As many know I have dementia with Lewy bodies, a brain disease that has symptoms similar to Parkinson’s and Alzheimer’s.
Another person with Lewy shared with me something I think that will be highly beneficial, not just for folks with Lewy but for those with other chronic diseases as well.
Let’s call it a “Report Card for your Doctor,’ or ‘Progress Report for Doctors and other caregivers.
This running document is something you update between doctor visits.
Thanks to a fellow ‘Lewy’ person and his wife, caregiver, I am able to share an example of how this works right here. It’s pretty self-explanatory. I have taken out the names for privacy’s sake.
I think this could be a life prolonger or at least a life comfortor, especially for those with memory issues as changes in symptoms are so important for the doctor to know about. Everyone in this situation has gone to those hard-to-get appointments with a neurologist only to remember that you forgot to say something about something. This puts it all in black and white and would serve as a patient-doctor conversation.
I think publishing this is helpful information on two levels: 1) For everyone with a chronic disease to use to improve diagnosis and treatment, and 2) More specifically for those living with Dementia with Lewy bodies to see the chronicling of the disease in a real person.
To see the full report (if you missed the link above clickhere.
The tears wrenched out of human beings by Bobby Goldsboro can be measured in gallons.
Hundreds, thousands of gallons.
‘Honey’ was a huge worldwide hit in 1968 for Goldsboro, born in Florida but who grew up in Dothan and attended Auburn University. Bobby Russell, who wrote ‘The Night the Lights Went Out in Georgia,’ was ‘Honey’s’ writer.
It was a sentimental tissue-thin manipulation of a song. It was the best of songwriting, and the worst of songwriting.
I’d admire the suspense and mystery built up around the singer’s descriptions of his wife/lover. The La-Tee-Da casual storytelling style draws you in as it drops foreboding hints all the way.
My critique is that the words are often silly, and combined with the syrupy strings, comes off as maudlin. And the casual storytelling style, once you get the whole picture, is kind of creepy.
That said, the songwriter used some deft devices to make this sad. For example never really telling us what happened requiring our brains to think harder to speculate what happened a la ‘Ode to Billie Joe.’
My mother, a longtime educator, gave me this album recently, but we used to cry in the car over it decades ago. It was a No. 1 hit in the U.S. and charted all over the world.
So again the overarching question here is what happened? She died, but what other clues are there.
Let’s react to the lyrics and find out.
Song lyrics italics, my comments bold.
Honey by Bobby Russell, performed by Bobby Goldsboro
See the tree, how big it’s grown
But friend it hasn’t been too long It wasn’t big (good open, foreshadowing) I laughed at her and she got mad, (what was so funny?)
The first day that she planted it Was just a twig Then the first snow came and she ran out To brush the snow away So it wouldn’t die (Foreshadowing, concisely paints picture of soft-hearted, sentimental person. Was the tree somehow going to be cause of death? Listeners are tuned in now) Came runnin’ in all excited, Slipped and almost hurt herself (So she’s becoming clumsy but husband thinks it’s hysterical) And I laughed till I cried (throwing the word cried in there is like a subliminal message readying the tear ducts.)
She was always young at heart, Kinda dumb and kinda smart (Well you are no rocket scientist either BoGo..) And I loved her so And I surprised her with a puppy (Uh oh gratuitous puppy introduction: he’s pulling out all stops in the manipulative attempt to make you cry). Kept me up all Christmas Eve two years ago (aw he loves her so much, he not only gave her the puppy but lives with the dog causing sleep deprivation). And it would sure embarrass her When I came in from workin’ late (working late, huh?) ‘Cause I would know That she’d been sittin’ there and cryin’ Over some sad and silly late, late show (again showing how ‘endearing’ her sentimentality is.)
And honey, I miss you and I’m bein’ good (Working late, huh?) And I’d love to be with you if only I could (here we go again, hint hint: Where did she go?)
She wrecked the car and she was sad (Oh my gosh is she going to die of car wreck injuries?) And so afraid that I’d be mad But what the heck Though I pretended hard to be Guess you could say she saw through me And hugged my neck I came home unexpectedly And caught her cryin’ needlessly (Needlessly is certainly in the eye of the beholder. I mean, did she get bad news like perhaps she was DYING!) In the middle of a day And it was in the early spring When flowers bloom and robins sing She went away (Reach for tissue.)
