How I fight a deadly brain disease with vinyl records

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

Are these two things correlated?

Not obviously, but probably.

Five years ago, after being diagnosed with Lewy body dementia, an incurable degenerative disease that has traits similar to Alzheimer’s and Parkinson’s disease, I vowed to see my 678 vinyl records again. in a blog before dying.

With my article today on ZZ Top’s ‘Tres Hombres’, I have fulfilled my wish. The blog is www.myvinylcountdown.com

Three ways blogging has helped slow my progress:

1. hand-eye coordination. Sharpness of fingers. Using my fingers every day to type helps my memory, find the right keys and spell words correctly.

2. find music. Intellectual acuity. Hear songs you forgot or rarely play. Take out the albums still under plastic film. Again, a memory challenge as the past rushes in. Find hidden gems worth $$$. Listen to Sonny Rollins and Thelonious Monk.

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

Thinking back to the day I started this blog (September 16, 2017), I can say that I never thought I would get there. I wondered if it was possible to create a desktop pool instead – but that would just be wrong.

It is more than an evaluation and an accounting of my files. It’s about using blogging or any hobby as a mental exercise and posting publicly to raise awareness about this little-known, but not uncommon disease.

At the time I made that promise, I didn’t know how long I had before I died – and I still don’t.

Figures on average life after diagnosis are different depending on the source used, but I was working on 4-8 years. The Lewy Body Dementia Association rightly points out that each person’s experience is different and some die 2 years after diagnosis and others go on to live for 2 decades.

I am therefore at 4 years three months with the blog and about 5 years with my diagnosis. I am grateful for each new day.

I went through difficult times where hallucinations consumed me. There was a period of time, weeks, months in 2020 where I couldn’t post anything, and I didn’t think I would get out of it.

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

In my hallucinations, my house was not my house. Depending on the day, it was a counseling center or a physiotherapy operation where amputees trained. Then at night it turned into a research center 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 telepathically to unseen people. (Wow! I never thought I’d write that sentence in a million years.)

I got to know other people, or beings, and engaged them in these telepathic conversations. I once asked Tom, — my son-in-law, — who is British but not an alien, I can assure you — to clear up what I thought was a basement party.

I came down and started talking to a being that I could see through. I asked who he was, where he was from and who everyone else was.

He said they were, like himself, travelers made up of the organized energy of the universe; he said something about radio waves and virtual reality. It made perfect sense when he told me. Now I can’t remember what felt so real, and what I remember, I don’t understand. But the general concept was that with virtual reality machines, people could leave their bodies at home and roam the universe. (Wasn’t that the plot of The Matrix?)

I wandered around the basement turned into a 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 emptied. I thanked my puzzled-looking son-in-law for closing it.

These are just a few of the hallucinations that marked my days, total immersion hallucinations as I call them. I also had less complex hallucinations like a mouse running on the ground or seeing faces in tree trunks. Once I saw what I thought were people breaking into my car, I fled, nothing there. But then I looked up and saw them laughing across the street. It was a hallucination.

I started to learn or think separately when I was hallucinating which helped me control them to keep my sanity I was telling Red John my nemesis in many things he was nothing , that he was not real. It would drive him crazy.

Medically, I started using a new type of drug called pimavancerin, or its trade name NuPlazid. For me, it was nothing less than a wonder drug.

But that’s only part of slowing down those rogue proteins attacking my brain.

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

I give a lot of my success to keeping the demons at bay with the blog. I can’t tell you how many times I had to fight just typing those words. The Parkinsonian symptoms of the disease give the impression that there are hidden force fields. Getting out of bed suddenly stuck in the force field and I can’t move until I bring my mind back to focus on the task.

Dementia with Lewy bodies, like Alzheimer’s disease and Parkinson’s disease with dementia, involves the destruction of brain cells by a natural protein. The protein, called alpha-synuclein, gets into places in the brain where it doesn’t belong, leaving traces of dying brain cells.

But you have, by some accounts, 100 billion brain cells, and many are unused, brain researchers say. I just work thinking about it. I imagine transforming these brain cells into replacements or aids to the ones I have left. Researchers suspect this is what happened in the famous Nun’s Study, where they found ample evidence of Alzheimer’s disease in several nuns, including Sister Mary, who showed no visible symptoms of her living. But Sister Mary’s brain was scarred with lesions, a sign of Alzheimer’s disease severe enough to have affected her cognition. However, Sister Mary continued her intensive reading, her daily walks, her knitting. She lived to be 100 years old.

That’s what I want to do. (Not to become a nun, but to live to be 100).

Symptoms of these diseases can be similar, making diagnosis more difficult. But in general, if your early symptoms include tremors, twitching, but no significant cognitive decline, you’ll likely be diagnosed with Parkinson’s; if you have hallucinations, night terrors, and severe memory loss, you will likely be diagnosed with Lewy bodies. Another protein is implicated in Alzheimer’s disease, which also destroys the brain. I was first diagnosed with Parkinson’s disease before being diagnosed with Lewy bodies.

And after?

I will keep the blog indefinitely. I have much more to write. I’m going to stay active in raising awareness for Lewy, and maybe we’ll get over this COVID issue so we can continue our Mike Madness basketball tournament, which raised over $30,000 in its three years before than COVID shuts it down. And my music? What to do with all these albums. I’m still working on that. Oh yeah, and before I go, I remember a song from Blood Sweat and Tears:

When I die and when I’m gone / There will be a child born into this world to carry on, to carry on

I just found out, I will be a grandfather for the first time in May.

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

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

Mike Oliver is a former journalist and executive producer of AL.com and The Birmingham News.

You are invited to browse their 678 reviews plus about 100 other posts on a variety of topics. The countdown messages are listed alphabetically, from African musician King Sunny Ade to ZZ Top. The collection, rich in the pre-CD era of the 60s, 70s and late 80s, covers a range of musicians, bands and genres from Led Zeppelin to Carole King, George Strait to REM, Sting to the Scorpions. And let’s not forget the Kinks, Miles Davis, Willie Nelson and Otis Redding.

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