I could listen to Sam Cooke sing anything. A telephone book? What’s that?
The menu at Olive Garden, maybe.
Lost too soon, Cooke was a soul singer who’s voice was smooth with a side of gravel. He could swing as evidenced by this wonderful 1963 music from the Harlem Club, re-discovered and released in 1985.
You want to ‘Twist the Night Away’, then take your handkerchief a round. Round and round. Now your dancing with the chicken slacks, er, the chick in slacks.
What if your baby been stepping out at least that’s what people say.
Sam says don’t get all violent about it, go home and tell her:
Honey it’s all right
Long as I know, long as I know that you love me
Honey, it’s all right
(And as long as she tells you it’s not true, he sings a little later).
But then again ‘You Send Me.’
Cooke’s biggest hit. He milks it at the Harlem: “I just want you to listen to this song right here.”
At first I thought it was infatuation But, woo, it’s lasted so long Now I find myself wanting To marry you and take you home, whoa
You, you, you, you send me I know you send me I know you send me Honest you do
Cooke could work a crowd. They burst out in singalong choruses nearly every song. Wish I was there.
Sam earned his chops on the gospel music scene with some magnificent God praising in a group called Sam Cooke and the Soul Stirrers, which, if you’re into that kind of music, is some top of the line gospel.
Less than a year after this live show, Cooke was shot and killed in Los Angeles. Police ruled it a justifiable homicide, something the family has long disputed, according to a book by Fred Bronson called The Billboard Book of Number 1 Hits: The Inside Story Behind Every Number.
This one was tough not to give a 5.0.
Counting my 678 vinyl records down before I die of brain disease.
Porter with dad Michael at 12-month old birthday party. (Mike Oliver).
I started writing about Porter Heatherly long before I was diagnosed with my own brain disease. The first story was published Oct. 31, 2013. It was based on my visit to the Heatherlys in Opelika on Porter’s 1 year birthday.
Here’s how that story started:
Like a big boy, Porter Heatherly sat back in the infant seat like it was a throne, holding up his arm from time to time and smiling as if to acknowledge his subjects.
Two dozen people, many relatives, stood around the blond boy in the bib and sang Happy Birthday.
Cameras and camera phones snapped and flashed.
A few brushed away tears.
Porter was 1-year-old on this day, Sept. 14, 2013.
I continue.
Sara Richter and Michael Heatherly were high school sweethearts in Cullman, where they both grew up. Both went to Auburn University, got married, got jobs and settled in neighboring Opelika.
Unbeknownst to them, both were carriers of a rare genetic disorder.
-=-=-=-=-=-=-=-=-==
I learned a lot that birthday visit in Opelika. It would not be my last Porter birthday visit. I met family and friends. I found out about the disease.
A Heatherlys Christmas with Porter.
Porter had a rare incurable genetic condition called gangliosidosis type 1 or GM1.
I later called the UAB specialist who diagnosed Porter.
“There is no cure,” the doctor said. “It’s an inherited disorder and progressively destroys the nerve cells in the brain and spinal cord.”
She said life expectancy is about 2 years.
I also learned that this 1 year birthday wasn’t really his first birthday celebration. The parents had decided to celebrate Porter’s birthday once a month. So, in their eyes, it was Porter’s 12th birthday, going by months.
I had some quiet time on the drive back to Birmingham and the more I thought about it, the more I loved the Heatherlys’ idea of monthly birthdays.
By doing that, the parents were choosing to stretch time making the most of the time remaining. They may not have had more time, but they sure as heck could create more moments.
Told that Porter’s life expectancy would be 2 years, they chose to have more than 20 birthday celebrations instead of just 2.
The Heatherlys ended up having many more than 20 birthdays with Porter but let’s not get ahead of ourselves here.
I was so impressed with their decision that I asked Michael and Sara if they would help me put together a post for AL.com on each monthly birthday, the 14th that would give an update on Porter’s condition, activities and such. They bravely said yes. They bravely agreed to, in this time of grief and hardship, open up their lives for the sake of helping people and research.