And honey, I miss you and I’m bein’ good And I’d love to be with you if only I could (Sure about that?)
One day while I was not at home (Working late again?) While she was there and all alone The angels came (Good gosh, the Hell’s Angles took her out. What in the name of everything holy were you involved in, man?) Now all I have is memories of honey (tears) And I wake up nights and call her name (tears) Now my life’s an empty stage (tears) Where honey lived and honey played And love grew up And a small cloud passes overhead And cries down on the flower bed (more tears, some blubbering) That honey loved
And see the tree how big it’s grown But friend it hasn’t been too long It wasn’t big (good writing example, coming full circle) And I laughed at her and she got mad The first day that she planted it, Was just a twig (sob)
(One question: Can a twig grow into a tree?)
Other songs on his ‘Greatest Hits’ never approached the sales and popularity of ‘Honey.’ His first hit was “See the Funny Clown,” who happens to be crying on the inside. The song is way inferior to the Smokey Robinson and the Miracles hit “Tears of a Clown.’ He also had a hit called ‘Watching Scottie Grow,’ that for some reason isn’t on this album.
Goldsboro has another song on this disc called “The Straight Life” with lyrics that kind of blow my mind. Here’s the second verse of the song.:
Sometimes my thoughts may find me in Mexico, Drinking tequila going out of my mind Having a ball on a couple ‘a bob, Treating the ladies to corn on the cob, Leaving the straight life behind
Huh? First off, couple a’bob is an English term for money not Spanish. Tequila will make you nuts but not sure about the hi jinks behind a tequila and corn cob party.
This is where the children are given a kid-friendly explanation of the upcoming sermon.
It was a holiday weekend so not many children were in attendance, but one of the kids made up for it with a barrage of questions and stories.
The little girl had something to say about almost every sentence uttered by Director of Christian Education Patti Winter, a veteran children’s educator, who has mad skills at handling children eruptions diplomatically.
Patti waited patiently through each anecdote coming from the child before she gently steered the conversation back to her message.
The message on this day was the ‘salt of the earth’ passage, Matthew 5-13:
“You are the salt of the earth. But if the salt loses its saltiness, how can it be made salty again? It is no longer good for anything, except to be thrown out and trampled underfoot.’
Patti talked about how salt is helpful to make food taste better. She said salt is also used in dyes to make colors brighter and, if that wasn’t enough, she said salt goes into plastics to make the plastics better. She did a little more talking about the virtues of salt and the meaning behind the passage before getting ready to go. The children’s program had by now taken on a little extra length.
ALBUM: And Then There were Three … (1978); A Trick of the Tail (1976)
MVC Rating: Three 3.5/$$$; Tail, 3.0/$$$
Genesis, I’m sorry, makes me want to exodus.
I’ve tried. I have two of their later albums post-Peter Gabriel. So maybe I haven’t heard their good stuff.
The ‘Three’ album title plays off the fact that members were dropping from the band like water rats from a sinking barge. Ok, that’s a little harsh.
Yet that album produced probably their most accessible song “Follow Me, Follow You,” a Top-40 friendly song, but certainly no tour de force. Maybe I need more time with these to see what the fuss was about.
On Trick of the Tail I hear chunky synthesizer/keyboard chords aligned with semi-melodic verse and nothing that makes me say, ‘Wow, in the beginning there was this great band.’
I am not keen on most art-rock or so-called progressive bands. I like Yes better than this. I’ve learned through re-initiation during MyVinylCountdown of some interesting work by Emerson Lake and Palmer. But Genesis just leaves me feeling blase’ and that’s not what rock music is supposed to do.
The songs seem to meander down the river, which could be nice, except when the river raft stops, you are five miles from your car.
One of the best songs on ‘Tail’ is one about a mythological beast called a ‘Squonk.’ On ‘Three’ the hit is good, if not a little light.
Got to find a way to bring some love in here today.
Marvin Gaye is smooth and soulfully cool. For good solid soul, Gaye knew no peer. He was the male counterpoint to Aretha Franklin.
I’m not counting out Otis Redding, Wilson Picket, Al Green or any of the other pioneers in this realm. Gaye was a little less of a soul belter than Aretha. His sound was seductive, jazzy soul — sometimes with a social message (What’s Going On.’)
