, hard-to-describe feeling inside. I now think the increased use of that carbadopa/levadopa coupled with doses of anti-anxiety medication, an antidepressant and seriquol sent me into a psychosis, driven by my Lewy body dementia, where I was immersed in an alternate reality.

Once dropped into this state of unreality I had a hard time communicating to my caregivers what I felt was going on.

We sought opinions from several doctors and settled on a plan from Dr. Kasia Rothenberg, MD, PhD, at the Cleveland Clinic. She added the Nuplazid, and cut back on doses of just about everything else I was taking.

I found it interesting that as my medications were re-configured, my hallucinations built a story around it.

In these latter stages of hallucinations, I had gained control again of my house and delivered a dramatic speech to my nemesis, Red John, and his family telling them they had to leave my house.

And I haven’t had the hallucinations since. Well, I should qualify that. I still see Red John and other cohorts in various patterns, in crumpled bed sheets,, in the windblown movement of trees and bushes. Red John is sometimes smiling like we were old buddies, other times the look will be menacing but I can make it go away by looking away. These glimpses are a far cry from the immersion into another world that I went through last summer. Thank God.

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Roxy Music — 117

ALBUMS: Avalon (1982); MUSIQUE: The High Road (1983)

MVC Ratings : Avalon 4.5/$$$$; Musique 4.5 $$$

Over the years I’ve tallked to a lot of people about music. I’ve argued over albums that are underrated or overrated. I’ve talked about sound quality, which musicians are best at their instruments, and so on and on. It beats talking about the weather.

A lot of music lovers in my particular demographic i.e. balding older white males with mediocre dance moves, like or love Roxy Music. That may be a statement that is hard for me to explain. But, especially in Roxy’s later years( I mean early 80s), the group displayed a smooth sound with excellent instrumentals and a lead singer in Bryan Ferry who was the definition of smooth.

The High Road, a live EP from ’83, has two of the best rock covers I’ve heard: Jealous Guy (where they re-work the Lennon song;) and Like a Hurricane, Neil Young’s windy love song. This album is an EP with four song. But you get the two aforementioned songs on one side with about 15 minutes of music.

Avalon is a full length album.’ More than This’ was a No. 1 single in the UK, but surprisingly never cracked the top 100 here in the US. The title song and ‘Take a Chance on Me’ are a few other highlights. If you like the sound I’d buy both albums. I have an anthology of all their work on CD, and it is good but does not have these albums on it, instead focusing on older material like ‘(Do) The Strand.’ Now, one of their better songs — from the album Siren — is called ‘Love is the Drug.’ I like the crunchy guitar sound in that song. Again I have that digitally.

You may also have noticed the cover of The High Road is featured (bottom right) in a collage-like display on my Home Page.

Also see Bryan Ferry.

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Dwight Twilley, Dwight Twilley Band — 126, 125, 124

ALBUMS: Jungle (1984); Twilley (1979) SIncerely (1976)

MVC Rating: Jungle 3.5/$$$$; Twilley 4.5/$$$$$; Sincerely 4.0/$$$$$

One of the great lost bands in the 70’s and 80’s. Their career stalled from almost the beginning. The early single ‘I’m On Fire’ charted at No. 15 with virtually no promotion and it sort of went downhill from there.

The band, it seems, went through the meat grinder in terms of record labels and contractual malfunctions. A good blow-by-blow on this by AllMusic.com. The group from Tulsa, OK, consisted mainly of Twilley and Phil Seymour. Tom Petty worked with the group for a time; and Susan Cowsill was a touring member.

Twilley was bargain bin fodder when I snagged my three albums in the 1980s. Lot’s of memories playing these albums (the first two anyway in college. The self-entitled Twilley caught my ears from the beginning with the song ‘Out of My Hands,’ a sad rockabilly tinged ballad with a slight echo. In fact that echo rockabilly sound created an ethereal, atmospheric sound that was standard on these two earlier albums I picked up.