The monthly posts, which were usually in Sara’s own words but sometimes in Michael’s, were successful, chronicling medical triumphs and set-backs, good days and bad days, Auburn football games attended, fishing exploits and other activities. But they couldn’t help but reveal that the nature of Porter’s illness meant that he was slowly getting worse.
Porter was regressing as he passed his 24-month birthday which was his average expected life expectancy. He continued through and past his 3rd year. All the while, he was helping raise awareness and money for research.
The irony as you can read in my earlier stories is that Auburn University was a world leader in this kind of research, a fact the Heatherlys accidentally discovered at church when they ran into a researcher there.
(A side personal note: The Auburn United Methodist Church is the same one I attended as a child when we lived for a short time in Auburn during the 1960s. And to continue with these so-called coincidences, the research was being conducted through the Scott-Richey Foundation, a research funding entity created by Dr. Frank Hoerlein, who was a friend, teacher and colleague of my father, John E. Oliver.)
Sadly, although there had been some great breakthroughs, a medicine to stop the disease’s growth or prevent the disease was not yet developed.
With GM1, Porter’s body lacks enough of an enzyme to break down GM1 ganglioside, a substance important for normal brain cell function.
The parents understood the reality of what would happen.
Porter’s smiling face, captured in memories and photographs at his 12-month birthday had, as he faced his 4th year, faded to a mostly blank stare.
Moving forward to present day, I struggle to type now because of some symptoms I’m having at night affecting my right hand and arm. If you are on this blog you likely know my story. If not check out the About Me button at the top of the page. Or a story I wrote after diagnosis.
I have Lewy body dementia, a degenerative brain disease (talk about irony).
It’s not like Porter’s, which starts at birth. But it is incurable like Porter’s. In other words, realistically, I will not get better only worse.
I have to say, I fear the blank stare.
The average life expectancy after diagnosis is 5 to 7 years.
Or, let me put it another way. My average life expectancy after diagnosis is 60 months to 84 months. Thanks Heatherlys. I’m 58 now, I’ll easily live to be 100 with the Porter method of counting.
I am also vowing to celebrate (however small the celebration) my birthday, Nov. 9, every month on the 9th.
Porter doubled his expected lifespan. Porter died, Nov. 10, 2016, at age 4.
That’s about the time that I got a confirmed diagnosis of Lewy body dementia. I just now noticed that as I wrote these words. (Note to myself: Check the date of my official diagnosis.)
At the time I wrote this for AL.com:
Porter Heatherly, the 4-year-old boy with a rare genetic disease called gangliosidosis type 1 or GM1, died Thursday morning at his home in Opelika surrounded by his parents and a hospice nurse.
“There is some kind of relief to know that the fight is now over for him, to know he is not suffering anymore,” said his mother, Sara Heatherly.
The Heatherlys say that they will continue to work to help Auburn University where researchers are looking for a cure for the inherited disorder. The disease progressively destroys the nerve cells in the brain and spinal cord.
Porter’s father, Michael Heatherly, said between $90,000 and $100,000 has been raised for Auburn research at two fund-raisers to benefit CureGM1 Foundation.
“He’s impacted so many people through helping the research and raising awareness of the disease,” Michael said.
AL.com began following Porter soon after his first year’s birthday with monthly updates labeled Porter’s Precious Birthdays.
Sara once said in one of her updates that it was amazing how much she and Michael could love someone who couldn’t talk.
“Porter never did reach out to touch my face or things like that, but there was a special bond with him,” she said.
What did Porter do? What did his life mean? He couldn’t walk, talk or even roll over. As time went on he didn’t interact at all.
But he inspired thousands. He brought people together in a circle of love. He helped raise money for research which hopefully will help other children in generations ahead. He touched my heart.
Today, Feb. 14, Porter would be celebrating his 53-month birthday.
ALBUM: For the Collector Vol. 2 (4-record Laurie compilation)
MVC Rating: 4.0/$$$$$
What a treasure trove. Here are 64 songs from 50s, 60s and 70s. Many that you know you know. Others you know but didn’t know you knew. Others you wish you didn’t know.
