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My Rx for Dementia

I’d like to put in a bottle what I am doing to fight my dementia for everyone facing what I’m facing.

On this blog, I’m counting down, in photos  and words, the 678 vinyl record albums I collected mainly in the 70s and 80s before CDs and digital took over. In doing so I am reconnecting with my past, and my memory of it. I’m finding forgotten memories. I’m rediscovering good (and bad) music.

And I’m loving it.

Every day is like Christmas to me. What is the next one to review? What surprise and memory will it bless me with. The discipline of writing connects me to my mind in a way beyond speech.

I’m doing this in addition to traditional drug therapy, on which I am   combining a carefully calculated  mix of Alzheimer’s and Parkinson’s medications. That’s because my disease, Lewy Body dementia has symptoms that resemble both degenerative brain diseases.

The problem is that Lewy Body, despite being the second leading cause of dementia after Alzheimer’s, is not well known. Early diagnosis is a key to getting on the right meds because some anti-psychotic medications, used in Alzheimer’s treatment, are contraindicated and dangerous to the Lewy Body patient.  There is no cure, and its cause is unknown.

I am better off than I was a year ago when I was diagnosed. I felt miserable. I felt like I was antsy all the time. My arm would unconsciously slide up my side in the so-called gunslinger mode, a classic Parkinsonian symptom. But I had also had insomnia and REM sleep disorder which caused me to act out dreams, sometimes thrashing, punching and kicking. Not so great when you’re sharing a bed. Those are classic Lewy Body dementia symptoms, including waking hallucinations.

I believe I’m feeling better now because of the medication. But I believe I may also be doing well because of the value that blogging has brought to my psyche. It’s given me something fun to do while keeping my dexterity refined through typing and my memory honed by remembering and writing about remembering.

Will the meds slowly quit working, as frequently happens? Will I be unable to type at some point? That ability already fluctuates. My writing is often more coherent than my speech, I know that. Just an honest observation. In live conversations with people, I often forget names or crash my train of thought. I have to thumb through the bins in my brain to find the right words.

It’s one of the reasons I came out publicly with my disease because I want people to know what’s going on when they talk to me and not be afraid to ask me how I’m doing living with dementia. “Very fine thank you,” I say. “And what’s your name again?”

My friends and colleagues and many others I don’t know so well know it’s no sweat that I can’t remember something right away.

So long before the dementia diagnosis I had this idea of counting my records down and selling them one-by-one on eBay. It was, to be honest, a good argument over the years to thwart the pressure by my wife, Catherine, to get rid of the precious vinyl. But as you are hearing it is becoming much bigger than that. It’s a treatment. And it is also a written legacy that my loved ones can read to get a dose of me after I’m gone. If they want that dose. My beautiful daughters, young women, Hannah, Emily and Claire, don’t seem too too interested in the blog now. (Whaddya mean  you don’t  want to read my 1000 word dissection of the Allman Brothers’ influence on Southern rock and jam bands?).

in the future, something may resonate (or not). But i would like to leave something where they can remember and know who i was before i become not who i am.

My records represent many hours perusing record bins and many quarters and dollars, usually bought used or as cut-outs. They range from R&B, classic rock, hard core country, punk, funk, soul, New Wave, comedy, classical, folk, Americana, reggae, alternative, and jazz, both old school and modern.

Since I started in September, I have done 64 record reviews in 67 posts. Some of those posts had no album reviews as they were about other things I’m trying to write about such as basketball, journalism, and Lewy Body dementia. Sometimes, especially if I have multiple records from the same artist, I review them in the same posts.

So I have 614 reviews to go, not counting new vinyl additions my family and friends are giving me in a loving gesture to add length to the reduction in my life (and its quality) that Lewy Body will try to make happen.

That’s because I have vowed to finish this blog out.

I’m loving it.

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

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Who Am I?

Who am I?

This is a philosophical question.

In song, The Who asked ‘Who are You’? Black Uhuru asked ‘What is Life’? Frank Zappa said, ‘Help I’m a rock.’

Some of you have pondered this question, I’m sure. Others think it is silly because it has no set answer.

As some of you know, I have Lewy Body dementia. My brain neurons are dying, being killed over time by excess  proteins. There is no known cure and its cause is unknown. But it’s the second leading cause of dementia after Alzheimer’s.

So the question for me is pertinent .

As I have written earlier I am literally, albeit slowly, losing my mind. Does that mean every day I am a little less of myself? Or that I am myself at all?

What if my perception of myself is widely different from what others see. It could be a horror movie: ‘Invasion of the Alpha-synuclein Proteins.’

David Hume

Justin Caouette posting on the blog A Philosopher’s Take, asks if we rip a page out of a book, is it the same book? How about a chapter? How about if you blot every word out with Wite-Out?

Philosopher David “Hume says that all that “we” are is a bundle of perceptions at any given reference point, according to Caouette. “The ‘self’ for Hume, when perceived as something fixed through time, is an illusion. Strict identity claims are simply false when talking about ourselves as persisting through time. The bundle of perceptions changes with each experience, therefore, there is no one enduring ‘self’ that persists through each experience.”

So minute by minute we change. But is he saying we are not who we are two minutes earlier? Yes and no. I think.

Here’s more; “When I say “I will go home in an hour” I’m referring to the bundle of perceptions that is related by past experiences to the bundle that will walk out the door. I may be wrong in my claim that ‘I’ will leave in an hour (I may take longer or turn in sooner, but, I will leave at some point),  the ‘I’ is simply a quick and fast way of identifying who will walk out the door.”

So I’m following this, sort of. He brings up Alzheimer’s (I wish Lewy Bodies would be mentioned in conjunction with Alzheimer’s as another leading cause of dementia.)

“One need not have a fixed memory or even a good one to be a person or a self on this account. This gets us around those who have Alzheimer’s. They are still persons on this view.”

That’s nice.

For me this is all a Catch-22 because I am actively losing the thing, my mind, which  interprets my perceptions, of which I am a downsizing ‘bundle of.’

I may soon  be asking ‘Who are you?’ to loved ones. But I won’t be meaning it in a philosophical way.

So before this part of me goes away, I am thinking a lot about who I am..

Will Durant, channeling Aristotle in his definitive ‘The Story of Philosophy’ said ‘we are what we repeatedly do. Excellence, then is not an act but a habit.’

So who are you? Who am I?

Parent, weekend athlete, storyteller, son, daughter, music lover, prankster, hiker.

I do know this:

I am Lewy.

 

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America– 674

ALBUM: Holiday (1974)

Gotta hand it to these guys, the album starts with a short instrumental so soft that it practically stage whispers: Here comes some more soft rock.

Don’t mix this opiodic music with alcohol or you may have to call a somnambulance.

Seriously, ‘Tin Man’ and ‘Lonely People’ are two soft-rock mainstays, in the repertoire of every small club singer with an acoustic guitar. With George Martin producing, one can almost hear a little soft-rock Beatles with laid back vocal harmonies and pleasantly hooky melodies. But then the lyrics let you down:

This is for all the lonely people
Thinking that life has passed them by
Don’t give up
Until you drink from the silver cup
And ride that highway in the sky

Hmmmm.   Drink from the silver cup? Ride the highway in the sky?

If you are going to get George Martin to produce the album and do lonely people gibberish, give me something more tantalizing and obliquely weird like: ‘Wearing the face that she keeps in a jar by the door.’

But hey, it’s America.

Look at all the lonely people.

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

(A betterAmerica choice not on this album):