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Is this my last column? (blog version)

This is not my last post. At least as far as I know this minute in time.

Because I have an incurable brain disease my life will likely be shortened; I just don’t know by how much.

So this has  me thinking about my last post.

I’m still getting along pretty well at 58 after my Lewy Body dementia diagnosis about 20 months ago.

Why think ahead to my last post? I don’t really want to think about it. How bad I’ll be when I can no longer type. I may not even know my last post when I write it.

But I’m thinking about it because I want to make the life I have now as precious as I can. With full knowledge of my assets and deficits, financially and physically.

I want to make decisions directly related to those things. I want to provide for a smooth transition for me and my family. Let’s call it transition defense.

Let’s make super difficult times into not-so-difficult times. It’s easier to smile, laugh and be with your loved ones if you aren’t worried about how to pay the light bill after retirement.

Everybody is going to die. There has been no change in the human mortality rate in, oh, forever. It’s holding steady at 100 percent. (Trust me, I keep my eye on this stat.)

Death should be an open conversation. My wife, Catherine, as a pastor who has worked as a Registered Nurse as well, has visited and cared in both of her roles for dozens of critically ill people in Florida, California and Alabama. Too many didn’t leave instructions or at least legally binding ones. She has helped from the patient’s advocate view to make sure the patient’s wishes are kept.

That means questioning our health care systems where doctors are taught to save and prolong life but not how to prepare for death. The system is  set, intentionally or not, to financially incentivize interventions and heroic measures. When the patient is a pain addled  95-year-old person, open heart surgery may not be the best idea . The system  doesn’t  do death well.

Have you thought about it? Like I’m doing here. Got a will? Power of attorney? Does your spouse or someone you trust know about all savings accounts, investment accounts, retirement funds? Passwords?

Heck, I’ve got more passwords than brain cells at this point.

If you have a spouse will they stay in the house? Or downsize? Maybe it’s time to think about downsizing now. Maybe you should look at assisted living facilities or step-down communities that provide increasing care depending on your health situation?

Do you have a financial plan for retirement? Other than waiting for Social Security. Are you at the age where you need to start moving the stock heavy positions in your  IRA or 401(K) to safer havens  like money market, cash or bonds?

Seek advice from a fee-only financial adviser. In other words, one who will take a flat fee, say $300, and build you a financial plan without trying to sell you any investments for which he or she may get a commission. Ongoing financial oversight of your investments generally costs about 1 percent of your holdings.

Have you talked  about death specifically. Funeral. What do you want to do with your body? Cremation? Have your ashes shot out of a cannon like Hunter S. Thompson? Pour the ashes in the ocean.

Do you want your wife or husband or trusted love one to authorize pulling the  plug or do you want your doctor to make every effort to keep you alive? Do you want that at age 85? age 95? Age and condition would be key considerations.

There’s a specific thing called Do Not Resuscitate (DNR) which you would need to discuss with your family. What happens when you become incapacitated and can’t make the decision yourself?

I do know I don’t want to consume a lot of health care resources when I’m too incapacitated to blow my own nose. I would like to say goodbye in a final column, go home and  kiss Catherine, Hannah, Emily and Claire on the cheek then slip quietly out the back door..

‘Night night,” I’d say.

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Still catching up with vinyl record countdown before I die (blog version)

UPDATE 6:22 p.m. 4/21:  Back from record stores. Long walk. I got two records one at each shop at 5 points.  Roy Clark’s ‘ Spectacular Guitar.’ He’s one of the best guitarists  and perhaps underrated by rock fans. Grass Roots, some personal reasons I picked ‘Golden Grass’ which I will  talk about at a later date. Fine day to shop, came in under $15 for two I wanted. Don’t tell Catherine. I’m still trying to find the right time to tell her about my growing stack of albums.

I did confess to getting Neutral Milk Hotel’s Aeroplane  record on newly minted vinyl during a recent road trip to see family.  It’s an album  I had on CD, but I love it and couldn’t resist a purchase at WUXTRY in Athens, Ga., where the band lived and, I believe recorded the album.

Hey all,

I published another Countdown update on AL.com. Click here.