You know? What I mean?
Like right now I’m listening to Jimmy Curtiss sing “Laughing at the Rain.” I know this song but didn’t know I knew it.
This collection has a lot of Dion (8 songs) and a lot of singers that sound like Dion. But that’s OK, I love Dion (and the Belmonts). Most known artists like Del Shannon get two or three spots. But lots of one-hit wonderfuls, like ‘Doctor’ by the Five Discs, ‘Western Movies’ by the Olympics, and ‘The Normal Ones’ by the Brooklyn Boys. I believe it was a bargain special when it came out, but now I see it listed for $50 on eBay and it seems to be scarce.
Then you have the Chiffons singing ‘He’s So Fine,’ AND ‘My Sweet Lord’ – the song they sued and won a landmark decision against former Beatle George Harrison over his song “My Sweet Lord.’ Listening now. Yes, they sound quite alike in melody. He’s so fine. My sweet Lord. I wish he were mine. I really want see you.
Guess the Chiffons wanted to show how alike the two songs are.
You know plagiarism is a bad thing, I agree, but you know how stuff gets in your subconscious. I’ll go ahead and admit it, I am plagiarizing Robert Christgau right now. Except his vocabulary is twice mine. So I’m really only plagiarizing half of his words. But its not the words. Look at ‘He’s so Fine’ and ‘My Sweet Lord’. The words are completely different. Same with Christgau and me. But it’s the melody, the notes, the zeitgeist. I am plagiarizing Christgau’s zeitgeist. And both of our album reviews are in ALPHABETICAL ORDER. Although his is more alphabetical than mine.
OK moving on.
On the last record, the record compilers couldn’t resist bringing in Snoopy v. Red Baron by that great band the Royal Guardsmen. You know the Guardsmen, the RG baby. Never heard of them but I do remember the song, it was my favorite at 4-years-old.
PS I checked real quick Wikipedia on the Guardsmen. Let’s just say they had a hit with the Snoopy Red Baron thing and rode that dog for as long as they could. Here’s what Wiki wrote:
The Royal Guardsmen are an American rock band, best known for their 1966 hit single Snoopy vs. the Red Baron, The Return of The Red Baron”, “Snoopy For President”, and the Christmas follow up “Snoopy’s Christmas.”
I wonder where Vol . 1 is?
Counting down my 678 vinyl records before I die of brain disease.
Counting down my 678 vinyl records before I die of brain disease.
Nat King Cole was a smooth guy. Frank Sinatra-like in Cole’s crooning phase. My father tells me he was a big jazz guy with a trio in his earlier days. This album with a few pops and snaps has the brass blasting and retreating behind universal themed lyrics of love lost and found. “A Cottage for Sale” sets the tone with its title.
My favorite is ‘These Foolish Things Remind Me of You,’ partly because it is a great song but also because I had heard Bryan Ferry of Roxy Music do it. So I had familiarity going in.
A cigarette that bears a lipstick’s traces An airline ticket to romantic places Still my heart has wings These foolish things remind me of you
A tinkling piano in the next apartment Those stumblin’ words that told you what my heart meant A fair ground painted swings These foolish things remind me of you
Ahh, timeless stuff. And you followers of my blog know I have spent some time thinking about time.
Cole was a great piano player and singer. He became in the late ’50s the first black host of a TV series, a variety show.
He was born in Montgomery, yes, Alabama. But his family moved to Chicago when he was a tyke of 4.
As may be expected Cole dealt with his share of racism in the 1950s and 60s including an incident in Birmingham where he was performing in 1956.
According to the Birmingham News three members of the Alabama Citizens Council attacked and tried to kidnap him before being thwarted by law enforcement.
He didn’t finish the concert and never again played in the South.
Counting down my 678 vinyl records before I die of brain disease.
Cockburn, a Canadian folk singer, is smart, a great musician, serious, not so much the life of the party. A self-proclaimed Christian, Cockburn writes melodic dirges, melodic folk/country and melodic rants. Much is about politics.
