So, I’m at an historic mile-marker in my quest to review the 678 vinyl records that I bought or were given over the past 50 years.
I’m down to 100.
I’m doing this to raise awareness of Lewy body dementia.
My goal is to finish before I die of that degenerative brain disease.
Starting with 678, I’ve done 578; I have 100 to go.
How much time I have is unknown. I’m 61, diagnosed in 2016. The average life span is 4 to 8 years after diagnosis. I’m into my fifth year and have every intention lasting another five years or at least until I’ve finished this project.
The terminal illness, for reasons unknown, causes a proliferation in the brain of naturally occurring alpha synuclein proteins, which willy nilly coat parts of the brain, smothering brain cells. Parkinson’s disease works in the same manner, only the killer proteins affect different parts of the brain, resulting in varying symptoms.
Given time, in many cases, near the end of its disease stage, a Parkinson’s patient will look just like a Lewy body patient.
Upon hearing the bad news I had Lewy body dementia, I came upon this idea to count down my beloved record collection. It’s a hodgepodge for sure and certainly not a high end collection. Lots of cut-outs and promotional records. I tended to drift toward the bargain bins.
One of my very first full-fledged LP’s (meaning not a 45) was Creedence Clearwater Revival’s ‘Cosmos Factory.’
My father gave me that record, not that he was a big fan but he saw how much I enjoyed their songs on the car radio. Remarkably, they are a band whose straight ahead rock and roll from the 60s and 70s more than holds up today.
I also had a Jackson 5 album, ABC, at about this time. Jackson was 11 when that album was released; I was 10.
In my parents’ childhood, there really wasn’t rock and roll unless you knew how to pick up a blues station on the AM dial at night.
The radio stations were more diverse when I was 10 or 11 than they are now. Terry Jacks’ ‘Seasons in the Sun’ would come on right after “Hey Jude,’ followed by Tony Orlando and Dawn’s ‘Candida,’ then Wilson Pickett doing ‘Land of 1,000 Dances.’
My mother took me to guitar lessons for a few months and I learned three chords. I just wasn’t musical in that sense but I loved music. I still dance like no one’s watching, even when people are watching. Although my dancing is less fluid rhythmic swaying to the beat and more episodic spasmodic dystonia.
‘No,’ I reply, unable to stop. ‘It’s doing me.’
Certainly the disease has affected my life and our family system. Heck, the effects have even trickled down to our dog, Gus, a yellowish poodle mix who at 15 or 16 seems to be hanging around for me. Sometimes we just sit and stare at each other like we’re building a Stareway to Heaven.
But until that’s completed I am hanging in there and learning the best practices on living with Lewy Body Dementia.
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They say life is short but I say life is long
Full of pretty faces and beautiful songs
You can think too much about moseying along
It’s best to stay calm
Life is long, life is long, life is long
–Jared Mees, ‘Life is Long’ from the album Life is Long.
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I don’t drive anymore after an accident several years ago. More recently, as in three weeks ago, I had to get my head stitched up after fainting.
Only six stitches, but the fainting is a condition –orthostatic hypotension — I’ve warned about on this blog. I was not following my own protocol when I stood up quickly from the couch and began walking toward the stairs. I kerplunked and my head hit the floor. So we are escalating my attempts to thwart this blood pressure problem. More salt in diet. More fluids in diet, standing slowly, deep breathing and putting my head down to feel the blood rush back to my brain.
We take my blood pressure frequently to monitor. I think the typing of these blog posts is stimulating my brain in a way that is slowing my Parkinonian effects, as well as my cognition effects. I think putting together words in sentences and paragraphs are all stimulating my brain. I think looking for a record that I just saw yesterday and now can’t find even though I know it was there and it makes me want to scream is stimulating my brain. It’s certainly raising my blood pressure, which is good also!
It gets tricky when you are looking for that one record which could be in one of three rooms, on two levels. They were fairly well organized alphabetically when I started.
I’ve become more philosophical about the disease. Getting the diagnosis was such a shock to the system but not a shock that I really let anyone see. I’d make jokes about it (still do). ‘We all die sometime’ became the cliche’ of my life.
Years ago I lived every day as if I had a month or so. Now the years have come and gone; my daughter Claire got married, my daughter Hannah moved here from Korea with her husband; and my daughter Emily moved to be close to me — all not knowing how long Dad had.
The years went by.
I still don’t have an answer to the question: If I had to do it all over again, what would you change?
(BTW it took me a good minute to find the question mark sign on my keyboard just then. That ‘s how the memory effects of Lewy body manifest themselves in little ways. But finding it was a mental exercise or, put another way, it was exercise for the brain.)
Just about a year ago, I went through a hallucinatory stage where I became immersed in another world: I communicated with other beings and talked to people no one else could see. I retired from my job at AL.com. Fixed the hallucinations for now. And here I am writing still on this blog I started four years ago.
I’ve written 578 album reviews, all available right here right now on this blog, www.myvinylcountdown.com
One hundred to go.
No, I still don’t have any more understanding of how we all ended up here on this big ball of mud, third from the sun.
While my disease has reinforced my belief that the universe can be a soul-crushing crucible and that its understanding is beyond human reach, I gotta believe God is good.
I gotta.