I am going right now to 5 pts. South to Record Store Day at the two stores there, Charlemagne and Renassance.  And Seasick little later.

I’m still taking this week all in as my colleague and friend John Archibald won a Pulitzer Prize for commentary.

I’m off …….Oh wait a minute!

Coincidence or not department. The Difford and  Tilbrook vinyl record I have as my latest review has a song I singled out “Picking up the Pieces.”

My five snippits I introduce to AL.com readers today contains the Average White Band’s famous hit ‘Pick up the Pieces’ a totally different song from different eras and genre………wow.

OK maybe not so  Wow but it is kind of strange…OK maybe not strange at all (I’m going now).

Listen to the AWB video piece of my post and watch the (totally white) crowd try to dance … funny (OK I’m going now.)

 

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Dire Straits — 530, 529, 528,

ALBUMS: Brothers in Arms (1985); Making Movies (1980); Dire Straits (1978)

MVC Ratings:  Brothers, 4.5/$$$; Making Movies, 4.0/$$$;  Dire Straits, 4.0/$$$

I was hesitant about doing Dire Straits. They have become so big that it is almost cool to hate them. Like the Eagles; people love to hate them. That hate campaign was generated I believe by the classic character ‘The Dude’ played by Jeff Bridges in The Big Lebowski.

But I think it’s unfair. Both to the Eagles and Dire Straits.

Just because you have heard Hotel California 343,000 times doesn’t make it a bad song. Just because the “Walk of Life” sits in your head ready to come to life at anything resembling the Hammond B3 organ intro to the song, doesn’t mean it’s terrible. Annoying, maybe.

But Dire Straits and the Eagles are very good, yes, great bands. I’ll deal with the Eagles later in my blog, soon actually when I get to the ‘E’s’.

It’s the phenomenon of the cliche’ — a word or phrase overused to the extent it becomes dull. But how did it get to be a cliche’ to begin with? People used  it, liked it. It was, at the end of the day, a way to put a bottom line on it. Moving forward, if you know what I mean.

Do the walk of life to that one  hotel that’ll let you check in but  never check out. But of course that’s so 1970s.

I especially like Dire Straits because of a concert I saw at the Agora Ballroom in Atlanta in my formative years. It was Nov. 8, 1980. They were just out, touring America off Making Movies, their third album, and were relatively unknown or at least unknown enough to be playing the US in these smaller venues.. The now-defunct Agora was large for a nightclub but still a small venue for a concert.  It was  previously called Alex Cooley’s Electric Ballroom. It burned down in 1983 (some stupid with a flair gun…no, wait that’s another tune, sorry.)

As I remember the Agora was across the street from another great venue, The Fox Theater.

Knopfler (left) and Dire Straits

We sat cross-legged on the floor in front of the stage. I still vividly remember the now emblematic guitar solo from Sultans of Swing and watching his hands move through the chords and his finger-picking as it increased speed.

Knopfler is one of a few electric guitarists who doesn’t use a pick. With a pick, I’d imagine he would sound a lot like Eric Clapton. But the finger picking takes a little sting out. It is distinctive and slightly muted.

That doesn’t mean he can’t crush some chords as he does in the very popular “Money for Nothing,’ arguably one of the top recognizable riffs after Deep Purple’s ‘Smoke on the Water,’ or the Stones’ Satisfaction (or ‘Honky Tonk Woman.’)

It was Nov. 8, the day before my 21st birthday , and I was taking it all in. I was sipping Toohey’s out of an Australian oil can. (It would be several years before they upped the drinking/nightclubbing age from 18 to 21.)

The small venue, the front row seats and the friends (including Catherine, my soon-to-be wife, made for one of my most memorable concert experiences ever.  Dire Straits went on to sell an astronomical 100 million albums over their career. (The Eagles have sold even more, 150 million).

That’s not to say that I think Dire Straits was the greatest band ever.

Although,  Knopfler sings a bit like Dylan, he certainly was no match for Bob in the songwriting department.  See what I just did before I say, his lyrics sometimes wandered into cliche’.

That’s all from this  department although stay tuned for my piece on the Eagles and related:  Mark Knopfler’s soundtrack album, Local Hero. Great movie, great soundtrack.

