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New days ahead

It’s one of those slowed down beautiful Fall days. Yellow leaves fall and float against a cloudless blue sky.

It’s about room temperature. Except you get a little leftover summer breeze if you sit outside.

The day is idyllic but I can’t settle my mind. A news alert warned of a wreck that shut down two lanes of I-65. My middle daughter, Emily, went to a wedding in North Carolina over the weekend and would be driving back. Worried mind, I called her. She was fine. She’s in her early-30s for goodness sakes but worries take hold.

No matter how old, you worry.

This is all a long way of telling you I had another grand child this week. Eloise Mae Archibald, a beautiful baby girl. The sweet petite baby was 6-pounds 3-ounces, birthed by my daughter Claire. Ramsay Archibald, son of my friend and colleague John Archibald, is the father.

Her Wednesday. Oct. 28, birth, comes on the heels of Isaac Michael Turner born April 13 in Korea where mother, Hannah and father, Tom Turner live. We were blessed to have been able to see Isaac thanks to my sister, Julie, who bankrolled a surprise visit to see us and other friend and relatives.

Seeing the babies and watching them and holding them did something to me. It reinforced my commitment to fight this disease Lewy body dementia, which I have had now for six years. Life expectancy after diagnosis is on average 5 to 8 years.

The grandchildren reminded me of the fragility and perpetual nature of life’s cycle, death and rebirth. It also showed me to be wary of another cycle, the spin cycle of worry.

Everything is going to be OK.

There won’t always be blue skies, but when there are, you appreciate them with every fiber in your being.

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RIP Gus

Gus is dead.

The rust-colored family dog, a poodle mix, breathed his last breath Monday morning, moments after a veterinarian injected him with a lethal drug.

He was 17.

I wasn’t there at the time of death. I couldn’t bear adding anything to the trauma it brought to me. As someone living with Lewy body dementia, things like this give me a double- wallop.

My wife, Catherine, who was at the clinic in Avondale, said Gus died peacefully about 8:30 a.m.

I’ve been through this before. My father is a retired veterinarian. Molly, my yellow Labrador, was euthanized in 2012. I was stroking Molly when the injection was made, and Molly’s eyes went from deep pools of consciousness to click and fixed.

I wrote about my experience with Molly and then later wrote about Gus’ health declining . Euthanizing Molly was an easier call to make than Gus. Molly went from walking to not walking in just a couple days. She lie sprawled on the kitchen floor wheezing, likely due to heart failure. We carried her literally to the car to go to the vet.

Gus’ situation made it more difficult to make a call. At 17 Gus was already well beyond life expectancy but he was not senile and he was fairly mobile. He had a tumor larger than a golf ball on one side of his chest. It was benign. His back legs were in various stages of paralysis and climbing the stairs at night to come sleep on his dog bed was becoming more arduous. More than once he slipped and rolled down those steps. Only to pop up and try it again.

The newest deficit was incontinence. Unable to make it to somebody who would let him out, Gus ended up leaving ‘surprises’ for us nearly every morning. His eyes were clouded with cataracts, and as far as I could tell he was about 90 percent deaf. To hear you, Gus had to see your face, kind of like a lip reader.

Counting family pets growing up, I’ve had more than a half-dozen dogs during my life. Gus was probably the second smartest one I’ve had. Maggie, a dog we had in the 1980s, rescued from the Etowah County dog shelter near Gadsden, was a mixed border collie and literally could understand everything you said. Catherine rescued Gus from a shelter in San Francisco. Gus’ nickname was psychodoodle for his frenetic energy driven behavior in earlier years.

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Dunk brings it home for Lewy body fight

The game was knotted at 18. It had been getting a little intense, some might even say ‘chippy.’

The next bucket would win.

Every  shot was fiercely contested. Most shots brought shouts of ‘Foul,’ and the ensuing usual arguments. 
“You’re holding.” “He traveled.” That’s to be expected when the two best teams in a field of 17 are duking it out.

