Note: This published Monday Jan. 6 on AL.com. Here’s the top of the story and a link to the full length version:
This is an opinion column by Mike Oliver who writes about living with Lewy body dementia.
Come on in.
Welcome.
Welcome to my brain.
The brain is the big boss. This is where it begins — and possibly ends.
I have a brain. (Thank God I was in the right line for that).
But I am not my brain.
Sure, my brain is the Bill Gates of my operation on Earth. But Gates has many thousands who make up Microsoft. Of course it’s all directed and put in play by Gates. When my stomach hurts my brain tells me. But my stomach almost simultaneously mobilizes the forces to find whatever distresses it and help with a fix. The brain keeps the light on while the body parts do their job.
The brain is me but not me only. It’s the conductor of a million symphonies as my body comes together in symbiotic synchronicity. Harmony.
But not always, and certainly not forever. My brain is broken now.
It’s leaking Lewy bodies.
And depending on the source, one lives an average of 4 to 9 years after diagnosis. I was diagnosed, first with Parkinson’s and later Lewy body dementia in 2016. In an internal battle, proteins are killing my brain cells by the 10′s of millions. Near the end, autonomic will not be automatic.
So, welcome to my brain. Let’s have a little fun. (That’s my new motto).
Mike Oliver is an opinion columnist who is using music and his writings to raise awareness to Lewy body dementia on his blog myvinylcountdown.com and AL.com.
As you all may have figured out, I enjoy music. (Understatement).
I believe it is therapeutic for anyone, not just those like myself who have a degenerative brain disease.
Now, news out of Switzerland on the effects of music on premature babies adds more substance to my, admittedly anecdotal reports of music’s healing properties
“Among very premature babies, some of whom were almost born four months ahead of schedule, those who were given daily doses of music written just for them had brain functions that appeared to be developing better than those who weren’t exposed to the music, ” according to ScienceAlert.com., citing several studies.
Yes! I knew I was on to something. Tiny babies rocking out, shaking their booties, doing the funky chicken are helping their brains.
Well not so fast.
Turns out they weren’t exactly rocking out.
The music (which the babies had no say in choosing) is basically elevator music.
The preemies received “eight minutes of soothing background musi c (Click to hear it), bells, harp, and the Indian snake charmer’s flute five times a week.
Incidentally, the snake charmer’s flute was the most soothing sound to newborns,” ScienceAlert.com reported.
Bells, flute, snake charmer’s flute? Are they trying to teach them to slither out of the crib?
I have a friend, Jill in California, who suffers great physical and mental pain upon hearing the harp.
Did the researchers consider any Iron Maiden or old school Black Sabbath. I find a little ‘Crazy Train’ gets my blood pumping in the morning. That’s the goal here, right? Get the healing power of blood circulation in the brain.
If the experts believe that hard rock may be too much at this age, or encourage head-banging, maybe they can start them off with a power ballad by the Scorpions. Or going to another genre, how about the soothing tones of Barry White? Or Smokey Robinson and the Miracles? Or the Rev. Al Green?
I listened to some of the music they used on these little ones and, frankly, it sounds like what we called New Age music. You know , Kitaro. There were no lyrics. I say get them started on words. Old school hip hop like Run DMC or Kurtis Blow.
May want to avoid the Police doing (De do do do de da da da). That, and Janis Joplin singing ‘Cry Baby.’
I think the babies would enjoy the whole catalog of the ‘The Mamas and Papas.’
While this is fun, I’d like to take serious note that the best way to solve this problem is to reduce the number of premature babies. Unfortunately many women lack access to good neonatal health care, and sex education. AL.com’s Anna Claire Vollers is spending the year investigating these and other serious issues facing moms in Alabama .
Sciencealert.com says the music was aimed at different parts of the babies’ day, such as feeding time or waking: “Headphones were placed on all babies during the trial when they were waking or noticed to be awake.”
I can see it, Lil’ Man, Lil’ Woman with the head phones on, maybe some shades, chillin’ to Bob Marley.
“We jammin’ we jammin,’ babies nodding their heads in unison, “we hope you like jammin’ too.”
Acceptance of a fatal disease diagnosis is the first step.
Listen up brain. I’m talking to you.
That doesn’t mean you are not angry
about it. That doesn’t mean you are not sad about it. And that doesn’t mean accepting
everything the doctor says. Do research.. Ask questions. I’m not saying give up
hope – for a cure, for a milder case, for, yes, even a miracle.