If you have any doubts about whether this man can play, watch the Sultan’s video to the end. And to think I saw that about six feet away.

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Catch up on my vinyl countdown (blog version)

Below are some links and excerpts from stories I wrote about my new status at AL.com

It’s all good. Really good.

Bottom line: I’m now going to be writing full time as a columnist. Here’s part of what I wrote and published  on AL.com Friday.

A little over a year ago I wrote a column that pulled out the tried and true trope: I have some good news and bad news.

My ‘good’ news was that despite what I had previously announced in a column, I did not have Parkinson’s disease after all.  I did not have that dreadful brain degenerating disease that left Muhammed “The Louisville Lip” Ali speechless, and makes Michael J. Fox shake and tremble like he has just been pulled out of an ice fishing hole.

I didn’t have it. But I had something else.

There was that word ‘but.’

Oliver listening to and writing about one of his 678 vinyl records stored on bottom shelf. Despite a degenerative brain disease, he vows to review them all. (Mike Oliver).

My wife, Catherine, scolds me when I use the word ‘but’ after a declarative clause. “When you say ‘but,'”she says, “You are negating everything you said in the first part of the sentence.”

But, but, but  … I argue. (I always argue semantics).

But it’s true in this case. Not having Parkinson’s was NOT good news. I was misdiagnosed (not uncommon). I didn’t have Parkinson’s; I had Lewy Body dementia, which in general leaves its patients with a shortened lifespan. The average lifespan after diagnosis is five to seven years, usually much shorter than the lifespan expected after an Alzheimer’s or Parkinson’s diagnosis.

I was diagnosed about 18 months ago at age 56. So, I have a little time, I think.

For more go to this link :

http://www.al.com/news/index.ssf/2018/04/i_am_a_writer_with_a_brain_dis.html

Today I wrote more specifically (to theAl.com audience ) about my  countdown and record review:.

So I’ve told you earlier I was going to be doing more writings on AL.com, and some of it will relate to the countdown of my vinyl records.

I have vowed in my blog that I will count down my collection of 678 vinyl records before I succumb to a degenerative brain disease called  Lewy Body dementia.

I’m 58 now and it appears I have enough records to last me about two years, although I am feeling deadline pressure.

You can  read that story here:

http://www.al.com/news/index.ssf/2018/04/catch_up_to_my_vinyl_countdown.html

It gives my blog an exponentially larger audience. And  that’s good.

Keep reading my blog and  be on the watch for other columns at AL.com

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The dB’s — 532

ALBUM: Like This (1984)

MVC Rating: 4.0/$$$$

This reeks of college.  Although this came out in 1984, two years  after I had graduated from Auburn University.

I guess you may have earlier picked up that I matriculated there.

But my home was Athens, Ga. Yes I went to UGA as well. And Athens, at that time, was on the cutting edge of alternative music with the B-52’s, REM, Pylon, Love Tractor and many others.

I straddled the line, sometimes going all in on so-called alternative music, but still respecting roots rock and classic rock, blues and soul.

As Springsteen famously sang: I learned more in a three-minute record than I ever learned in school.

The dB’s had several very good musicians and songwriters, Chris Stamey and Peter Holsapple, who later joined  REM, on tours. The dB’s had that college radio sound, a little jangle, a poppy feel that felt on the edge of breaking out but nonetheless retained its alternative label — perhaps a reason they never really did break out.

The dB’s were clever, smart and musically interesting. A Spy in the House of Love is one my favorite rock and rollers, but db’s still screamed dorm room and college life, which as I listen to it right now is good — because it  brings back memories.

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

.

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Two words emerge that I don’t like

There are two words I really don’t like.

One of them is ‘merge.’

The sign on the highway orders drivers to merge.

It sounds like a command, a rude command at that. Merge!

[Public domain], via Wikimedia Commons
We can’t all do it at the same time. But we have to do it. The sign says so.

Now, what if I can’t merge.  The cars are too jammed together. Then, I need someone to  YIELD. I like that word.

