My life with Lewy, from the inside out

Those of you following my journey on www. myvinylcountdown.com have learned more than needed or ever wanted about 1970s -80s rock music and a relatively anonymous disease that kills you.

Amid the obscure and the famous, amid the 7 stages of Lewy body, amid the stories of basketball and the Beatles, I wanted to write more about where I am today, now.

Whew! That makes me breathe deeply just typing it.

This has been a hard column to write.

[See AL.com version here]

I started it as a journalism story. So, by God, as a relatively healthy 50-something, I was going to research Lewy body and fight it. I learned some key facts: On average you have 4 to 8 years of living after diagnosis. Lot of variables in that calculation so i use it as a guideline –nothing to make plans around. I learned that even though Lewy affected 1.4 million people in the United States, no one much knew about it, even doctors.

I was diagnosed with Parkinson’s in July 2016 and then with Lewy in November of that year. It’s anonymity I think is fair to say hinders a proportionate amount of federal dollars to research it.

I learned that it seems the same kind of protein messing up brains of Lewy body patients were the same messing up those with Parkinson’s DIsease. Symptoms overlapped. Alzheimer’s, on the other hand, plagues the brian with a different kind of plaque. Alzheimer’s does however have some similar symptoms: memory and cognition failure. And evidence of AZ is often found in patients with LPD.

I will say, though I’ve read and heard anecdotally that LBD doesn’t usually have the ‘whiteout’ tendency of Azheimer’s regarding memory. LBD come with days that seem normal only to go dark again. Again my observations and readings suggest LBD patients can be a bit more argumentative and aggressive than Alzheimer’s. Some memory care centers won’t take Lewy patients because of these issues.

There is some good work in the trenches out there. UAB is doing some of it. But the research of Lewy body dementia nationwide is in its infancy, I believe.

I didn’t want a write a big old dissertation about that.

I also hope it doesn’t sound like I’m on my last lap. This is not meant to be a bye-bye column .

It’s not a column about naming names, pondering the future of journalism, or Mike’s best of music reviews and Lewy posts.

I don’t want to die anytime soon, but we know not the hour. And I do want to keep telling you what I know. Something is happening, for sure with me. From the inside out.

The difference between now and, say, two years ago, is an accumulation of small things, subtle things. Remembering where I set something down sets me off on a 20-minute search. Trying to remember which button or combination of buttons to push leaves me staring at my computer — or the wall — for a zombie moment. A momentary loss of balance. Or, falling.

Standing up quickly can lead to dizziness, shakiness and losing consciousness. I feel down the stairs the other day after passing out. Luckily it was a four or five stair roll leaving me with a relatively moderate gash on my knee.

The condition is caused by low blood pressure. When we sit, our blood pools to the butt and thighs. Normally when we stand up that blood pressure has beat us to the brain and is lathering it in blood for oxygen.

It’s the real deal. Because falling is one of the biggest LBD -related cause of deaths. Choking is another, as your autonomic system is under attack.

Your autonomic system is like a perpetual cruise control allowing you to breathe, pump blood, even salivate ‘automatically.’

I’ve written a lot of columns and spoken to a lot of groups about Living with Lewy.

The reaction I get is many have never heard of the disease, which attacks the brain bit by bit. Like an appetizer for Hannibal Lector.

Most haven’ heard of it. This despite it being the second largest type of progressive dementia after Alzheimer’s Disease.

My pain is classic angst. Will my (children) be OK? How will my truly beloved wife be able to live without me? Will she know what the ebay password is?

I ‘m now having doubts about finishing this project –myvinylcountdown.com. Four years and I still have more than a hundred album reviews yet to finish it.

I realize how dumb and strange this blog must look sometimes writing a post about Stephen Hawking’s view of the afterlife followed by a review of Bobby Sherman singing Julie Julie Julie do ya love me.

But there has been signficant change. It was actually likely a series of micro changes as a couple billion brain cells do battle with unwanted alpha-synuclein proteins.

Spoiler alert: The proteins win.

But as I said. Changes accumulated. My memory worsened, although thank God I’m still, for the most part remembering most of those with a role in my life.

I had some episodes where I’d break from reality. Nothing serious (sometimes reality is overrated). I usually could locate the logical rational piece of my brain and somehow steer it back to clear water. I developed a healthy case of Orthostatic hypotension, a form of low blood pressure.

I’ve learned tostand very closely and wait for a wave dizziness or near unconsciousness. blow by.

See, I was going to give many tips like this. But the brain cells that held them got eaten. By bye list.

So back to the bigger noticeable change. Different patients have different experiences. Our endings will be different. I pray for a peaceful death for those with the disease. For me? I’m bargaining for time. I’m bargaining for time so I may be with family members and friends longer. I’ve been rewinding my life for the past few years, remembering wild and crazy times with wild and crazy people and laughter and the roar of the ocean and sitting around campfires. And being scared sometimes; and worrying too much; and hurting people. I said I’m not going to make this a regrets column.

We’ve been beating ourselves up for those for too long anyway.

Couple of years ago I wrote a column called “Rub your dog between the ears while you still can.”

Gus, the family’s 14-year-old mixed poodle, is sitting right here as I write.

I’m rubbing his ears. And rubbing my eyes.

Oliver is a columnist from AL.com who writes often about Lewy body dementia. He also loves vinyl records and uses his blog to list them and write about them. He has finished more than 500 platters (haven’t used that word for records in a while.) He is racing against time to finish those before he dies. Stay tuned.