NOTE: This is an account of a particularly difficult time in my battle against Lewy body dementia when I lived for months hallucinating around the clock. Much of this occurred May, 2020 through November 2020 ending in December . I will tell you more about escaping the clutches of my hallucinations but first I’m going to describe one of my hallucinations, a serial hallucination involving a lot of the same people or beings. Addendum, June 23, 2021: See this for updated information.
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I didn’t really know where we were sleeping, my wife, Catherine, and I.
It was like a laboratory with lots of stainless steel and glass walls so we could be observed. I hated going to bed every night because I knew that was when the attacks would come.
In this ‘place’ which was actually my home, I felt like I was being studied, to see how well I performed under pressure as a Lewy body patient.
There were Beauty and the Beast style anamorphic scenes where lamps would talk to stuffed animals, where bed time was dreaded because I knew I’d be attacked by my ongoing nemesis Red John – a name I gave him because of his hair color. I also realized, after I had named him, that it was the same name of a fictional serial killer in the TV drama ‘The Mentalist.’
My Red John had no legs and could swim like a dolphin.
Oddly as this hallucination unfurls, he said he loved me and practically sexually assaulted me in our first encounter. I was so flummoxed by his maneuvering and my confusion as to where I was — I told people, family and friends, about Red John but was told he didn’t exist — that he was a hallucination. Nevertheless, I took to wearing several pairs of underwear in addition to athletic pants with the drawstring tied tight.
Red John put big eel-like creatures under the sheets at the foot of the bed and they’d slide up toward me — I could see them moving under the bed covers. I knew somehow that one, or all of them, was Red John.
I built blockades with towels and pillows. My wife sleeping next to me seemed oblivious until I’d jump up and pull all the covers off the bed. Sometimes there’d be a platter of raw fish in a part of the sheet. That was freaky but my wife showed me how to make it disappear if you shook the sheets. She never saw the fish so I was amazed at her knowledge of the world I was living in. She’d shake the sheets and I’d watch them disappear in mid-air.
“There, all gone she’d say,” And I’d go back to sleep until I’d look over and see some ghostly white old man with hawk like features and talons for hands appearing to be trying to molest my wife. ‘I’d rip the covers off again to the increasing dismay of my wife, now agitated from the sleeping interruptions. This continued for days. Maybe months.
During that time my wife said she sometimes feared I was trying to assault her, after all she never saw Red John or the other people I saw.
I was furious every night at Red John who I know was watching with a group of younger (teen-aged) kids who seemed to idolize him. And then there were people in lab coats with their pens and notebooks. And cameras, both hidden and not hidden, were aimed at me.
My anger was beginning to override my fear.
One night when Red John came rolling around, I leaped out of bed and hit him two times in the face, stuffed him in a burlap bag, from I don’t know where, and started swinging him around over my head singing the theme song to the Beverly Hillbilly’s television show. My strategy was to act like a lunatic to keep them off guard, and I was succeeding.
I told Red John they wouldn’t put me in the other hospital because I was just a little too ‘nuts’ for them. I said it in my crazy voice. Loud. Remember I’m still swinging Red John around in a bag telling him I was going to throw him down the stairs.
I didn’t. Throw him down the stairs, that is.
But his attitude toward me thereafter was one of wary respect.
My middle daughter Emily was in the bedroom next door (somehow this all morphed back to my house) and she came out and saw me swinging around a pillow and yelling at it. I let out a string of profanities and let the world know that I wasn’t going to take any more abuse. Emily said she never saw Red John just me, screaming with the pillows and sheets.
I never really knew where I was.
At one point in my hallucinations I was positive it was a rehab center for people who had lost limbs and by night it was a sort-of pick-up bar for these amputees.
My other working theory that it was a university research team investigating how Lewy body patients react to stress. But I couldn’t understand how they did the special effects — the disappearing and the telepathy and animated furniture. They have some of the best special effects this side of Hollywood, I told my brother.
I asked Red John, who looked a little like Sean Penn: ‘Where are you from, or where is this place? The 7th dimension or another universe or what?
