,On this day in 2011 the worst tornado outbreak in memory slammed the Southeast with Alabama taking the brunt of it.
Dozens of tornadoes killed 250 people in this state alone. I spent a year writing about the aftermath with a team of great reporters. We exposed problems that included FEMA evaluations of houses that defied logic. One story I did featured a Joe Songer picture of a family standing in their house with all four walls gone. FEMA in its reports called it insufficient damage to qualify for a FEMA grant. Here’s story and pic.
Another story that I did on an anniversary of the storm I think nicely described how the day unfolded. Must read to the end though it takes a click at the end of the first part.
10 a.m.: It’s Friday, usually a good day, but I have some work to do before I can relax. Check-ins. Sleep Through the night, awesome. Diet. Had good low-carb lemon cilantro chicken last night Catherine made. Cheese stick for breakfast. Mental Health. Like I said today is Friday and that’s always an extra bubble of electricity of the positive kind. People in the newsroom feed off of each other — so when the newsroom is buzzing, everybody picks up the vibe. (And vice versa but won’t explore that right now). I’m currently trying to figure out how to channel my efforts into one big cohesive plan. I’ve got several, no make that many, avenues and ideas. And I’m excited about getting all cohesive. In another post likely today I am going to lay out some ideas, some specific, some broad about my vision for the July 20 Mike Madness event. I’m hoping and planning to make it bigger than ever. And I’ve got a few tricks which I will discuss later today or over the weekend. Happy Friday readers. From a broader standpoint, I will say that I can tell this thing is progressing, however slowly. With doctor consultation, I’ve added a small boost to my dosage of carbidopa levadopa medication which treats Parkinsonian physical symptoms such as tremor and the aforementioned fine motor skills skills such as typing or picking something off the ground.
Now wait, I’m going to do a joke here as I am wont to do.
So, you see one metric I use to determine fine motor skill deficits is the value of a coin that I will actually bend down and pick up.
I noticed this when I walked by a dime the other day. Will stop for quarters though. (This Parkinsonian/Lewy metric is not for everyone. Ask your doctor if you need to stick to dimes for a while, or maybe wait only for dollars.)
9:55 a..m. Typing OK this morning. Left hand a little shaky. I’m just slower. I hope my brain is cooperating with my request to resist at all times the sticky quicksand those rogue proteins create. Check-offs. Sleep. Did well, watched basketball until I couldn’t hold my eyes open. Had a mild calf musclle spasm that I caught and rubbed out before it could start its torture. That addresses the category Pain. I played basketball last night. It’s one of two days of good exercise I get every week. But I’m slow moving in the morning after these. Trying to get one or two days where Catherine and I can go do some gym stuff, weights, possibly Yoga. I have to stop here and describe a play last night in which I delivered a pass to Ramsey Archibald. We had a break going, I was down court running hard after the other team turned it over. Teammate Kevin Storr (who was red-hot shooting BTW) hit me in stride at about the foul line, defender coming on fast. I knew Ramsey, on my team, was coming on fast from behind. I made a little look up feint like I was going to go up for the lay-up setting the defender into leaping stage. Instead of putting it up, I bounced it with two hands — like a football snap — between my legs, Ramsey caught it off the bounce and put it up for a layup. Mental Health. Good.!
Day ahead will include some op-ed reading and Mike Madness planning.
I have obtained three very interesting albums from a nice couple who wanted to donate for the cause.
That cause being raising awareness and funds to fight Lewy body dementia. (Read my story here).
Wow! Here’s what they got me!
Three very interesting records including Birmingham area favorites from the 1970s: Buckingham Nicks. The couple, Stevie and Lindsay, appearing ‘nekkid’ on the cover (top right) seems to be shouting: We are lovers!
Of course,, the irony would come later after becoming famous in Fleetwood Mac, the couple split up and in their misery produced some of the best music of their lives, break-up songs such as, ‘You can go your own way’ and ‘Dreams.’. No more ‘nekkid’ album covers, though. Not exactly groundbreaking, the album is really good however. It sort of flopped initially. It strongly presages the latter Fleetwood Mac sound in style and melody. And of course the rest is history as Fleetwood Mac became one of the biggest selling bands of all time.
Interestingly it sold better in Alabama than just about anywhere.
AL.com rock writer Matt Wake wrote “…the group became an unlikely sensation in Alabama after Birmingham progressive rock station WJLN-FM gave the LP heavy spins, particularly spiraling seven-minute track “Frozen Love.”