But be realistic.
To avoid despair – and that’s a weighty word
for giving up – you need to come clean with yourself primarily, and, then,
others as you begin to become comfortable talking about it.
I knew a person with a fatal cancer diagnosis who refused to talk about her cancer. Her friends and children eventually knew she was sick but had little to no time to prepare for her death. When she died her school-age children did not know death was even a possibility. Her death was a hard blow to handle without preparation, a sucker punch with long lasting effects.
Talking about my fatal disease, even
joking
about it has been my way of making this horrible thing bearable. I also
talk to my brain.
Now this might sound silly but try it: Stand in front of a mirror and say “I know I have Lewy body dementia (or Alzheimer’s, or Parkinson’s, or cancer, or whatever it is).
“I know you may kill me before I
want to die,” I say to my reflection, talking to my brain. “But I will fight
you. I will not go gently — until I can do that on my terms.”
Still standing before the mirror I say: “Lewy, I will resist your memory damaging brain attack. I hereby give you, my brain, permission to summon whatever resources you have to fight back to slow the proteins down.
“Step up brain. You are me. I am you. Together we can beat this.”
I received an email from a reader that
illustrates some of what I am talking. I am printing the email here in whole.
Anne Pinkston in Nashville brought a
tear to my eyes with this email.
I am guessing
you receive more emails than you can read, but still I felt compelled to write.
I am Anne
Pinkston in Nashville.
My husband Ken,
age 76, too has been diagnosed with Lewy Body Dementia with Parkinsonism. Several months ago, a friend in Birmingham
told me about your articles, through which you are chronicling your
journey. That night, I sat up for hours
because I could not stop reading your articles.
At that time,
Ken knew very little about his “diagnosis” and had not been ready to embrace
the diagnosis. I began to read your
articles to him at breakfast. That is
how I have exposed him to everything “Lewy”.
Now, he can sometimes even make jokes.
Your articles
have been a great inspiration for me. I
love your sense of humor and your determination to not be defeated. I relate to your wife, Catherine.
Tonight,
I read your article about driving.
My husband had to give up driving in September, and should have
sooner. He has not adjusted yet. I will read your article to him in the
morning, with the hope that it will help him and will make him smile.
I believe you
and my hubby will both “beat the odds” and live longer and better than
expectancy for Lewy Body, so don’t give up.
Thank you so
much for your articles, your humor and your amazing outlook on life. You, Catherine, and your girls are to be
admired. I am guessing you have
inspired many, many people, as you have inspired me.
So your friends
pledge $$$’s if you dunk. Well, I pledge
$500 to your July Mike Madness B-ball Tournament, whether you dunk or not. But, I think you and Dr. J’ Erving could both do it! Is there a link for 2019 Mike Madness
pledges.
I have been
including you and your family in my prayers.
Keep that
“vinyl countdown” going!
Anne Pinkston
Thanks Anne for making my day!
– Mike
Post Script: Keep your eye on myvinylcountdown.com for information about the charity basketball tournament. We are in early planning stages right now. But I have a feeling this year’s Mike’s Madness is going to be a doozy.
Below are some links and excerpts from stories I wrote about my new status at AL.com
It’s all good. Really good.
Bottom line: I’m now going to be writing full time as a columnist. Here’s part of what I wrote and published on AL.com Friday.
A little over a year ago I wrote a column that pulled out the tried and true trope: I have some good news and bad news.
My ‘good’ news was that despite what I had previously announced in a column, I did not have Parkinson’s disease after all. I did not have that dreadful brain degenerating disease that left Muhammed “The Louisville Lip” Ali speechless, and makes Michael J. Fox shake and tremble like he has just been pulled out of an ice fishing hole.
I didn’t have it. But I had something else.
There was that word ‘but.’
Oliver listening to and writing about one of his 678 vinyl records stored on bottom shelf. Despite a degenerative brain disease, he vows to review them all. (Mike Oliver).
My wife, Catherine, scolds me when I use the word ‘but’ after a declarative clause. “When you say ‘but,'”she says, “You are negating everything you said in the first part of the sentence.”
But, but, but … I argue. (I always argue semantics).
But it’s true in this case. Not having Parkinson’s was NOT good news. I was misdiagnosed (not uncommon). I didn’t have Parkinson’s; I had Lewy Body dementia, which in general leaves its patients with a shortened lifespan. The average lifespan after diagnosis is five to seven years, usually much shorter than the lifespan expected after an Alzheimer’s or Parkinson’s diagnosis.
