How I am combating a fatal brain disorder with vinyl records

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

Do these two items correlate?

Not definitely, but likely.

5 several years back, just after receiving the diagnosis of Lewy physique dementia, an incurable degenerative condition that has identical qualities to Alzheimer’s and Parkinson’s, I vowed to assessment my 678 vinyl documents in a blog site in advance of I died.

With my submit currently of ‘Tres Hombres’ by ZZ Major, I have fulfilled my vow. The blog site is

3 techniques the web site served me slow my development down:

1. Hand-eye coordination. Finger acuity. Working with my fingers day-to-day to kind assists my memory, locating the suitable keys and spelling the text appropriate.

2. Locating new music. Intellectual acuity. Hearing tracks you experienced overlooked about or seldom played. Busting out albums even now in the shrink wrap. All over again a memory obstacle as the earlier will come speeding in. Locating some hidden gems well worth $$$. Listen to Sonny Rollins and Thelonious Monk.

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

Pondering back again to the working day I commenced this site (Sept., 16, 2017), I can say I truly in no way thought I’d make it. I puzzled about starting off an workplace pool as an alternative — but that would be just mistaken.

This is extra than an assessment and accounting of my documents. This is about using blogging or any pastime as psychological training and submitting publicly to bring recognition to this tiny regarded, but not unusual, condition.

At the time I manufactured this pledge I didn’t know how long I experienced ahead of dying — and even now don’t.

The quantities on common lifespan soon after prognosis are diverse based on which resource is utilized, but I was doing the job off of 4 to 8 years. The Lewy Physique Dementia Affiliation rightfully details out that each individual person’s expertise is diverse and some die 2 years following prognosis and many others continue to keep on keeping on for 2 many years.

So I’m at 4 decades a few months with the site and about 5 years with my diagnosis. I’m grateful for just about every new working day.

I’ve been by means of some rough moments when hallucinations eaten me. There was a interval of time, weeks, months in 2020 when I couldn’t put up nearly anything, and I did not assume I would crawl out of it.

It seemed as if I was residing in an additional dimension or universe.

In my hallucinations, my house was not my home. Dependent on the working day, it was a counseling centre or physical remedy operation wherever amputees would function out. Then at evening it would turn into a exploration facility in which I was the subject matter of their scientific studies in a space with glass walls for observation and sometimes it was a nightclub.

I was chatting to invisible men and women telepathically. (Wow! I in no way in a million decades assumed I’d create that sentence.)

I received to know the other folks, or beings, and would have interaction them in these telepathic discussions. One particular time I questioned Tom, — my son-in-legislation, — who is British but not an alien, I can assure you — to crystal clear out what I assumed was a celebration going on in the basement.

I went down and started chatting to a remaining whom I could see ideal by way of. I asked who he was, the place he was from and who all the other individuals are.

He claimed they, like him, were being tourists manufactured up of structured power from the universe he explained one thing about radio waves and digital fact. It produced overall feeling when he informed me. Now I can’t recall what seemed so serious, and what I do recall, I really don’t realize. But the typical thought was that by virtual fact machines, individuals could leave their body at property and journey the universe. (Was not this the plot of the Matrix?)

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

That’s just a couple of the hallucinations that manufactured up my times, whole immersion hallucinations I call them. I’d also get significantly less sophisticated hallucinations this kind of as a mouse operating throughout the floor, or looking at people’s faces in tree trunks. At the time I observed what I believed ended up folks breaking into my automobile, I ran out, very little there. But then I appeared up and observed them laughing from throughout the avenue. It was a hallucination.

I started to master, or consider independently when hallucinating, which helped me manage them in holding my sanity, I would notify Red John, my nemesis in a great deal of this, that he is almost nothing, that he was not serious. It would drive him outrageous.

On the clinical facet of factors I started making use of a new sort of treatment referred to as pimavancerin, or its industrial title NuPlazid. For me, it was nothing at all small of a miracle drug.

But that is only a person aspect of slowing down these rogue proteins that are attacking my brain.

When the hallucinations stopped I could far better figure this out, continue to exercising and consume sesame seeds (supposedly very good for brain well being).

I give a significant component of my achievements at retaining the demons at bay with the blog. I can not inform you how several instances I have had to combat myself just typing these terms. The Parkinsonian indicators of the disorder make it experience like there are concealed power fields. Acquiring out of bed getting quickly caught in the pressure industry and just can’t shift until finally I bring my brain back again all around so its focusing on the undertaking.

Lewy entire body dementia, like Alzheimer’s and Parkinson’s with Dementia, will involve the destruction of brain cells by a in a natural way transpiring protein. The protein, known as, alpha-synuclein, will get into areas of the brain it doesn’t belong, leaving trails of dying brain cells.

But you have, by some accounts 100 billion mind cells, and many aren’t being utilized, brain scientists say. I’m working by just considering about it. I consider turning those people brain cells into replacements or helpers to the kinds I have still left. Researchers suspect that is what occurred in the renowned Nun’s Review exactly where they found extensive evidence of Alzheimer’s ailment in several nuns, together with Sister Mary, who confirmed no seen signs and symptoms even though alive. But Sister Mary’s brain was marked by lesions, a sign of Alzheimer’s significant plenty of that it ought to have impacted her cognition. Nonetheless Sister Mary ongoing her extensive looking at, every day walks, knitting. She lived to be 100.

That’s what I want to do. (No not turn into a nun, but stay to 100).

The signs or symptoms of these disorders can be related, producing prognosis much more tricky. But in standard, if your first and early indications include things like tremors, foot shuffling but no sizeable cognitive decline, you probable would obtain a Parkinson’s analysis if you are owning hallucinations, night time terrors, and sizeable memory reduction you would most likely get a Lewy system analysis. A different protein altogether is involved with Alzheimer’s ailment, which also destroys the brain. I was first diagnosed with Parkinson’s just before I bought a Lewy human body diagnosis.

What’s Following?

I’m heading to retain the weblog up indefinitely. I have a whole lot a lot more to generate about. I’m likely to keep lively increasing recognition for Lewy, and possibly we’ll get previous this COVID detail so we can proceed our Mike Insanity basketball event, which lifted extra than $30,000 in its 3-12 months tenure right before COVID shut it down. And my audio? What to do with all these albums. I’m nevertheless doing work on that. Oh certainly, and in advance of I go I am reminded of a Blood Sweat and Tears tune:

When I die and when I’m absent/ there’ll be one particular youngster born in this entire world to have on, to carry on

I just uncovered out, I’ll be a initially-time grandfather in May.

My daughter, Hannah, and her partner, Tom, are expecting a newborn boy.

How’s that for a cause to hold on keeping on.

Mike Oliver is a previous reporter and managing producer with and The Birmingham Information.

You are invited to peruse his 678 assessments additionally about 100 other posts on a assortment of subjects. The countdown posts are somewhat organized alphabetically from African musician, King Sunny Ade, to ZZ Prime. The collection, heavy on the pre-CDs-era of the 60s, 70s, and late 80s addresses a vary of musicians and bands and genres from Led Zeppelin to Carole King, from George Strait to R.E.M. from Sting to the Scorpions. And let’s not neglect the Kinks, Miles Davis, Willie Nelson and Otis Redding.