The third album I bought was Jungle and seemed to be aiming for a wider audience, or should I say straining for a wider audience. The album spawned the single, ‘Girls,’ with a racy-for-its-day video.

The album but was overall hurt by overproduction. Twilley pulled back on his rockabilly and seemed to go straight for a commercial pop/rock album.

While Twilley’s career continued as he put out records of music he never released due to contractual disputes, outtakes in addition to new music.

His early status as a bargain bin pick-up has changed as his music is rediscovered; there are folks on Discogs selling some of it for upwards of $40 and $50.

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Daily Journal April 21, 2021: What am I doing?

People often ask me how I am doing. But maybe that’s the wrong question — for all of us.

Let’s try: What am I doing? Or, what are you doing?

Well, I’m staying alive, staying alive as the Bee Gees put it. My primal survival instincts are kicking in. My degenerative brain disease isn’t the Shootout at the OK Corral. It’s more a war of attrition; not a sprint, but a marathon. Tools include exercise, diet, cognitive workouts, music, writing, research and love. Absorbing the love and care of my friends and family, even when it hurts.

What am I doing?

Making up bad jokes and puns.

DId you hear the one about the guy who said ‘Doctor, doctor what wrong with me? Doctor says I’m afraid you have a dire liver.

Dire liver? The man exclaimed. Well, am I going to liver dire?

What am I doing?

Eating sesame seed crackers, putting sesame seed in soups and looking for other ways to consume sesame seed oil. This follows a study that showed sesame seed slows down the unwanted proliferation of Lewy bodies, the protein tied to Lewy body dementia and Parkinson’s disease.

What am I doing?

Getting my second and final COVID vaccination. I received a Pfizer vaccination at the Birmingham airport this morning.

It was cold, windy with temperatures dropping below 50. I appreciate all the health care workers who while trying to keep themselves warm, especially their hands, administered vaccine shots in a drive- through setting.

It occurred to me that this organized and quick delivery set-up was happening at hundreds (thousands?) of locations across the country, a remarkable feat when you extrapolate. It’s what we are doing.

But there were fewer people getting vaccinations this morning than there were three weeks ago when I got my first one. Nationally, they are worried about a slowdown in vaccinations. What are we doing? Waiting for COVID’s next variant.

What am I doing?

Sitting here wondering if I am going to have any side effects and hoping they will be inconsequential like my first shot and like its been for most of the millions of shots administered. My arm is slightly sore. That’s it.

What am I doing?

Musing on the grocery store observation from my wife, Catherine, who said there’s a buoyancy in the air she believes is tied to the Floyd verdict yesterday (Tuesday 4/20/2021).

What am I doing?

Realizing that is the right question. And ‘what’ is the right word.

At this stage it’s not how we are doing. That’s looking back, making an assessment, writing a report to file alongside millions of other words, meetings minutes and court depositions. That’s wringing our hands while a modern day plague kills millions of people; while bullets are sprayed every day in neighborhoods, schools, stores, workplaces and dark alleys across America.

So the question is put this way:

What are we doing?

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How I stopped the horrific hallucinations that threatened my sanity, my family, and my life

NOTE: This is an account of a particularly difficult time in my battle against Lewy body dementia when I lived for months hallucinating around the clock. Much of this occurred May, 2020 through November 2020 ending in December . I will tell you more about escaping the clutches of my hallucinations but first I’m going to describe one of my hallucinations, a serial hallucination involving a lot of the same people or beings. Addendum, June 23, 2021: See this for updated information.

———————–

I didn’t really know where we were sleeping, my wife, Catherine, and I.

It was like a laboratory with lots of stainless steel and glass walls so we could be observed. I hated going to bed every night because I knew that was when the attacks would come.

In this ‘place’ which was actually my home, I felt like I was being studied, to see how well I performed under pressure as a Lewy body patient.

There were Beauty and the Beast style anamorphic scenes where lamps would talk to stuffed animals, where bed time was dreaded because I knew I’d be attacked by my ongoing nemesis Red John – a name I gave him because of his hair color. I also realized, after I had named him, that it was the same name of a fictional serial killer in the TV drama ‘The Mentalist.’