It was the finals Saturday morning, Aug. 20, for the 2022 MikeMadness’ basketball fundraising event. Lives were on the line.

Say what? MikeMadness raised a Madness record, about $16,000 for research and awareness of Lewy body dementia, a progressive brain disease that is always fatal.

I have the disease. So they were playing for me and the other 1.4 million affected by the disease in the U.S.


Jim Bakken/UAB

The event brought 100’s of family members, friends, and curious spectators and thousands of dollars (we are still awaiting official tallies.)

So it all came to down to this, 18-18. Nineteen wins it.

Jim Bakken, chief communications officer at UAB, had the ball in his hands at the top of the key.

“You have no idea how much I look forward to Mike Madness,” Bakken said later. ” Getting to play in it this year with my son and showing him why the day is so special was really meaningful to me.”

His son, Jack Bakken, a 16-year-old hoopster at Mount Brook High School, was on dad’s team. And he was a chip off the old block: long and lanky, only a few inches shorter than his 6′ -foot-6-inch father.

The University of Alabama at Birmingham and the UAB Student Rec Center have hosted Mike Madness for four of the last six years since 2017. COVID thwarted attempts in 2020 and 2021.

MikeMadness has raised a total of more than $55,000 with the the four tournaments.

“So much of what UAB is about – like health and wellness, research and serving the greater good – is embodied in the tournament, and we are honored to join Mike in his fight.” 

Jim Bakken splits the double-team at MikeMadness, a fundraiser to find a cure for Lewy Body dementia. The3X3 basketball event at UAB Rec Center was all tied up and at game point when Bakken drove the lane and slammed down a vicious dunk. (Photo: Trisha Powell Crain)

But what about the game? The UAB team and the Power Ballers have met before in Mike Madness finals. They are usually hard fought games, and this was no exception as it came down to the wire.

”It is a bit of a blur,” Bakken remembers.”I was actually planning to pass to a younger teammate but saw an opening to go left and create some separation. I decided to drive hard and see what happened. As a 44-year-old weekend warrior, my athleticism and ability to drive hard can be pretty inconsistent, but luckily I caught a little burst of adrenaline. ”Without that, I’m pretty sure it would have been a boring but fundamentally sound left handed lay-up.”

Instead it was a slam dunk amid three defenders. The crowd went wild.

NOTE: Early post of this story had the wrong date for the tournament. Correct date was Aug. 20, 2022. Also corrected to say 17 teams participated. For more information see www.myvinylcountdown.com and the Lewy body dementia association LBDA.org.

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Basketball and me

Basketball has long been my measuring stick for how my disease was affecting my game.

And no, I don’t mean that I make up a little game and say to myself if I can make 5, 3-pointers in a row I am cured.

But I did keep close tabs on how Lewy was affecting the various skills that basketball requires. Eye-hand coordination, stamina, and lateral movement. Could I still hit from long distance without too much overcompensation for lost strength? Could I still dribble drive around someone?

Notice how I am writing this, in the past tense. I ‘did’ keep tabs: That’s because sometime in April I made the call to take me out of the game — to quit my Old Man Hoops league playing in a full court run in a church gym in Irondale.

Since the 2016 diagnosis of Lewy body dementia, it was a slow but steady ride down. I could have easily discounted the changes to age — I was the oldest player out there. I am currently 62. I so want to dunk on Lewy.

But Lewy is a master of defense. There is no cure.

In the early years post diagnosis, 2016-2018, I noticed little deterioration in my game. In the middle years 2019-2020 I found my shot was short. and I got winded easier. I sucked it up and created a slogan “Step Up” to remind myself to take a step or two closer than 3-point land. It worked well enough to make me think I could still contribute.

But, alas, as the leaves turned colors and died at winter’s entrance late last year, it was abundantly clear I could no longer play.

I think I tried playing in March or April, and it firmed up my decision.