So how did these records come to me?
Several weeks ago a man named Jim Stubbs of the Birmingham area, emailed me to ask if I had Buckingham Nicks and, if not, do I was want it?
Long story short we met at John’s Diner, I met his wonderful wife Debbie who used to know me when we both worked at the Birmingham News in 1983 –we overlapped a few months.
The Stubbs said they just wanted to donate for the cause, bringing awareness to Lewy body dementia, which I have and try to do just that — raise awareness — with my blog www..myvinylcountdown.com
The Stubbs are good people, and I want to figure out a way to make their pledge count. One idea is to auction off some collectible records to go to Lewy body dementia research and awareness.
I don’t know how much these albums are worth, maybe $50 altogether? $100? $300? I definitely have some records that would qualify as collectible. If we can get even 25 to 50 albums I’m pretty sure we can raise $1,000 to $3,000 like that with some good effective advertising.
Here’s the skinny on what I know about the other two albums which have bizarre backstories.
Billy Joel “Cold Spring Harbor”
Liner notes says he checked into to a mental hospital around this time. There’s also some who call it his debut because he recorded it in 1971 even though it wasn’t released until 1976 after Joel’s other work became big.
It opens with the original version of ‘She’s got a Way.’ that’s followed by the blistering honky tonk piano and guitar tune called ‘You Can Make Me Free.’
The weirdness of this album is they recorded it 8 percent too fast. I put this on the other night and my wife commented “That sounds like Billy Joel as a child.”
Joel apparently went ballistic over the unfixable error. He called it his chipmunk album.
Thanks Jim and Debbie for turning me on to these records. They may provide the base for a solid charitable drive either part of Mike Madness weekend or separate. That’s July 20 on the hoops and after party, keep alert for details.
Joel explains in this video:
Jimmy Buffet, “High Cumberland Jubilee.”
Buffett had a problem with his album that,like Joel, caused a long delay before it was released.
Here’s what Wikipedia says about this album: Due to its limited appeal, long periods out of general release, and stylistic differences with the rest of Buffett’s work, High Cumberland Jubilee (along with the similar Down to Earth) was often not considered part of the chronology of Buffett albums by fans or even Buffett himself. It was his final album with Barnaby just before his signing with Dunhill and the recording of his 1973 breakout album, A White Sport Coat and a Pink Crustacean.
This was often called his ‘lost’album. ‘
I think it is great. Picking and grinning music that I would choose to listen to over his later overplayed music. I’m not saying his later music is bad, I’ve just heard enough — for now. Until I go to the beach.
So three good records. Value is difficult to place on these as I roam around the Internet. BN for example is selling from between $20 to $100. I see Buffet’s going from $7 to $55 but the median seems to about $10, according to Discogs.. And Joel’s cold harbor ranges on Discogs from about $9,99 to $75. But on FPS 2700 it’s median range is about $15.
9::12 a.m: Typical start of the day spent about 10-20 minutes extra looking for stuff. I ended up forgetting my satchel of record albums. I usually take some records that I am working up reviews on, because sometimes liner notes are useful. The covers and the discs themselves often offer up the date released — although a surprising number do NOT do that which means an Internet search. There are also tidbits about who else joined the band to sit in on a song or whatever. Drummer Jim Keltner (Derek and the Dominos) is on half my records it seems, I swear, even a Peter Himmelman one. He must be in his late 70s?
Check-ins. Sleep. Fell asleep watching NBA so even though I didn’t get to bed until after midnight, part of that was sleeping on the couch. Pain. No spasms. No major tendonitis or arthritis or extraordinary Lewy sumptoms right now. Slow typing. Fine motor skills like typing are my most frequent unwelcomed symptom. I have basketball tonight. Mental Health. Good. No depression. No despair. Just middle of the road right now. Thinking with my brain about my brain, Albert Einstein and black holes. Played Dwight Twilley album before work. Great song: “Outta My Hands.”
It’s nearly 8 a.m. I’m not typing well right now. It is increasingly taking awhile to get my hands working. This is my new Daily Journal. Every day I’m going to write about myself, most specifically healh-wise.. But there are no rules. The rest of my blog will continue as before, counting down my 678 vinyol records to bring awareness to this horrible brain disease I have: Lewy body demenia and I will still be filing longer form essays and ruminations and even news.