My Red John had no legs and could swim like a dolphin.    

Oddly as this hallucination unfurls, he said he loved me and practically sexually assaulted me in our first encounter. I was so flummoxed by his maneuvering and my confusion as to where I was — I told people, family and friends, about Red John but was told he didn’t exist — that he was a hallucination. Nevertheless, I took to wearing several pairs of underwear in addition to athletic pants with the drawstring tied tight.

Red John put big eel-like creatures under the sheets at the foot of the bed and they’d slide up toward me — I could see them moving under the bed covers. I knew somehow that one, or all of them, was Red John.

I built blockades with towels and pillows. My wife sleeping next to me seemed oblivious until I’d jump up and pull all the covers off the bed. Sometimes there’d be a platter of raw fish in a part of the sheet. That was freaky but my wife showed me how to make it disappear if you shook the sheets. She never saw the fish so I was amazed at her knowledge of the world I was living in. She’d shake the sheets and I’d watch them disappear in mid-air.
“There, all gone she’d say,” And I’d go back to sleep until I’d look over and see some ghostly white old man with hawk like features and talons for hands appearing to be trying to molest my wife. ‘I’d rip the covers off again to the increasing dismay of my wife, now agitated from the sleeping interruptions. This continued for days. Maybe months.

During that time my wife said she sometimes feared I was trying to assault her, after all she never saw Red John or the other people I saw.

I was furious every night at Red John who I know was watching with a group of younger (teen-aged) kids who seemed to idolize him. And then there were people in lab coats with their pens and notebooks. And cameras, both hidden and not hidden, were aimed at me.

My anger was beginning to override my fear.

One night when Red John came rolling around, I leaped out of bed and hit him two times in the face, stuffed him in a burlap bag, from I don’t know where, and started swinging him around over my head singing the theme song to the Beverly Hillbilly’s television show. My strategy was to act like a lunatic to keep them off guard, and I was succeeding.

I told Red John they wouldn’t put me in the other hospital because I was just a little too ‘nuts’ for them. I said it in my crazy voice. Loud. Remember I’m still swinging Red John around in a bag telling him I was going to throw him down the stairs.

I didn’t. Throw him down the stairs, that is.

But his attitude toward me thereafter was one of wary respect.

My middle daughter Emily was in the bedroom next door (somehow this all morphed back to my house) and she came out and saw me swinging around a pillow and yelling at it. I let out a string of profanities and let the world know that I wasn’t going to take any more abuse. Emily said she never saw Red John just me, screaming with the pillows and sheets.

I never really knew where I was.

At one point in my hallucinations I was positive it was a rehab center for people who had lost limbs and by night it was a sort-of pick-up bar for these amputees.

My other working theory that it was a university research team investigating how Lewy body patients react to stress. But I couldn’t understand how they did the special effects — the disappearing and the telepathy and animated furniture. They have some of the best special effects this side of Hollywood, I told my brother.

I asked Red John, who looked a little like Sean Penn: ‘Where are you from, or where is this place? The 7th dimension or another universe or what?

He smiled, I think, and began whispering as these beings did. But sometimes they would yell talk. It seemed extremely fast – this talking, kind of like saying the word ‘onomatopoeia’ over and over again as fast as you can. As they did, their bodies would vibrate, sometimes disappearing altogether.

They can see each other and they could see me. I could  see them which kind of freaked them out.

As soon as they  looked at me they’d lock eyes and I knew they knew I could see them.  I  used this as an advantage. They seemed to tolerate the human who could actually see them. I took this to mean they were usually the unseen.

My goal was to get out and back to this normal life I once  had. I was beginning to grow stronger and less stressed living in the hallucinated state. I got better at knowing I was in a hallucination. I learned to avoid eye contact lest I get pulled down a rabbit hole, or the lair of a creature scarier than a rabbit.