Now I’m into new challenges like buttoning a shirt, writing on the computer, tying my shoes.

The disease is similar to Parkinson’s disease in which proteins produced by the body form in the brain. The proteins over time kill off enough of the 100 billion brain cells (or neurons) in the average human brain as to be debilitating and ultimately fatal.

This brings me to really the most important reason for writing this. We are having our Lewy body fund-raising 3X3 MikeMadness basketball tournament this coming Saturday (Aug. 20) at UAB Recreation Center starting at 9 a.m. To find out how to register and about the after party at Cahaba Brewing go to MikeMadness.org

This will be our fourth MikeMadness since 2017; Covid knocked us out for 2020 and 2021. We’ve raised about $40,000 for research at UAB and and the Lewy Body Dementia Association, (LDBA.org) Also, see www.myvinylcountdown.com

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Saddest story ever

That this war could be the backdrop to my own death disturbs me greatly.

The horror is visual and visceral as brought in bytes and bits bounced off satellites. It really has me rattled.

I was diagnosed five years ago with Lewy body dementia, a degenerative brain disease characterized by memory loss and tremors.

I’m trembling right now. I feel the whole world is trembling. Not in fear but rage, and sorrow.

For some reason I got this ‘legendary’ Ernest Hemingway story stuck in my mind. Challenged to write the shortest story ever, Hemingway apparently came up with:

For Sale. Baby shoes. Never worn.

Legend has it, though Snopes doubts it — Hemingway jotted those six words down on a beer napkin and walked out with $10 from each member of the group.

Baby shoes, kids-sized shoes, adult-sized shoes. There’ll be closets full of these shoes in Russia and Ukraine — some never to be worn again.

I’m thousands of miles away but I can’t shake the shakes and the disbelief. And it makes me so sad on many levels. I feel like I’m leaving a world for my daughters that is so messed up.

It’s always been like this, you say? Wars, plagues, exploitation, greed and discrimination. Greed? Did I mention greed? Maybe I’m the guy who keeps beating his head against the wall expecting a better result. Some tiny shred of evidence progress is being made in human history.

Instead, we see and hear, through our gadgets, teenagers lining up to get their very own Kalashnikov and an ill-fitted helmet. We see brigades of men and women bustling in a room where they pour gasoline into beer bottles and stuff it with a cloth. A Molotov cocktail.

We see daughters and sons and mothers crying for their fathers at the train station as evacuation was not allowed for men over 18.

If challenged, I, too, can come up with a six-word story.

For sale, broken heart, never mended.

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How to fight a fatal brain disease with vinyl records (slight return)

I just finished my vinyl countdown. And I’m alive.

Do those two things correlate?

Not obviously, but probably.

Five years ago, after receiving the diagnosis of Lewy body dementia, an incurable degenerative disease that has similar traits to Alzheimer’s and Parkinson’s, I vowed to review my 678 vinyl records in a blog before I died.

With my post today of ‘Tres Hombres’ by ZZ Top, I have fulfilled my vow. The blog is www.myvinylcountdown.com. This blog version (slight return) is slightly different than the AL.com version.

Three ways the blog helped me slow my progression:

1. Hand-eye coordination. Finger acuity. Using my fingers everyday to type helps my memory, finding the right keys and spelling the words right.

2. Finding music. Intellectual acuity. Hearing songs you had forgotten about or rarely played. Busting out albums still in the shrink wrap. Again a memory challenge as the past comes rushing in. Finding some hidden gems worth $$$. Listen to Sonny Rollins and Thelonious Monk.

3. Organizational acuity. Do you want to organize by alphabet, or genre? Abba to Zappa, or bluegrass to Northern soul?

Thinking back to the day I started this blog (Sept., 16, 2017), I can say I really never thought I’d make it. I wondered about starting an office pool instead — but that would be just wrong.

This is more than an assessment and accounting of my records. This is about using blogging or any hobby as mental exercise and posting publicly to bring awareness to this little known, but not rare, disease.