The other word I don’t like is dementia. I have Lewy body dementia or (LBD). Sometimes it’s called Dementia with Lewy bodies.  Sometimes, people take the dementia out altogether and say Lewy body disease. But dementia is the most used and most accepted description. It is a word that broadly describes damage to the brain that affects cognition, memory, speech, etc. That brain damage can be caused by Lewy bodies (proteins) or Alzheimer’s or other brain diseases. Although we know the process of this brain damage, in cases like Lewy, Alzheimer’s and Parkinson’s, we don’t know the cause of these diseases. And there is no cure.

So why don’t I like the word dementia? Well for one, it  is a root word of demented, which sounds menacing.

The word itself, demented, sounds too much like ‘demon.’ The dictionary says demon is a bad spirit or ‘one who acts as a tormentor in hell.”

The dictionary says demented means “driven to behave irrationally due to anger, distress, or excitement.”

Now that’s a little better than being in hell.  But if I’m driven to irrational behavior it’s because I am ‘driven’ to it.

 

Image result for yield sign

Because of my LBD, I have quit driving and am now being driven by other people: my wife, my daughter, my colleagues, friends, neighbors, church folk, Uber drivers. Just about anybody I  can flag down.

I must admit it has been an interesting life-changing adventure.  No longer in the driver’s seat, I’m on the passenger side.

The general consensus is that I’m one of the worst backseat (or passenger side), drivers  in the world.

It does allow me time to get work done via phone or laptop while someone else is driving. If I’m not gripping the seat with my white-knuckled hands

Or stomping the floor like I may find a brake on the passenger side.

I have so far resisted the urge  to discuss the correct method to merge with my drivers.

Take the zipper merge, for example, which according to my Internet research (Wiki) is a “convention for merging traffic into a reduced number of lanes. Drivers in merging lanes are expected to use both lanes to advance to the lane reduction point and merge at that location, alternating turns.”
Like a zipper.
But I usually keep these tidbits of information to myself, as I have seen my drivers get a little agitated when I ‘help’ them drive.
I usually save my instruction on my rides to things like: WATCH OUT FOR THAT TRUCK!
Um, oh, OK, we have the green turn arrow, I see that now. Sorry, I just couldn’t tell if that truck was stopping; it did roll a bit.
So I think I’ll hold onto that merge information until we put some time between my unnecessary shouting.
HONK HONK, the car behind us blares the horn because we are slow to merge.
I think of yelling, “Oh go merge yourself.”
But I yield.
Don’t want to act demented.

 

 

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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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Jimmy Buffett –612

ALBUMS: Songs You Know By Heart : Jimmy Buffett’s Greatest Hits (1985); Living and Dying in 3/4 Time (1974).

MVC Rating: Hits: 4.0/$$$; Living: 3.5/$$$

Middle of the road singer-songwriter. Notice I didn’t say mediocre. I admire, and enjoy, some of these Buffet hits, not just for the broad appeal and overall catchiness, but also for shrewd, descriptive lyrics such as in the rueful A Pirate Looks at 40.:

I made enough money to buy Miami, But I pissed it away so fast,      Never meant to last, never meant to last.

He’s sold gazillions. Parrotheads follow and love Buffet like Deadheads did/do for Jerry Gracia and the Grateful Dead. (OK, Phish and Widespread Panic, too, sort of.) The difference in audiences may start at choice of intoxicants but goes beyond that. Buffet is Spring Break for Baby Boomers, with kids and grand-kids  and coolers in tow.

I hereby declare Margaritaville to be the No. 1 all time song played by the highly tanned dude in a flowery shirt and acoustic guitar poolside at the oceanfront Holiday Inn.

Some people claim there’s a woman to blame, but I know it’s my own damn fault. (Possibly Buffet’s best line.)

Did Buffett single-handedly boost the now enormous tequila industry?

I always said Buffett made the only song reference to Hush Puppies, the shoe not the cornbread ball, in Come Monday. And he may be the only one to ever rhyme pop-top and flip-flop in a song.

So he has a lot of achievements.

But if I have to hear Cheeseburger in Paradise again, I might consider giving up one of my favorite foods. And if I have to hear Why Don’t We Get Drunk and …. again, I might consider giving up … oh, never  mind.