Scientists tell us these hallucinations come from our brains — that brain uses its memories to create this other world. I learned if I told them they did not exist many would disappear — poof. (Red John was resistant to this kind of tactic.

So they may not be real in a traditional measurement detection but I say if you have a full immersion hallucination like I did, it will shake your science beliefs to the core.

You can say hallucinations are not real but they changed my life, forever.

NO MORE RECORD SKIPPING

By all rights I should be dead by now. I feel. But like the reporter I was trained to be, I went in, walked up to the edge of what seemed to be the biggest story of my life. And I came back with notes.

I was diagnosed with Lewy body dementia in 2016, after having been earlier that year diagnosed with Parkinson’s. For Lewy body, death on average comes about 4 –8 years after diagnosis. But some of us live 10 or more years longer.

Thousands have followed my record countdown (myvinylcountdown.com) until it went silent last July. It’s back up and running, I’m happy to report.

Some wondered if I had reneged on my promise of finishing all 678 reviews before I die. I haven’t and I won’t. I have renewed life. I have 188 reviews to go.

The big question is: How did I break free from this disorienting, dark – but interesting world?

The big answer is: A new medication and a reorganization of my medications.

The new med is called pimavanserin, or its commercial name, Nuplazid. I am in a project in which I receive doses, free of charge, for one year. I am a happy Guinea pig. It has given my real life back again.

Now anti-psychotic drugs are a powerful and sometimes dangerous tool. Nuplazid has been approved for Parkinson’s psychosis but not ‘dementia-related psychosis.’ So what about Lewy body?

My take is that Parkinson’s psychosis and Lewy body dementia are basically the same thing.

My doctor, Dr. Kasia Rothenberg, MD, PhD, at the esteemed Cleveland Clinic, found out about this study and had to fight the drug overseers, to get it prescribed to me because I had this Lewy diagnosis.

Lewy and Parkinson’s have the same oversupply of the protein alpha-synuclein killing the brain cells. In Parkinson’s the proteins are concentrated in one place whereas Lewy body, the proteins accumulate and kill brain cells in different regions, according to my understanding of the diseases. In the end in some cases Parkinson’s hits the brain in a way that Lewy does — causing hallucinations.

Yet the box says for use with Parkinson’s psychosis only in big bold letters. Dr. Rothenberg, like all good doctors, saw an opportunity to switch things up for the good health of the patient. It has worked.

But remember always, always, consult your doctor or multiple doctors when faced with an illness, especially one as serious and misunderstood as Lewy body dementia. We have seen a total of six doctors, all of them helping push us on the right path. It’s a journey.

I’ve spent the last five years or more trying to get more attention from drugmakers, doctors, and ordinary people who need to know more. As this shows, Lewy body dementia is left out of the conversation.

One of these days, I hope Lewy will receive some attention and publicity about how it is different but very much like Parkinson’s.

Do I worry these major hallucinations will come back. Of course. I still see what I call remnants of the old hallucinations: Red John winking at me. Faces in windows. And drop-in visits by a character from one of my many hallucinations. I usually smile and say, ‘How is it going?’

END NOTE: It should be emphasized here that I wasn’t asked to write this by the drug company or anyone else. Other than free doses as part of the study group, I received no compensation.

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Rainmakers 215, 214

ALBUMS: Rainmakers (1983)

MVC Rating: 3.5/$$$/

These Kansas guys jumped out of the speakers and gave little notice they were about to slice the Red Sea.

Holy Moses.

This came out about the time I started working here the first time around (1986). So my old old Birmingham fans may remember some of these tunes.

They sound a bit like Jason and Scorchers. And the lyrics seem political with some religious overtones. But not sure what about? Am I missing something here?

I did not put you here to suffer

I did not put you here to whine

I put you here to love one another

And get up and have a good time.

Other songs are a little more surprising, if not, if not disconcerting: ‘Big Fat Blond’ and ‘Government Cheese,” which throws this verse at you.

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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.