I was going to try to do this at night but I fell asleep in my bed with my fingers on the keyboard. NP is Lynyrd Skynyrd’s ‘Cry for the Bad Man.’ I’m in the L’s in my countdown alphabetically. I m also listening to Led Zeppelin. I am usually through three album sides before I get to work.
Wow. Zeppelin and Skynyrd. Two totally different groups but co-equals in virtuosity, popularity and influence. Free Bird vs. Stairway to Heaven. Love em both. (although I barely listen to them any more after hearing those songs 1 (yes) 1 million times each.
Oh and because the journal will be a lot about me and the disease and its erosion of me, I need some health touchstones.: Sleep. Has been good although I had two of those extremely painful rolling muscle spasms this last week in my calves. It happens at night and I usually wake up yelling. Eating: Officially on South Beach low carb diet although I had a chocolate bunny yesterday, solid melt-in-your mouth-chocolate. But constippation is a battle I fight with prunes.. Mental State:. If my mentality was a state it would have a bumper sticker saying ‘Thank God for Mississippi.’ In other words, it could be worse. Pain I’ve had two painful rolling muscle spasms this week. It’s the kind where I feel like the rodents that I sometimes hallucinate are somehow making their way under my skin, into my my calf, and running amuck. Most of the time I am not in pain,however, and feel fortunate about that. The brain itself does not have pain nerve endings — it is my understanding, and I am thankful for that.
Watch for these updates every day.and I’ll keep the music flowing. Thanks to Lori Oliver, my sister-in-law, for suggesting this journal feature, saying it would greatly enhance my regular but sporadic posts on my health. I just look up to the universe and say let me keep words and I’ll make sure that I try to string them together into something that makes sense. (His and Hurricanes is the exception).
I’m kind of new to this Record Store Day thing. Last year I went to Charlemagne and Renaissance on Birmingham’s Southside. Don’t even remember what I bought to be honest. I just wasn’t in to shopping for records, I guess.
This year I was feeling it a little more as I continue to countdown my record collection officially standing at 678 records (there’s more than that now because of outings like the one Saturday.
I went to Seasick this time and confirmed what kind of collector I am.
I spent $10. For 10 records.
While others were pulling multicolored vinyl reissues of popular new or rediscovered hip music at $20, $30, $40 a pop, I dove into the bargain bin. It’s easy to take a gamble with 1 buck rather than $50. Now what I got may not be impressive to a ‘real’ collector, it affirmed my growing awareness that I am a bargain record hunter. My collecting began in the 1960s, 1970s as a kid. I have 678 from then which i am counting down on this blog to raise awareness of this brain disease I have: Lewy body dementia.
More than half of my records are likely cutouts. If I have any expensive collectibles, I can tell you its by accident for the most part.I went about 25 years without buying a record when CDs came out in the 1980s.
So Saturday was confirmation of this aesthetic. No Record Store Day fancified records for me –though I don’t begrudge those who did walk away with shiny new vinyl. In fact I’m envious. But I’m also excited about my little 10-spot haul. Here’s my list in alphabetical order. I picked these in 30 minutes arriving about 3 -something.
The Carpenters — “Horizon.” A Rolling Stone critic called this album the Carpenters”most musically sophisticated.” For me they are a guilty pleasure featuring Karen’s beautiful voice. This somewhat underlooked album has Solitaire’ and ‘Only Yesterday.’ For my wife, Catherine, there’s no guilt. One buck still in shrink wrap.
Rick Derringer “All American Boy.” I was disturbed when I lost this record many years ago. I loved it at 14. I was ecstatic finding it in the $1 bin Saturday. “Rock and Roll Hootchie Koo.” A quarter if you can name two bands Derringer was in.
Dave Edmunds “D.E. &th” — I’m a big fan of Rockpile, Nick Lowe and Edmunds.
Four Tops “Soul Spinning” — Early soul from this Motown quartet. A little more raw than their immensely popular later work.
Mouth and MacNeal “How Do You Do.” The song is the best-worst song in the world as declared by MyVinylCountdown.com Had to buy it for a buck. Had never actually seen this before.
The Partridge Family -“Up to Date Nostalgia purchase. Enjoyed the TV show when I was 10. David Cassidy and Shirley Jones. were the only two allowed to sing. The others lip-synced professional singers.
The Raiders “Cherokee Nation.” Big hit was the title song. Wasn’t it controversial? Paul Revere was gone from the group at the time but ostensibly the most talented –Mark Lindsay — was keeping it real;
Rainmakers — When this came out in 1986 Newsweek called it “the most auspicious debut album of the year.” “Let My People Go-Go.” I used to have this on cassette and played it to death. Awesome find for me, these Kansas City, Mo., boys.