I’m not saying he couldn’t belt either, on ‘Grapevine’ he belts.
Marvin’s life ended too soon, in 1984, tragically at the hands of his father.
I’ve written this elsewhere on the blog: His version of the National Anthem at the NBA All-Star game in 1983 brought tears to my eyes as I was hearing it in real time on live television. He did a soulful, and controversial take, on our National Anthem. I thought it was a touching rendition in the style Mr. Gaye sings. Jose Feliciano did a Spanish-tinged version, more than a decade earlier. He took some flak, as well.
The Gatlin Bros. are a little out of my realm. But I remember why I got this. Someone or someones were saying how much I looked like Larry Gatlin. I didn’t really follow the Gatlins but I knew they were wildly popular in the 70s and 9. So with every one calling me Larry I better figure out who he was. Used records, don’t know where. but I picked up “Greatest Hits.” My hair has long ago left me so I don’t think I look like Gatlin unless he has a large hair deficit.
This is the type of country I didn’t like a bunch–county-politan — or something like that. (It’s all right with Dolly).
But I did enjoy some of the songs here: Broken Lady and ‘Statues Without Hearts stand out.
I am also a sucker for good falsetto singing and Larry’s pretty good.
ALBUMS: Peter Gabriel (1977); Peter Gabriel (1980).
MVC Rating: 1st self-titled: 4.5/$$$
2nd self-titled: 4.0/$$$
Hope everybody has had enough time with ‘The Gaugin Years’ The History of Music and Dance in Tahiti. (Scroll down if you haven’t). That was the start of my G-music section and up now is Peter Gabriel, a political, intelligent, supporter of world music. We’ll see more of him in this blog soon as his longtime band, Genesis, comes up on my alphabetical course.
I have the first and third Gabriel albums. Oddly, he didn’t name his first four albums. They are called Peter Gabriel. To ID them people add a descriptor like ‘melt’ for the third one because it has a face appearing to melt on the cover.
I fell out of Gabriel’s thing about when “Shock the Monkey’ and then ‘Sledgehammer’ — MTV’s all time favorite video – propelled Gabriel from cult status to star. One thing I didn’t like, and others feel free to chime in, is that he seemed to employ an echo effect on his voice, especially in the “So’ era. Am I correctly hearing that? It is almost as if he didn’t have confidence in his natural sound. But the songwriting on Solsbury Hill, about a spiritual experience the Gabriel had, is about as good as it gets.
Climbing up on Solsbury Hill
I could see the city light
Wind was blowing, time stood still
Eagle flew out of the night
He was something to observe
Came in close, I heard a voice
Standing, stretching every nerve
Had to listen, had no choice
I did not believe the information
Just had to trust imagination
My heart going boom, boom, boom
“Son”, he said, “grab your things, I’ve come to take you home”
Biko’ on the second album is also a favorite of mine. It’s a powerful song with African rhythms lamenting the death at the hands of police of Steve Biko, an anti-apartheid protester.
September ’77
Port Elizabeth weather fine
It was business as usual
In police room 619
Oh Biko, Biko, because Biko
Oh Biko, Biko, because Biko
Yihla Moja, Yihla Moja
The man is dead
The man is dead
ALBUM: The Gauguin Years: Songs and Dances of Tahiti. (Recorded on location by Francis Maziere 1972)
MVC RATING: 3.5/$$
So how did I pick up this? ‘Field recordings; of the songs and dances of Tahiti.’
I have no idea, though I’ve been known to poke around at library book sales, which sometimes had records, like this one.
From the liner notes on this Nonesuch record: The music on this record is not for the tourist trade; It’s Old Timey Polynesian. Yes there are love songs and hulas here — but also war chants, histories, prayers and protest songs.”
It is exotic — but to my ears it sounds about what I would expect, Drum beating, interlocking chants with harmony.. Maybe the movie depictions of Tahitian singing and dancing weren’t far removed from authentic.
All I need now is a coconut drink.
BTW, this is my first ‘G’ record (for Gaugin). We are now done with the F’s unless aI find another lurking somewhere,later. Now it’s time for the G’s as in (Grateful Dead, Dexter Gordon, and Peter Gabriel., among many others. I’ll also catch up with the numbers today.