Put another way, Cockburn is a dude who reads the NY Times and listens to NPR every morning and absorbs it.
He’s smart and he’s pissed.
To be fair he has also traveled extensively on various human rights causes.
Look and listen to the lyrics of “And They Call it Democracy.’
North, south, east, west Kill the best and buy the rest It’s just spend a buck to make a buck You don’t really give a flying fuck About the people in misery
I-M-F dirty M-F Takes away everything it can get Always making certain that there’s one thing left Keep them on the hook with insupportable debt
See the paid off local bottom feeders Passing themselves off as leaders Kiss the ladies, shake hands with the fellows And it’s open for business like a cheap bordello
And they call it democracy And they call it democracy
Have you heard of any other pop artists write songs railing against the International Monetary Fund?
I have to say as much as I admire his writing and Berklee College of Music training, I don’t and/or haven’t listened to this album much. It’s in mint condition. It is packed full of polemics and politics, good music, great guitar playing, but little humor.
Take my old adversary, Robert Christgau, well not yet but once he reads my blog he’ll turn into my adversary, I’m sure. The blatant plagiarism (on both sides). Look what he says about Cockburn in his same review or review of the same album. Here’s his review:
World of Wonders [MCA, 1986] Cockburn’s a very smart guy with as tough and articulate a line on imperialism as any white person with a label deal. Few singer-songwriters play meaner guitar, and as befits an anti-imperialist he knows the international sonic palette. Unfortunately, his records never project musical necessity. The melodies and/or lyrics carry the first side anyway, but though I’m sure Cockburn has some idea what the synthesized pans are doing on the cry of politico-romantic angst and the vaguely Andean fretboards on the Wasp dub poem, what the world will hear is the oppressive boom-boom of four-four drums. B Robert Christgau.
Now that’s what I wanted to say.He stole it. Aha, but I stole it back, slightly altering the lede, the middle and of course came up with a different ending.
I certainly missed the impressive boom-boom of four-four drums. Shame.
One thing to note: His Christmas album, titled just that, Christmas, is excellent. One of the best of my very extensive collection of holiday music (mostly digital).
Counting down my 678 vinyl records before I die of brain disease.
ALBUMS: The Harder They Come (1973); We all are one (12-inch single, 1983)
MVC Rating: Harder 4.5 $$$$; One 3.5 $$$
Jimmy Cliff, mon. If somebody walked up to me right now and said they don’t know anything about reggae music and wanted to buy something, relatively cheap, to see if they like this genre, I’d waver on a recommendation.
It’s a tough one to choose between Bob Marley’s ‘Natty Dread’ and the Jimmy Cliff vehicle soundtrack ‘The Harder They Come.”
‘Natty Dread’ was my introduction many years ago and ‘No Woman No Cry’ is in my Top 10 song list (It is? Ok for now it is.) And when I first heard Marley sing in Rebel Music: “Hey Mr. Cop, I ain’t got no birth-surf-a-ticket on me now,” I thought it was the coolest thing. I still pronounce birth certificate like that to this day.
But as much as I love that album, I might steer this newby to the Cliff album. Esteemed and rarely demeaned Rock Critic Robert Christgau, whom I cite a lot in my musical meanderings, called this the best rock movie soundtrack ever or the soundtrack to the best rock movie or the best rock compilation…Oh you read it, I can’t keep jumping back to Christgau’s Consumer Guide, he’ll think I’m plagiarizing him.
The soundtrack featuring Cliff and others is indeed excellent. Cliff’s ‘Many Rivers to Cross’ is on my Top 10 list of great songs, and so is the Melodians ‘Rivers of Babylon. OK my list is going to need some work pruning and expansion. But the above two songs prove if you got rivers you got good reggae.
Let the words of our mouth and the meditations of our heart Be acceptable in thy sight here tonight
Let the words of our mouth and the meditation of our hearts Be acceptable in thy sight here tonight
By the rivers of babylon, there we sat down Ye-eah we wept, when we remembered zion
I also have from 10 years later a promotional single. I distinctly remember buying this from Charlemagne Records in Birmingham probably 1983 or so. (I also bought a 12-inch single by Niles Rogers, which I hope to find and review when I get to the ‘R’s.).
