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Thoughts on how to beat a fatal disease (blog version)

This is an opinion column from Mike Oliver, who was diagnosed  with the fatal  Lewy body dementia more than two years ago.

Acceptance of a fatal disease diagnosis is the first step.

Listen up brain. I’m talking to you.

That doesn’t mean you are not angry about it. That doesn’t mean you are not sad about it. And that doesn’t mean accepting everything the doctor says. Do research.. Ask questions. I’m not saying give up hope – for a cure, for a milder case, for, yes, even a miracle.

But be realistic.

 To avoid despair – and that’s a weighty word for giving up – you need to come clean with yourself primarily, and, then, others as you begin to become comfortable talking about  it.

I knew a person with a fatal cancer diagnosis who refused to talk about her cancer. Her friends and children eventually knew she was sick but had little to no time to prepare for her death. When she died her school-age children did not know death was even a possibility. Her death was a hard blow to handle without preparation, a sucker punch with long lasting effects.

Talking about my fatal disease, even joking about it has been my way of making this horrible thing bearable. I also talk to my brain.

Now this might sound silly but try it: Stand in front of a  mirror and say “I know I have Lewy body dementia (or Alzheimer’s, or Parkinson’s, or cancer, or whatever it is).

“I know you may kill me before I want to die,” I say to my reflection, talking to my brain. “But I will fight you. I will not go gently — until I can do that on my terms.”

Still standing before the mirror I say: “Lewy, I will resist your memory damaging brain attack. I hereby give you, my brain, permission to summon whatever resources you have to fight back to slow the proteins down.

“Step up brain. You are me. I am you. Together we can beat this.”

 I received an email from a reader that illustrates some of what I am talking. I am printing the email here in whole.

Anne Pinkston in Nashville brought a tear to my eyes with this email.

    —–Original Message—–

    From: Anne Pinkston

    Sent: Thursday, February 14, 2019 10:32 PM

    To: Mike Oliver <MOliver@al.com>

    Subject: Thanks for your articles

    Dear Mike,

    I am guessing you receive more emails than you can read, but still I felt compelled to write.

    I am Anne Pinkston in Nashville.

    My husband Ken, age 76, too has been diagnosed with Lewy Body Dementia with Parkinsonism.    Several months ago, a friend in Birmingham told me about your articles, through which you are chronicling your journey.   That night, I sat up for hours because I could not stop reading your articles.  

    At that time, Ken knew very little about his “diagnosis” and had not been ready to embrace the diagnosis.    I began to read your articles to him at breakfast.  That is how I have exposed him to everything “Lewy”.   Now, he can sometimes even make jokes.  

    Your articles have been a great inspiration for me.   I love your sense of humor and your determination to not be defeated.  I relate to your wife, Catherine.  

    Tonight, I read your article about driving.   My husband had to give up driving in September, and should have sooner.  He has not adjusted yet.  I will read your article to him in the morning, with the hope that it will help him and will make him smile.   

    I believe you and my hubby will both “beat the odds” and live longer and better than expectancy for Lewy Body, so don’t give up.  

    Thank you so much for your articles, your humor and your amazing outlook on life.  You, Catherine, and your girls are to be admired.   I am guessing you have inspired many, many people, as you have inspired me.

    So your friends pledge $$$’s if you dunk.  Well, I pledge $500 to your July Mike Madness B-ball Tournament, whether you dunk or not.  But, I think you and  Dr. J’ Erving could both do it!  Is there a link for 2019 Mike Madness pledges.

    I have been including you and your family in my prayers.

    Keep that “vinyl countdown” going!

    Anne Pinkston

Thanks Anne for making my day! –  Mike

Post Script: Keep your eye on myvinylcountdown.com for information about the charity basketball tournament. We are in early planning stages right now. But I have a feeling this year’s Mike’s Madness is going to be a doozy.

AL.com version with reader comments.

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Kerri Kasem says Lewy body dementia needs more attention

Kerri Kasem and I talked recently about the disease that contributed to the death of her father, world-famous Top 40 disc jockey, Casey Kasem. He died in 2014 of complications of Lewy body disease.