This is one of an occasional series of opinion columns on Lewy body disease, other dementias, and end of life issues written by a writer who happens to have the brain degenerative disease. A previous version of this appeared on AL.com.
As I’ve pointed out before, we live in a world where Lewy body disease is virtually unknown. That’s not good for the more than a million folks that have the second leading cause of dementia after Alzheimer’s.
That’s not good for the uncounted others who have it but don’t know they have it, either because the doctor didn’t make the diagnosis, missed the diagnosis, or the individual is passing off early stages of the disease as something else.
“It is shocking how few doctors, even neurologists, recognize this condition,” said Dr. Samantha Holden, assistant professor of Neurology at the University of Colorado School of Medicine. “Alzheimer’s gets most of the attention, even in the research community, and DLB is relegated to the category of “Related Dementias”, which is unacceptable.”
Holden is also the co-principal investigator in the Lewy Body Dementia & Neurology Center of Excellence at the university.
Like me, Holden has been scratching her head over LBD’s anonymity. Part of it, we both agree is the complicated nature of the disease itself and its wide ranging symptoms, which leads to an alphabet soup of disorder names.
Holden says this chart is a great way to start understanding.
As you can see by the chart the broad category is Lewy body disease. That’s describing a brain disorder that creates the proteins believed to be the culprit of damage through brain cell loss. That includes Parkinson’s and Lewy body dementia. (Guess which one people have actually heard of.)
Both Parkinson’s and Lewy body, as you can see, are sisters under Lewy body disease.
Alzheimer’s is not on this particular chart because it is not a Lewy body brain malfunction. With Lewy body disease, the proliferation of a protein, which when clumped together are called Lewy bodies. They are named after their founder, Dr. Friederich Lewy, a German neurologist.
And please understand I am not an expert in the science by any means.
What’s in a Name
So to recap and offer questions I have for further exploring.
Lewy Body Dementia (LBD) is an umbrella term taking in both Parkinson’s Disease with Dementia (PDD) and Dementia with Lewy Body (LDB). Are the proteins the killer here or are they just what have been left at the crime scene and another unperceived entity is the triggerman?
Alzeimer’s does not fall under that LBD spectrum because it is a different type of malfunction in the brain. However, sometimes people get both — (Really? As if we don’t have enough to worry about.) What is the relationship between Alzheimer’s and Lewy body? If any?
I know this is confusing. But in many cases whether you have LBD or whether it’s PDD, eventually you will see the same (bad symptoms), physical impairment and cognitive impairment. Although some diagnosed Parkinson’s may never get dementia, correct?
That’s because every Lewy is his own person and afflicts different folks in different ways. Which leaves wide paths for optimism that the symptoms may be slow and mild. That’s the hope for those with the disease but, of course, those hopes can also be dashed.
This is part of an occasional series of stories on Lewy body dementia, other dementias, and end of life issues, by a long-time writer who happens to have LBD.
The chart is a 10-question check-up list to help doctors use symptoms and circumstances to more accurately diagnose the disease.. There is no known cause and no cure for this disease which shortens lifespans.
Here it is.
The Lewy Body Composite Risk Score
Rate the following symptoms as being present or absent for at least three times over the past six months. Does the patient:
Yes
No
1) Have slowness in initiating and maintaining movement or have frequent hesitations or pauses during movement?
2) Have rigidity (with or without cogwheeling) on passive range of motion in any of the four extremities?
3) Have a loss of postural stability with or without frequent falls?
4) Have a tremor at rest in any of the four extremities or head?
(5) Have excessive daytime sleepiness and/or seem drowsy and lethargic when awake?
6) Have episodes of illogical thinking or incoherent, random thoughts?
7) Have frequent staring spells or periods of blank looks?
8)Appear to act out his/her dreams (kick, punch, thrash, shout or scream) while still asleep?
9) Visual hallucinations (see things not really there)?
(10) Have orthostatic hypotension or other signs of autonomic insufficiency
NOTE from LBDA: Scores were significantly different in DLB patients compared to controls and those with Alzheimer’s. The Composite Risk Score discriminated between individuals likely to have underlying Lewy body disease from those who did not. Using a cut-off of 3, the Lewy Body Composite Risk Score had a sensitivity of 90%, meaning it identified 90% of those diagnosed with Lewy body dementia.
Follow Mike Oliver on AL.com and www.myvinylcountdown.com