At the time I made this pledge I didn’t know how long I had before dying — and still don’t.

The numbers on average lifespan after diagnosis are different depending on which source is used, but I was working off of 4 to 8 years. The Lewy Body Dementia Association rightfully points out that every person’s experience is different and some die 2 years after diagnosis and others keep on keeping on for 2 decades.

So I’m at 4 years three months with the blog and about 5 years with my diagnosis. I’m thankful for each new day.

I’ve been through some tough times when hallucinations consumed me. There was a period of time, weeks, months in 2020 when I couldn’t post anything, and I didn’t think I would crawl out of it.

It seemed as if I was living in another dimension or universe.

In my hallucinations, my house was not my house. Depending on the day, it was a counseling center or physical therapy operation where amputees would work out. Then at night it would turn into a research facility where I was the subject of their studies in a room with glass walls for observation and sometimes it was a nightclub.

I was talking to invisible people telepathically. (Wow! I never in a million years thought I’d write that sentence.)

I got to know the other people, or beings, and would engage them in these telepathic conversations. One time I asked Tom, — my son-in-law, — who is British but not an alien, I can assure you — to clear out what I thought was a party going on in the basement.

I went down and began talking to a being whom I could see right through. I asked who he was, where he was from and who all the others are. (It was kind of like the bar scene in ‘Star Wars).”

He said they, like him, were travelers made up of organized energy from the universe; he said something about radio waves and virtual reality. It made total sense when he told me. Now I can’t remember what seemed so real, and what I do remember, I don’t understand. But the general concept was that through virtual reality machines, people could leave their body at home and travel the universe. (Wasn’t this the plot of the Matrix?)

I wandered around the basement-turned-juke-joint full of floating apparitions. An incessant din of bells and bellows came from the elaborate video arcade games. The furniture was alive. I left the basement and came back after a while and it was cleared out. I thanked my puzzled looking son-in-law for shutting it down.

That’s just a few of the hallucinations that made up my days, full immersion hallucinations I call them. I’d also get less complex hallucinations such as a mouse running across the floor, or seeing people’s faces in tree trunks. Once I saw what I thought were people breaking into my car, I ran out, nothing there. But then I looked up and saw them laughing from across the street. It was a hallucination.

I started to learn, or think separately when hallucinating, which helped me control them in keeping my sanity, I would tell Red John, my nemesis in much of this, that he is nothing, that he was not real. It would drive him crazy.

On the medical side of things I started using a new type of medication called pimavancerin, or its commercial name NuPlazid. For me, it was nothing short of a miracle drug.

But that’s only one part of slowing down these rogue proteins that are attacking my brain.

Once the hallucinations stopped I could better figure this out, continue to exercise and eat sesame seeds (supposedly good for brain health.)

I give a big part of my success at keeping the demons at bay with the blog. I can’t tell you how many times I have had to fight myself just typing these words. The Parkinsonian symptoms of the disease make it feel like there are hidden force fields. Getting out of bed being suddenly stuck in the force field and can’t move until I bring my mind back around so its focusing on the task.

Lewy body dementia, like Alzheimer’s and Parkinson’s with Dementia, involves the destruction of brain cells by a naturally occurring protein. The protein, called, alpha-synuclein, gets into places of the brain it doesn’t belong, leaving trails of dying brain cells.

But you have, by some accounts 100 billion brain cells, and many aren’t being used, brain researchers say. I’m working by just thinking about it. I imagine turning those brain cells into replacements or helpers to the ones I have left. Researchers suspect that’s what happened in the renowned Nun’s Study where they found extensive evidence of Alzheimer’s disease in several nuns, including Sister Mary, who showed no visible symptoms while alive. But Sister Mary’s brain was marked by lesions, a sign of Alzheimer’s severe enough that it should have affected her cognition. Yet Sister Mary continued her extensive reading, daily walks, knitting. She lived to be 100.

That’s what I want to do. (No not become a nun, but live to 100).