I was diagnosed about 18 months ago at age 56. So, I have a little time, I think.
Today I wrote more specifically (to theAl.com audience ) about my countdown and record review:.
So I’ve told you earlier I was going to be doing more writings on AL.com, and some of it will relate to the countdown of my vinyl records.
I have vowed in my blog that I will count down my collection of 678 vinyl records before I succumb to a degenerative brain disease called Lewy Body dementia.
I’m 58 now and it appears I have enough records to last me about two years, although I am feeling deadline pressure.
I went to work today really feeling it. Nope not in a good way. I was stiff and sore, not unlike most mornings, and not unlike many people in their late 50s.
But I was extra sore.
And I had some other problems that I won’t go into detail about. Let’s just say gastrointestinal, which is what people say when they don’t want to go into detail about it.
As I talk to more and more people, they seem sincere in their inquiries about what I feel like, um, maybe not so much the GI stuff. You may remember, I did a whole post about saying I was fine.
Well, i’m still fine, the good fine, and sometimes the bad fine — Feeling Insecure Nervous and Emotional.
Today was, I have to say, the acronym FINE.
So, I’m taking some time to do some pondering. Hope you will ponder with me.
The big question I sense people having but may be too polite to ask: What’s going on inside my head? After all I have an oversupply of proteins in my head, is killing my neurons (my mind). What’s going on in my head from the perception of someone’s whose head it is happening to.
I spent a lot of time on the road in 2011 talking to victims of one of the most explosive tornado outbreaks of all time. I spent nearly a year covering everything from search and rescue to funding issues to FEMA, most importantly stories of the people.
An aside: If you want to sit down for a nice spell and read about the April 27 event, here’s something I wrote on the first anniversary. If you get to the bottom of that one and want more, click the link to Part 2.
I wrote a lot after talking to people in Hackleburg, Pleasant Grove, Joppa, Pratt City, Smithfield Estates, Rainsville, and many other small and larger communities. There was something like 340-plus killed across several states, with the most (more than 240) in Alabama.
In my interviews that question was always in my mind: ‘What’s going on inside your head?’ How are you going to cope with the total annihilation of everything you own, or the loss of loved ones?”
I’m not sure I was that direct in asking the questions but I believe I found the answers: in the sound of bulldozers, funeral processions, hammer on wood. and chainsaws. The rescue personnel, again from here and out of state.
That was the answer. But as those, who follow my blog know, I keep looking for bigger, different answers as well. What is our purpose? Why is there such suffering in the world?
Is it like what T Bone Burnett sings in the song, ‘Trap Door?’
You’ve got to suffer to know compassion You can’t want nothing if you want satisfaction
What’s going on inside your head Mike?
Today wasn’t the best day as noted earlier. My brain function feels sluggish. My head is buzzing a bit, which it is prone to do. My memory is fair. I’m shuffling when I walk. My basketball game? Not good at all.
It’s happened before and it will pass.
As long as I am chronicling this. I often get what feels like a low-tiered burning sensation on the right side surface of my ever-growing belly. I’ve kind of written it off as my skin reacting–stretching — to accommodate my new size. (Which, I am working to get off — about 20 lbs.)
I had fallen to one basketball game a week and am now back at 2 a week. Progress. My diet needs to get better. I have so many tips on diets, it’s like I blend them together and pretty soon I’m eating more, not less. (Thanks for the lemon meringue pastry Chez Fon Fon, dessert after eating what appeared to be a half-pound burger). So good. So not so good for me right now. (Of course, my internal argument spurred on by my remaining neurons is this: ‘You want some meringue pastry lavished with whipped cream, you should get it.’ I am quite susceptible to that argument.
Fear of leaving my grown-up children, Hannnah, Emily and Claire, my super supportive wife, Catherine, my siblings Julie and David, my parents, friends. Gus my dog. Nieces nephews. Inlaws, outlaws. The Earth!
There is fear, fear of losing.
Tornado victims can lose it all in a moment. Lewy body dementia takes it all away bit by bit.
At least I have the bits. And pieces. I am thankful for that.
I’m looking outside as I wrap this up. It’s still clear and pleasant outside. No sign of bad weather here in Birmingham. Good weather for now to be under it.
