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.

————-

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.