The symptoms of these diseases can be similar, making diagnosis more difficult. But in general, if your first and early symptoms include tremors, foot shuffling but no significant cognitive decline, you likely would receive a Parkinson’s diagnosis; if you are having hallucinations, night terrors, and significant memory loss you would likely get a Lewy body diagnosis. Another protein altogether is involved with Alzheimer’s disease, which also destroys the brain. I was first diagnosed with Parkinson’s before I got a Lewy body diagnosis.

What’s Next?

I’m going to keep the blog up indefinitely. I have a lot more to write about. I’m going to stay active raising awareness for Lewy, and maybe we’ll get past this COVID thing so we can continue our Mike Madness basketball tournament, which raised more than $30,000 in its three-year tenure before COVID shut it down. And my music? What to do with all these albums. I’m still working on that. Oh yes, and before I go I am reminded of a Blood Sweat and Tears song:

When I die and when I’m gone/ there’ll be one child born in this world to carry on, to carry on

I just found out, I’ll be a first-time grandfather in May.

My daughter, Hannah, and her husband, Tom, are expecting a baby boy.

How’s that for a reason to keep on keeping on.

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King Sunny Ade to ZZ Top

You are invited to peruse my 678 reviews plus about 100 other posts on a variety of topics. The countdown posts are somewhat arranged alphabetically from African musician, King Sunny Ade, to ZZ Top. The collection, heavy on the pre-CDs-era of the 60s, 70s, and late 80s covers a range of musicians and bands and genres from Led Zeppelin to Carole King, from George Strait to R.E.M. from Sting to the Scorpions.

Also there’s a button on my home page that reads: ‘His and Hurricanes.’ It’s my playful parody of what the world may be like in the year 2525 (if man is still alive, if woman can survive). I worked on it for about a year, dashing off silliness when I had time, until I stopped to figure out an ending. I haven’t resumed it yet so this may also be something to finish now that I’m done with the big ticket item.

Lastly, I’d like to give credit to AL.com data reporter Ramsey Archibald for the graphic that is my home page. He used albums from my collection to make that colorful collage of record covers.

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The Zombies — 4

ALBUM: Odessey & Oracle (1968, RE: 2017)

MVC Rating: 5.0/$$$$$

Although Frank Zappa, whom I reviewed in my previous post, skewered the psychedelic scene, he might find the Zombies a little more difficult to do that to than others in this genre.

Why? Because the Zombies were good, and ‘Odessey and Oracle’ is an album that transcended the psych genre with its whimsical, melodic songs and cohesion.

The songs are perfectly arranged. The only glitch in the works is the album’s name spells “Odyssey” wrong. (Maybe they meant to do that but it sure kept my spell-checker busy.)

The most familiar and probably the best song here is ‘Time of the Season’ with it’s memorable refrain:

What’s you name? Who’s your daddy?

But there’s not a bad song in the bunch. It is a little on the short side but that’s better than too long– as in Iron Butterfly’s monotonous In a Gadda Da Vida, to name a random psych album from that era. The title song was 17 minutes –a whole album side, whereas 17 minutes of Odessey will get you six songs per side.

Notable songs on here include ‘Changes,’ ‘This Will be our Year,’ and, my personal favorite ‘Hung up on a Dream.’

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Zager & Evans– 10

ALBUM: Zager & Evans (1970)

MVC Rating: 1.5/$$$

‘In the Year 2525’ was big on the radio in 1969. The sweeping end of the world epic sounded like nothing else.

In the year 2525, if man is still alive, if woman can survive, they may find …

Turn it up, we are all going to die.

While some liked to make fun of the song, it was/is wildly popular. Some even called it prophetic. So what happened to Zager & Evans? One-hit wonders. I was curious, especially after finding and buying their follow-up album in a thrift shop. It had their follow-up single to 2525, a little ditty called ‘Mr. Turnkey.’