NOTE: SInce I last reviewed Buffet in the above post, I happened on another $1 record find of Buffets album. I’m not going to give it a big review but just to say: It is not bad, a peek at him before he became famous hints of the qualities that made him famous. Those qualities are pleasant semi-story-telling songs that goes good with some beach time and beer time and the smell of coconut sunscreen.

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

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The Beach Boys — 653, 654

ALBUMS: Pet Sounds (1966) Shut Down Volume 2 (1964)

MVC Rating:  Pet Sounds, 5.0/$$$$$; Shut Down 4.0/$$$$

So, we’ve had the Beat Farmers, Beat Rodeo and the Beat. Before we get to another band with a ‘Beat’ in it, let’s go to the Beach.

This  copy of ‘Pet Sounds’ is a little worn. My rock roots were decidedly Beatles, Rolling Stones, the Who, Al Green, Hendrix, Janis, Otis Redding, Allmans and so on.

The Beach Boys didn’t sound like those. To my rock n roll ears, the Beach Boys tilted slightly toward Pat Boone’s version of ‘Tutti Frutti’ not Little Richard’s definitive take.

The Beach Boys on the west coast, specifically Southern California, seemed so white-surfer- boy with a decidedly middle class orientation — and there’s nothing wrong with that.

But for all their initial radio beach and car songs, there was genius at work from Brian Wilson. Listening to arguably their best work, ‘Pet Sounds,’ one is struck  by the arrangements and interlocking melodies, a jazz sensibility.  ‘God only Knows’ is a near perfect song. Sloop John is perennial.

Shut Down has Fun, Fun, Fun, which is definitely worth the three Funs. Shut Down also had some talking interludes which reminded me of a Zappa interlude if Zappa wasn’t so cynical. Come to think of it Zappa was actually making fun of the Beach Boys. Interestingly on Pet Sounds, there is some secret freak out at the end of the album after ‘Caroline No.’

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

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The Beat Farmers — 656, 655

ALBUMS: Tales of the New West (1985), Van Go (1986)

MVC  Rating: ‘Tales’ 4.0/$$, Van Go  3.0/$$

Now this group I haven’t listened to in more than a decade but I remember a time in the 1980s that some of my close Birmingham News friends thought this (first record anyway) was the greatest thing since sliced  beets. We even had a tradition that lasted years where we passed around a can of beets. Never opened it mind you, just passed it along, the same can.

I don’t know how it started exactly but at the height of Beat Farmer mania, someone bought a can of beets to a party held by say Will and Adele. So then Bob and Tondee have a party and guess what:  Will has a can of beets behind his back. Surprise! Beets! Tag you’re it!

(I know it, sounds like a B-52’s song but that’s what happens when you are living in your own private Idaho). This little beet shenanigans was going on about 1985-86

When the Beat Farmers came to Birmingham we all went to the Nick to see them. Or was it still the The Wooden Nickel at that time? Anyway, the band lived up to its reputation as being one of the best bar bands anywhere.

I have to say, and stop me if you can, but I truly believe that The Beat Farmers’ style was rootsy,  and grounded in the beat.

And they were  funny. If not a little profane.

Their funny songs were often sung by the now deceased Country Dick  Montana, who had to be midway between 6 and 7 feet tall and had a bass voice so low, it made the china chatter when we put one of his songs on in the  house. Here’s a sample lyric from California Kid with Country Dick on beat vocals (at the risk of revealing what we all thought was funny when we were 20-somethings.

She undid my boots, she untied my jeans
She untied my tubes I had tied in my teens
‘Bout that time the front door was kicked in
And there stood some scumball all covered in sin
He said “that’s my woman” I said “that’s no lie”
I blew a hole in him just as big as the sky

I got my Colt Forty Five, right by my side
I’m the California Kid, I hope you’re quite prepared to die

Whew! The Beat Farmers ladies and gentlemen.

They also had a song called Happy Boy which was silly enough to be a regular feature on the Dr. Demento show.

Country Dick died Nov. 8, 1996 with his boots on in the middle of a song, massive heart attack at age 40.

The video below will feature one of their more ‘normal’ songs.

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