Like myself (and countless others) the elder Kasem was first diagnosed with Parkinson’s. That’s one reason we need much greater awareness of this disease, which affects more than 1.2 million people nationwide, according to the Lewy Body Dementia Association.

Given that we had a similar mission — raising awareness of a little known and little understood brain disease — Kerri, co-host Ashley Marriott, and I talked for a podcast found on her KPOD her podcast website.

That podcast is now live at:

http://thekpod.com/the-kpod-living-with-lewy-body-dementia/

D

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Mark Knopfler, Kitaro 382, 381

ALBUM: Local Hero (movie soundtrack 1983); Kitaro.

MVC Rating: Local”4.5/$$$’ Kitaro, 4.0/$$$

For the Now Playing portion of my column featured on this website and AL.com, we have a movie soundtrack from Mark Knopfler that is good, very good, as is the movie.’

Local Hero,’ beautifully filmed in Scotland is a droll and understated comedy fits right in with Knopflers’s smooth sounding finger-pick work. Like all soundtracks, there are incidents of incidental music, and the album is mostly instrumental. But the overall quality is superb.

I’m adding into this review another sleepy time album -by – a musician who happens to be in alphabetical order, more or less, as I reach into the New Age and pull out Kitaro. If ‘Local Hero’ puts you in a restful peaceful state, Kitaro will just knock you out . A New Age record, for those who don’t remember, is light bright soft serve ice cream. I don’t know that image just came to mind. But I’ve enjoyed New Age musicians, such as George Winston, Michael Hedges and Kitaro.

It’s also fine background music where you don’t want the music to drown out the talk. I find that a lot of folks get into New Age music when they have little ones, nothing like a soothing Kitaro waterfall with flutes to ease those temper tantrums. Because when you finish your tantrum, you’ll be able to help the children, right?

Got that?

I highly recommend Local Hero, a good one that has held up.

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Kid Creole and the Coconuts, Dr. Buzzard’s Original Savannah Band –384, 383

ALBUMS: Kid Creole: ‘In Praise of Older Women (1980);’ Dr. Buzzards Original Savannah Band’Meets King Penett.

MCV Rating: KC: 4.0/$$; Dr. B: 4.0/$$

And now for something completely different. Swing influenced disco jazz.

Stony Browder and Thomas Browder AKA August Darnell, started Dr. Buzzard’s Original Savannah band in 1974 and it sounded far different from anything on the radio at the time.

Buzzard was more swing-y old timey whereas Kid Creole and the Coconuts was more jump jazzy and funky.

Taking a break from my Kinks and Who and Stones, I really enjoyed the throwback exotica and tropicalia of these bands. August Darnell, whose parents were Italian and Caribbean, according to Wikipedia, had a Master’s degree in English and a way with words.

The fun dance songs were flirty with steamy romance. Either of these or anything by either of the groups would be a great bargain bin find. I’ll bet Prince had some Kid Creole in his collection.

If you’re looking for something different.

 

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Carole King — 385

ALBUM: Tapestry (1971)

MVC Rating: 5.0/$$$

When I was growing up — I was about 11 when this came out — nearly all of the songs on Tapestry were on the radio. Or so it seemed. They are among the all time greatest pop songs ever written.

Rolling Stone magazine has her and writing partner Gerry Goffin at #7 on the list of greatest songwriters behind Bob Dylan, Paul McCartney, John Lennon, Chuck Berry, Smokey Robinson and Mick Jagger/Keith Richards. She’s the highest ranking female on the list. But I could argue for an even higher rank.

I think King hops the Stones’ boys and Smokey, all brilliant mind you, and on my desert Island I’d probably take the Stones first. But from a purely objective point of view, I think she’s a No. 5 on the list. And if you pulled the two Beatles together into one rank – the No. 2 slot — she would move up to the No. 4 slot. I’m not going to do a side-by-side on these but Tapestry, the album, is astonishing in that nearly every song is a standard.

But the kicker is this: Look at what she has written for other artists including a song — Chains — covered by the Beatles. Here’s a small sampling of non-Tapestry songs she wrote:

  • ‘The Loco-motion’ for their babysitter Little Eva.
  • “Go Away Little Girl,’ Donny Osmond and Steve Lawrence.
  • ‘Up on the Roof,’ the Drifters.
  • ‘Don’t Bring Me Down,’ the Animals.
  • ‘If it’s Over,’ Mariah Carey.
  • ‘One Fine Day,’ the Chiffons,
  • ‘I’m into Something Good,’ Herman’s Hermits.