We all are one (We all) We are the same person (Same person) I’ll be you, you’ll be me (I’ll be me, you’ll be you) We all are one (We all), same universal world I’ll be you, you’ll be me
\The only difference I can see
Is in the conscience And the shade of our skin Doesn’t matter, we laugh, we chatter We smile, we all live for
We all are one … now here’s a great rendition by Cliff himself of his classic:
The US has long been the ‘team to beat’ in the world. Ideally we are also the role model, or should be.
An honest striving for excellence leads us to our exceptionalism mindset. Obviously that can be for good or ill.
Racing to be first.
I suppose we should all be pushing toward being the best we can be, without hurting ourselves or others. (Gosh I’m starting to sound like Joan Baez or Melanie here.)
Good old competition can open eyes and push forward the truth.
Alabama native Jesse Owens won four gold medals, including the 100 meters and 200 meters in the 1936 Olympics, shattering German leader Adolf Hitler’s definition of Aryan superiority.
The Space Race with the U.S. landing on the moon i n 1969, shot the US ahead of the Soviets in one dramatic leap and pushed both sides to advance the technology.
A 23-year-old, 6-foot-4-inch Texan, blew away the competition in the International Tchaikovsky Competition in 1958, getting a Russian standing ovation in the middle of the Cold War.
It’s interesting that Owens and Van Cliburn made their statements on the road in front of dumbfounded but appreciative witnesses, in Berlin and in Moscow.
The judges had to run it by Soviet Leader Nikita Khrushchev on whether to give the first prize to an American, according to Wikipedia citing the Washington Post and Fort Worth Star-Telegram.
“Is he the best?” Khrushchev asked the judges. Yes, they replied.
“Then give him the prize!” he said.
So Van Cliburn was like the first rock star of classical music. Oh, that’s not true, That would more likely be Mozart.
But the fact that the baby faced tall hombre from Texas could defeat worldwide competition is pretty remarkable. Wonder if Cliburn ever goofed around with other genre’s like rock or ragtime or jazz?
In an an obituary upon his death in 2013, the Associated Press noted the 1958 Time magazine cover story described him as “Horowwitz, Liberace and Presley “all rolled into one.”
Wouldn’t it be cool to see Van Cliburn trading licks with Jerry Lee Lewis? Billy Preston. Or Keith Emerson, often considered the best keyboardist in rock
?
Counting down my 678 vinyl records before I die of brain disease.
So if you’re walking down the street sometime And spot some hollow ancient eyes Please don’t just pass ’em by and stare As if you didn’t care, say, “Hello in there, hello”
John Prine
Staying on topic again. Lewy body dementia. Quick quiz.
I’ll answer for you.
Do you forget things, names for example? Um, sometimes.
Are you constipated? Um, sometimes.
Do you have muscle and joint stiffness? Um, sometimes.
Do you have vivid dreams? Well the other night I had some jalapenos on my nachos and man I was dreaming of …..oh, so? um sometimes.
Do you see things out of the corner of your eye, turn to look and it’s gone? Um, sometimes but that’s because I have floaters in my eyes.
Do you have Lewy body dementia? I dunno. What’s Lewy body dementia?
I’ve gone over these angles before but I recently read a research paper published in 2015 that generally backs up much of what I’ve been saying. But it does so in other words, which I found helpful.
I was (mis)diagnosed with Parkinson’s disease first in 2016 and then diagnosed with what we are pretty certain is Lewy body dementia a few months later. What was frustrating as a newcomer to these diseases, is how little absolute knowledge there was because everybody is different, brains are extraordinarily complex and what the hell are all these alpha-synuclein proteins really doing in my brain?
Lewy Bodies in the brain. Public domain Wiki.
The research I was reading was posted on the Bio-Med Central website and authored by Brendon P. Boot of Alzheimer’s Research and Therapy.