He smiled, I think, and began whispering as these beings did. But sometimes they would yell talk. It seemed extremely fast – this talking, kind of like saying the word ‘onomatopoeia’ over and over again as fast as you can. As they did, their bodies would vibrate, sometimes disappearing altogether.
They can see each other and they could see me. I could see them which kind of freaked them out.
As soon as they looked at me they’d lock eyes and I knew they knew I could see them. I used this as an advantage. They seemed to tolerate the human who could actually see them. I took this to mean they were usually the unseen.
My goal was to get out and back to this normal life I once had. I was beginning to grow stronger and less stressed living in the hallucinated state. I got better at knowing I was in a hallucination. I learned to avoid eye contact lest I get pulled down a rabbit hole, or the lair of a creature scarier than a rabbit.
Scientists tell us these hallucinations come from our brains — that brain uses its memories to create this other world. I learned if I told them they did not exist many would disappear — poof. (Red John was resistant to this kind of tactic.
So they may not be real in a traditional measurement detection but I say if you have a full immersion hallucination like I did, it will shake your science beliefs to the core.
You can say hallucinations are not real but they changed my life, forever.
NO MORE RECORD SKIPPING
By all rights I should be dead by now. I feel. But like the reporter I was trained to be, I went in, walked up to the edge of what seemed to be the biggest story of my life. And I came back with notes.
I was diagnosed with Lewy body dementia in 2016, after having been earlier that year diagnosed with Parkinson’s. For Lewy body, death on average comes about 4 –8 years after diagnosis. But some of us live 10 or more years longer.
Thousands have followed my record countdown (myvinylcountdown.com) until it went silent last July. It’s back up and running, I’m happy to report.
Some wondered if I had reneged on my promise of finishing all 678 reviews before I die. I haven’t and I won’t. I have renewed life. I have 188 reviews to go.
The big question is: How did I break free from this disorienting, dark – but interesting world?
The big answer is: A new medication and a reorganization of my medications.
The new med is called pimavanserin, or its commercial name, Nuplazid. I am in a project in which I receive doses, free of charge, for one year. I am a happy Guinea pig. It has given my real life back again.
Now anti-psychotic drugs are a powerful and sometimes dangerous tool. Nuplazid has been approved for Parkinson’s psychosis but not ‘dementia-related psychosis.’ So what about Lewy body?
My take is that Parkinson’s psychosis and Lewy body dementia are basically the same thing.
My doctor, Dr. Kasia Rothenberg, MD, PhD, at the esteemed Cleveland Clinic, found out about this study and had to fight the drug overseers, to get it prescribed to me because I had this Lewy diagnosis.
Lewy and Parkinson’s have the same oversupply of the protein alpha-synuclein killing the brain cells. In Parkinson’s the proteins are concentrated in one place whereas Lewy body, the proteins accumulate and kill brain cells in different regions, according to my understanding of the diseases. In the end in some cases Parkinson’s hits the brain in a way that Lewy does — causing hallucinations.
Yet the box says for use with Parkinson’s psychosis only in big bold letters. Dr. Rothenberg, like all good doctors, saw an opportunity to switch things up for the good health of the patient. It has worked.
But remember always, always, consult your doctor or multiple doctors when faced with an illness, especially one as serious and misunderstood as Lewy body dementia. We have seen a total of six doctors, all of them helping push us on the right path. It’s a journey.
I’ve spent the last five years or more trying to get more attention from drugmakers, doctors, and ordinary people who need to know more. As this shows, Lewy body dementia is left out of the conversation.
One of these days, I hope Lewy will receive some attention and publicity about how it is different but very much like Parkinson’s.
Do I worry these major hallucinations will come back. Of course. I still see what I call remnants of the old hallucinations: Red John winking at me. Faces in windows. And drop-in visits by a character from one of my many hallucinations. I usually smile and say, ‘How is it going?’
END NOTE: It should be emphasized here that I wasn’t asked to write this by the drug company or anyone else. Other than free doses as part of the study group, I received no compensation.