At one time I remember Tapestry being the biggest seller ever, at least for a period, eclipsing Beatles. Then I remember hearing Pink Floyd’s ‘Dark Side of the Moon’ surpassed Tapestry. Don’t know if this is accurate, but it comes out of my Lewy body dementia memory that way. Tapestry is still in theTop 10 best selling album of all time.

The copy of Tapestry I have in the house is from my wife’s collection. We began dating in 1978 and were married 1981 and that involved ‘merging’ of some records and tastes. Catherine loved Tapestry and knew every word to every song. Here’s the songs from Tapestry as listed on Wikipedia.:

Side 1

  1. “I Feel the Earth Move” – 3:00
  2. “So Far Away” – 3:55
  3. “It’s Too Late” (lyrics by Toni Stern) – 3:54
  4. “Home Again” – 2:29
  5. “Beautiful” – 3:08
  6. “Way Over Yonder” – 4:49

Side 2

  1. “You’ve Got a Friend” – 5:09
  2. “Where You Lead” (lyrics by Carole King and Toni Stern) – 3:20
  3. “Will You Love Me Tomorrow?” (Gerry Goffin, King) – 4:13
  4. “Smackwater Jack” (Goffin, King) – 3:42
  5. “Tapestry” – 3:15
  6. “(You Make Me Feel Like) A Natural Woman” (Goffin, King, Jerry Wexler) – 3:59

I was learning to like some of Catherine’s music: James Taylor, for whom I skipped class to camp out and buy tickets to his sold-out concert at Auburn University in, oh, 1980 maybe; Carly Simon, whose ‘Your So Vain’ was one of the few songs I could listen to a million times without getting tired of it. Other groups she loved that I came to appreciate, for the most part anyway: Bread, America, the Carpenters and Diana Ross.

Here’s a good overview of her work by Rolling Stone.

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King Crimson — 386

ALBUM: Discipline (1981)

MVC Rating: 4.0/$$$$

This is a good progressive album. And as I’ve stated before progressive is not my go-to genre. Those who have been following this blog know that — but also know that I admire and own some good examples: Emerson, Lake and Palmer; Yes; and Genesis.

And I also own what I’d call genre-busting proggers: Captain Beyond, Frank Zappa, Pink Floyd, and Crack the Sky.

It all starts on this album with ‘Elephant Walk’ with clever wordplay on the meaning or lack of meaning in verbal communication. Robert Fripp and Adrien Belew deliver some articulate and geometric guitar that blazes, stops and fills better than anyone this side of Zappa on his A-game.

But it’s the opening lyrics that set the tone in ‘Elephant Talk.’

Talk/It’s only talk 
Arguments, Agreements, Advice, Answers , Articulate announcements 
It’s only talk 

Talk /It’s only talk 
Babble, Burble, Banter, Bicker/bicker/bicker, Brouhaha, Balderdash, Ballyhoo 
It’s only talk/ Back talk 

Talk talk talk/It’s only talk 
Comments , Cliches, Commentary, Controversy, Chatter, Chit-chat/Chit-chat/Chit-chat, Conversation, Contradiction, Criticism 
It’s only talk/Cheap talk’

Better at alphabetical order than I am. Some call it ‘math rock.’ You can see for sure that Robert Fripp and crew influenced progressive New Wavers, especially the Talking Heads.

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King of Comedy (movie soundtrack)–387

MVC Rating: 4.0/$$

I remember buying this 1983 compilation soundtrack for one song. Van Morrison’s ‘Wonderful Remark.’ A great great song that at that time appeared on no other albums; it was written explicitly for this movie.

Yet I believed it was as good as anything Morrison has done — and that’s alot.

Now there are other good songs on here, some like the Pretenders’ ‘Back on the Chain Gang’ I already had (and loved). Since then the ‘Wonderful Remark’ cut has been on several compilation albums.