Boot said while Lewy body has been pegged at being about 4 percent of all dementia patients, the figure is actually much higher.
“Dementia with Lewy bodies is an under-recognized disease; it is responsible for up to 20 percent of all dementia cases,” wrote Boot. “Accurate diagnosis is essential because the management of dementia with Lewy bodies is more complex than many neurodegenerative diseases. This is because alpha-synuclein, the pathological protein responsible for dementia with Lewy bodies (and Parkinson’s disease), produces symptoms in multiple domains.”
This is great stuff. This is why I have been harping about why the medical community needs know about Lewy, what it is and how to monitor. When a 58-year-old constipated man, who ate recently at Pete’s Nachos and who keeps seeing little bugs scurry across the floor comes into your office, let’s assess for Lewy body, as well as Parkinson’s and Alzheimer’s.
Let’s keep going.
“By dividing the symptoms into cognitive, neuropsychiatric, movement, autonomic, and sleep categories, a comprehensive treatment strategy can be achieved.”
Yes!
“Management decisions are complex, since the treatment of one set of symptoms can cause complications in other symptom domains. Nevertheless, a comprehensive treatment program can greatly improve the patient’s quality of life, but does not alter the progression of disease,” wrote Boot.
That’s what I’m talking about.
Let’s continue.
“Dementia with Lewy bodies is an under-recognized disease. The diagnostic criteria have low sensitivity (12 to 32 %) and high specificity (>95 %) [1], so many cases are not diagnosed,” Boot wrote.
So many cases are not diagnosed. Did you understand the explanation in the that sentence? The thing about the criteria having low sensitivity and high specificity?
Me neither.
Onward.
“Parkinson’s disease dementia (PDD) accounts for a further 3 to 5 percent of dementia cases .”
That’s on top of that 20 percent. (But of what? Need to find total number of dementia patients to put 20 plus 5 percent in context.”)
“Both DLB and PDD are due to the pathological accumulation of alpha-synuclein.” Know this already.
“But patients with parkinsonism for 1 year prior to cognitive decline are classified as PDD [4].”
So they have all these umbrella diseases based on the excess of alph-synuclein AKA as Lewy bodies. And they have to make their educated guess on whether it’s PDD, LBD or DBL, or PD, or whatever, by which symptoms are showing and when, in what sequence, did these symptoms start showing.
Now here’s the kicker, and this is why everyone needs to be able to navigate the system as a patient or caretaker.
“Cognitive decline and parkinsonism are insidious, so the distinction can be difficult to draw and may be influenced by the subspecialty interest of the diagnosing neurologist (for example, movement disorder versus behavioral neurology) [1, 7]. Data on the relative frequency of DLB and PDD may be similarly affected by this subspecialty referral pattern. Whether or not the distinction has treatment implications is difficult to determine.”
So what do we know? We don’t know the cause of Lewy. We don’t know of anything that will cure Lewy or slow its progression. We don’t know how to predict its speed or debilitation because ‘everybody is different.”
How many Lewy cases are out there? I want to know. Docs and patients work together to get diagnoses early and often so we can study this disease. Break down silos between memory specialists and movement disorder experts. They should be in the same place, same building, same floor, same parking deck.
Patients be patient but pressing. Time is precious.
I am channeling my focus on improving the treatment and getting more research based on the words of numerous patients and caretakers with a brain disease who have reached out after my public story. My own situation is working well so far.
Getting the Parkinson’s diagnosis first was not unusual for Lewy body patients for reasons I’ve pointed out many times. I have a neurologist who has helped me get to the right balance of medications to treat Lewy. So I’m all right for now, just fine.
Bye. Heading out for nachos.
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I get asked all the time how am I doing. I guess everybody asks everybody that as an informal greeting. But since I came out publicly with my degenerative brain disease called Lewy body dementia, both the question and answer take on an added layer of significance.
Sometimes I say ‘fine.’ But Catherine has trained that answer right out of me. Those who know my wife know that she responds to people who say they are fine by saying: FINE stands for Frustrated, Insecure, Nervous and Emotional.