Therein lies a clue as to why they never burned up the charts again. The song was about a rapist who nails his hand to the wall in jail. As blogger Ira Brooker, tongue in cheek, noted:

Sadly, pop audiences inexplicably failed to embrace rape and self-mutilation and Zager and Evans quickly faded into obscurity.

But their hit, 2525, first recorded on a small regional label in Nebraska lives on.

In the year 7510, if God’s a-coming, he ought to make it by then, maybe he’ll look around himself and say ‘Guess it’s time for the judgment day.

Oh oh whoa oh.

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Robin Williams — 11

ALBUM: ‘Reality. What a concept’

MVC Rating: 4.0/$$$

I’d purposely passed over this and my other comedy records thinking I would keep it strictly to music. However, given that it’s Robin Williams who died by suicide after living with undiagnosed Lewy body dementia, it seemed like he belonged on this list. And I have a Robin Williams’ comedy album — I believe his first one.

I mean after all, it is why I am doing this: to raise awareness of this relatively common but little known brain disease. Robin’s case has shined a light but much more research is needed. And this album puts his super sharp mind on display.

Little did I know that 40 years after buying this album, I would meet his widow, Susan Schneider Williams, at a summit on Lewy body dementia in Las Vegas. I told her it the not knowing what is wrong with you that is the hardest part.

And even when we know what it is, we’re not sure what is happening because the disease can leave thoughts muddled..

The ‘reality’ album came out in 1978, the year I graduated from high school in Athens, Ga. I’m not sure what prompted me to buy it, other than he was an up-and-coming comedian with hilarious appearances on Johnny Carson and, later, David Letterman.

I thought this album was funny but not really as funny as Steve Martin’s comedy record, ‘Let’s Get Small,’ one I also had. There is one routine on the Williams’ album that shows off Williams’ imagination and rapid fire brain. It’s called ‘Come inside My Mind’ and it is classic Robin Williams, letting you peak inside his head as his jokes fail doing a stand-up comedy routine. Mayday mayday. His brain shouts at him.

Here is a nice list by Rahul Bansal of 41 inspirational quotes from Robin. See if you don’t agree that some are eerily prophetic.

OK back to the Y’s and Z’s as we finish this on out.

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The Youngbloods — 12

ALBUM: The Best of the Youngbloods (1967)

MVC Rating: 3.5

‘Come on people now, smile on your brother, everybody get together, try to love one another right now.’

That lyric is probably one of the most remembered lines in rock music. Quick, who sang it?

Well, you’ve already got the answer in the headline. The Youngbloods weren’t the first to publish; their version was the most popular. But even that requires explanation. The Kingston Trio recorded a version in 1964. The Youngbloods did their version in 1967 but only went to No. 62 on the Hot 100 charts.

Meanwhile, the song was used in a commercial and re-entered the Hot 100 in 1969, climbing all the way to No. 5.

Singer Chet Powers wrote the song, but he is probably best known for his work using the pseudonym Dino Valenti in Quicksilver Messenger Service. He wrote and sang two of Quicksilver’s biggest hits ‘Fresh Air’ and ‘What’s About Me.’

‘Get Together’ has been covered many times. Nirvana used the famous line in their sarcastic intro to ‘Territorial Pissings.”

According to Songfacts.com:

“Get Together” stayed in the zeitgeist, with covers by Linda Ronstadt, The Sunshine Company, and The Staple Singers in 1968, but it didn’t break through as a hit until 1969, when The National Conference of Christians and Jews distributed it to radio and TV stations to support Brotherhood Week.”

For a band now considered one-hit wonders, the Youngbloods were good beyond their hit; The ‘Best of’ includes the hit along with popular album cuts and not-so-successful singles. Youngbloods lead singer Jesse Colin Young went on to have a moderately successful music career.

NOTE: An earlier version of this post had Chet Powers in the band. He wrote the song, but was not in the Youngbloods. He played with Quicksilver Messenger Service under the name Dino Valenti.