Listening to the soundtrack, I almost want to see the Martin Scorcese movie starring Jerry Lewis and Robert DeNiro. A black comedy it was blistered by critics at the time but now seems to have fallen into the good graces of some critics.

Play list with links from rateyourmusic.com

Here’s Van Morrison video. This song was worth the admission for me, esp. because it was unreleased at the time. but as you can see there’s other good songs here.

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Hisicanes and hurricanes (Pt. 7)

[Scene Part 7. Prosby still trying to figure out why he is being kidnapped, looks for an escape from the crazy psychopathic Dani and two of her muscle heads.]

It was midnight in Bithlo. Prosby had been tied up, mask on, in the back of a pick-up truck since they left the Panhandle town of Dothan.

Dothan was relatively safe. Bithlo was not.

But because the ocean had covered 70 percent of Florida over the past few hundred years, the only way to get to Orlando was through Bithlo.

Prosby banged his head on the rear view glass to try and get Dani’s attention. She wasn’t driving, one of her steroid enhanced men was at the wheel. He looked about 6’7” and a chiseled 250 pounds. Another one, was quite a bit shorter but probably heavier. As one North American comic put it years ago: His muscles had muscles.

Prosby shook his head. How did this happen?

And then there was Burnees. They were friends in childhood, lovers thereafter. Then their world changed. Hell, everybody’s world changed.

Larger hisicanes and hurricanes, tornadoes with winds off the charts, and the rains that never stopped — except when they stopped… they really stopped.

Last time he saw her, Prosby and Burnees were broke in an ever-disappearing Baton Rouge. They hopped aboard an 18-wheeler and headed west, singing, playing harmonica. Last time he saw her was in California, some godforsaken town. Lodi, maybe? Prosby’s memory was failing him.

He was officially diagnosed years ago, with the little known brain disease called the Woolies, a condition named after Dr. Chapo Wulu, believed caused by radiation exposure. The radiation cultivated killer proteins nicknamed Memory Monsters. Prosby was in early stages but he knew someday his memory would be wiped. On days like this, maybe that’s a good thing.

Salinas! The memory though a late arrival decided to visit. That’s right. Beach town probably underwater now. He remembered that he and Burnees had such great expectations.

But she walked away. ..Anyway.

He never saw her again. He had heard the rumors though. That she was working for the Guardians or hiding from the Guardians. He was glad to hear she was still living nonetheless. He wondered what the witchy woman Dani wanted.

Prosby was snapped out of his reverie by the short muscle head standing over him as the truck came to a stop.

“Hey Popeye,” Prosby said to the man glaring at him. “Gonna whip up some spinach omelettes for us?”

“Shut up unless you want me bounce your head on the street,” said square-muscle.

“Good one, muscle head,” Prosb y said, actually impressed with bicep-boy’s ability to string words together into a sentence.

“Whasssup!” Dani said smiling, emerging from the passenger side, raising her hands and dancing. You two boys introducing yourselves? Big meathead stayed in the driver’s seat looking straight ahead.

Prosby suspected Dani was on cocaine, pharmaceutical.

“I gotta take a leak,” Prosby said.

“Aww nature calls,” Dani said. “You know I may be calling too, soon. As they say, let nature take it’s course.”

She flicked her head to square peg indicating for him to take Prosby for a short walk.

“Stay with him,” she said. “Don’t try anything Prosby, he has orders to kill if you run and he has killed lots of running people.”

“And Prosby, even if you do run and escape the killing machine that is my man here, you’ll be running in Bithlo. The twitching freaks and their dog hybrids will kill you and cut you up for dinner in quick time”

To be continued ...

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I decided to quit driving. How’s that going for me? (Blog version)

This is an opinion/humor column in that the author is of the opinion there’s humor in this column. The views are solely those of Mike Oliver and do not reflect those of AL.com — and especially not the views of Catherine.

I gave up driving some time ago.

As a 59-year-old man living with Lewy body dementia, I believed I was doing myself and others a favor by turning the wheel over.

The view from the passenger side has given me a totally different perspective, onefueled by adrenaline and abject terror.

Every day I gather my stuff together, grab a cup of coffee and hurry outside to the passenger seat. My wife, Catherine, is waiting which I can see but she tells me anyway. She’s in the driver’s seat.