So how am I doing?
Not fine. I mean not Catherine’s fine. I feel pretty good. Most of the time.
My disease affects 1.4 million Americans and is the second leading cause of dementia after Alzheimer’s. There is no known cause or cure. Average life expectancy is 5 to 7 years after diagnosed. I am 58 and about 15 months past my diagnosis of Lewy.
So I am not fine. Or, I am indeed Catherine’s FINE. Some of the time.
You could say my awareness that something was wrong with me was nearly two years ago. The key indicator was that my arm was involuntarily pulling up into what Parkinson’s patients recognize as the gunslinger’s position, near where your holster would be if you had one.
So in August of 2016, it was no surprise that when we went to the doctor and neurologist that we came home with the diagnosis of Parkinson’s. I say ‘we’ because Catherine is so interwoven into the fabric of my being and is taking this thing on at my side. And so are my daughters, and my friends and my employer and my… well you get the picture. I have a lot of people who care for me.
But other things — the advantage of hindsight and lots of research — led to other things. I had been having some memory problems for a while, also sleeping problems and also anxiety of the likes I’d never had. This led to a psychological evaluation, which led to the conclusion that while I was no Einstein to begin with, I appeared to have lost some cognitive function. Enough that the diagnosis came back Lewy bodies, which simply means that i have been having cognitive problems from at least the onset of the gunslinger, and probably before that.
With Lewy body patients, an initial Parkinson’s (mis)diagnosis is not unusual. In the brain, the disorder is practically the same malfunction in Parkinson’s and Lewy’s patients. An overabundance of proteins from who knows where are killing neurons which are pretty vital as part of the brain’s communication hub to the rest of your body and mind.
It’s like an airplane (slowly) losing it’s ability to communicate with air traffic controllers. Oh, and automatic pilot quits working as well.
According to neuroscientists most folks are losing about 7,000 brain cells a day. Even though you have 100 billion brain cells to start with, if you start losing millions to the alpha synuclein hordes, it’s going to wreak a little havoc.
So Lewy is similar to Parkinson’s and some doctors go so far as call it a type of Parkinson’s. Here’s the difference, Lewy by definition affects a person’s mental faculties. There’s dementia all the time with Lewy. Not so with Parkinson’s, although eventually Parkinson’s patients, if they live long enough, may show dementia, as do many people when they age. Many Parkinson’s patients present symptoms of uncontrolled movement or shaking, like Michael J. Fox. That side can come with Lewy’s as well.
Here’s the Lewy Body Dementia Association’s explanation.
In a way, it’s all semantics. There is no definitive tests for these diseases until we open up the skull and take a look. There’s even research that maybe its not the proteins that are killing the neurons after all.
I do know there is no clear prediction on my future. I know I may not have much more time. But I might be around for a while and the medications, which are not a cure, keep symptoms tamped down.
It’s a disease or an umbrella of diseases that has different effects on different people. The key is figuring out how to treat it.
After years of suffering and misdiagnoses, Robin Williams killed himself. When they looked at his brain, they found it was full of this flopping protein, Lewy bodies.
So we need awareness. We need more research. We need it urgently. Someone who has Lewy who is misdiagnosed with Alzheimer’s may face serious harm or death if given certain medications to treat symptoms of Alzheimer’s disease — such as some anti-psychotic drugs.
So how the heck am I?
I’m happy to be able to write this to get the word out.
I am happy to see people who care.
I am happy to care for people while I still can.
I am sad to see tears and am happy when they turn to smiles, in the moment.
In this moment, I feel as good or better than I did a year ago, thanks, I believe, to finding the right balance of medications.
I’ve written that this blog is therapeutic. I am counting down my 678 records as I go along. My goal, or rather MY PROMISE, is to finish off those records. I haven’t counted recently but I’m over 90.
I believe I am close to 100.
I believe I am close to. I believe I am close. I believe I am. I believe I. I believe.
Put another way, Cockburn is a dude who reads the NY Times and listens to NPR every morning and absorbs it.