Many days I arrive at my Birmingham office white=knuckled and covered in a nice cold layer of sweat.

“Bye bye dear,” my wife Catherine says as I practically roll out of the car – though she usually slows down a bit.

On those really bad days where my hands are a vise grip on arm rests, she finds it helpful to pull my pinky finger back first in order for the rest of my fingers to relinquish their grip. She learned that in a self-defense class some years ago.

“Aaaaauuuugghh,” I scream.

On this particular day, I wasn’t sure how I went from vise grips to lying on the street. But I popped up, brushed off my clothes and snatched my nearby backpack containing my laptop just seconds before it would have been crushed under the wheels of a 10-ton transit bus.

“That was close,” my lovely wife noticed and felt the urge to verbalize.

You think? Captain Obvious.

I kept that thought to myself. But I continued my silent thought:

Sure it was close but not as close as you came to hitting a garbage dumpster about 10 minutes ago as you tried to shoot the narrow gap on a merge between a car and the aforementioned dumpster.

The dumpster was on my side – the passenger side — and appeared to be coming at me at 50 mph.

“Honey slow down now,” I said gently. “We are coming to a merge here. Um, there’s a merge here. Catherine? We are not going to make that gap. Catherine, seriously the car won’t fit in that space, slow down.”

I think she sped up to get ahead of the car. My voice got a little louder.

“HONEY YOU ARE NOT GOING TO MAKE IT THROUGH THERE!

S-L-O-W T-H-E F-U-D-G-E D-O-W-N

I actually don’t know if I fell asleep for a few seconds or just closed my eyes, whatever my body’s adrenal glands were plain used up. No crash noise did I hear. No scraping the top of the car off by a dumpster sized can opener. Regaining consciousness, my head was on a swivel looking back and front, incredulous that she once again had threaded the needle.

I gathered myself and was almost inaudible. “I did not think you could make that.”

She was humming along with a song on the radio.

She wasn’t even listening to me at this point. I think she was still a bit angry because early in the trip when I yelled ‘Watch Out’ at the top of my lungs. Turns out she didn’t really need to watch out. My bad, sheesh, no need to hold a grudge.

To be fair, I have found that it’s not just Catherine who drives like this. It’s practically every single person who takes me somewhere pulls these scary maneuvers on what seems like every single trip when I am in the passenger seat.

How could this be?

From my new vantage point, maybe I’m coming to some truths about myself and others and the difficulties it is to be more dependent on others.

The passenger side takes me away from my comfort zone and into a world where I have to learn to accept that I am dependent on other human beings.

Yes, the passenger side has given me new perspectives and confirmed a perspective I already suspected:

I AM THE ONLY ONE WHO KNOWS HOW TO DRIVE.

AL.com version here

Mike Oliver can be reached at moliver@AL.com. Read his blog about living with Lewy body dementia at www.myvinylcountdown.com

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Kaleidoscope -388

Kaleidoscope was a pioneering psych rock folk world music band from San Francisco.

ALBUM: ‘Incredible’ (1969)

MVC Rating: 4.0/$$$$

If you like psychedelic banjo music you’ll love this.

Actually, I do. But it’s not for everybody. I became aware of this band because I’ve long been a fan of David Lindley who has put out some fun, eclectic music over the years on his own. And he also has been a fixture in Jackson Browne recordings and performances over the years.

Excellent on guitar, steel guitar, banjo – and assorted string instruments you may have never heard of. In his youth, Lindley won the Topanga Canyon Banjo Contest two years in a row back in tIhe 60’s, according to Wikipedia.

This band, Kaleidoscope, preceded Lindley’s work with Browne. It’s a product of the psychedelic 60’s but what separates it from some in this genre is the highly skilled playing of the instruments and its infusion of world music. And banjo.

It’s also an example of how now and again I decide to buy LPs.

I bought this just about a year ago for a few bucks. I saw it, saw the name David Lindley and pounced. I’ll be doing some Lindley reviews coming up after I finish the K’s .

One of the videos below is “Banjo’ and another is ‘Seven Ate Sweet’ a progressive instrumental in 7/8 time. Enjoy, or, at least, admire.