Swimming Pool Q’s “Blue Tomorrow” I have this album. It’s one of my favorite albums. Why would.n’t I buy a back-up copy for a buck.
The Young Rascals “Groovin’ — I have their greatest hits. But critics say this is their best album. Title song is classic. This group had about a dozen hits over several years.
ALBUM: Love Tractor , ‘Themes from Venus’ (1988); Let’s Active, “Big Plans for Everybody.’ (1986).
MVC Rating: Tractor 4.0/$$$; Active, 3.5/$$$
I was disappointed to pull out my Love Tractor album and find that it was warped. I’m talking about a big warp at the inception of the record which makes it skip. Sadly I am probably going to have to throw it away. And that’s a shame because I remember it fondly. Another Warped Hometown Band.
I combined Let’s Active with this as well because it was part of a group of records that were my college soundtrack. Both had Mitch Easter connections and Athens, Ga., connections, my more or less hometown. Let’s Active was from, I believe Chapel Hill, a university town that followed Athens’ as an incubator for good music. Of these Love Tractor is more varied and a little bit more alternative or should I say Avant Garde.
They started out as a mostly instrumental band. When they found their words they were mostly super silly but cool super silly like “I Like My Power Tools.”
Let’s Active was often compared to REM but except for some trebly jangly-ness of the guitars I didn’t see them that like that. I thought they sounded more like Ryan Adams.
Love tractor had the wonderful ‘I broke my saw’ in the spirit of Big Fat Tractor by the Swimming Pool Q’s.
I received an offer to ask a few questions of dementia expert John DenBoer who is behind a Netflix documentary on dementia premiering today at a venue in Phoenix before going on Netflix May 1.
It is called ‘This is Dementia.’
I will say upfront that I am pleased the doctor is inspired to push for more awareness after his caretaker experience with his beloved grandmother. I am still a little uncertain why there is not more discussion specifically of Lewy body disease, but I haven’t seen the movie yet.
Dementia experts has documentary airing tonight(4/11/19)
If there’s an internal medical debate about what Lewy body is or even if it exists — some docs say it’s a different kind of Parkinson’s — let’s get to the bottom of it so we can properly research it.. DenBoer points out ‘vascular’ as a top type of dementia — as well as Lewy. Everyone agrees that Alzheimer’s Disease is No. 1.
He agreed with my worry about — and I’ve expressed it here before — a lack of awareness could hurt Lewy body’s quest for research dollars. A lack of awareness seeps into the whole system.
From the patient who can’t get a proper diagnosis to the patient rigged up to a brain stimulator which may be contraindicated for their particular type of disease. We need more doctors like DenBoer to keep asking these questions and, meanwhile, helping push non-invasive brain exercises to tamp down symptoms.
He’s also focusing on early diagnosis which I think may be the most important first step toward cure. The more time we have to study these patients and treat them whether its medications or brain exercises the closer we will get.
Here’s DenBoer with answers to 8 questions from me via email.
OLIVER: How did you become interested in studying dementia?
DENBOER: It was really a synthesis of a tough personal situation (my Grandmother, who I had a special relationship with, developing dementia) and my professional pursuit in the study of Geriatric Neuropsychology. These two things coincided, which galvanized my personal and professional mission to help people with dementia. My primary emphasis is to do this through early identification and mitigation of cognitive and functional decline.
OLIVER: Tell me about the Netflix documentary and what are some of the themes?T
DENBOER The documentary is entitled “This is Dementia.” It chronicles my relationship with my grandmother, my relationship with my patients, and my quest to impact this terrible disease. I feel that it is a realistic yet hopeful portrayal of the effect the disease has on people and their families.
OLIVER: There seems to be confusion over the types of dementia. I have Lewy body dementia, sometimes called dementia with lewy bodies. Can you briefly describe the differences in the types of dementia?
DENBOER: Dementia is an umbrella term to describe the general neurodegeneration of the brain. Alzheimer’s disease is the most common type of dementia, although vascular forms of dementia are also very common. Lewy Body dementia can also be fairly common. What makes this more complicated is that there are really no pure forms of dementia – all are typically combinations of each other.
OLIVER: What are the most promising areas of research for medications to stop or slow down the disease progression?
DENBOER: Unfortunately, research in the area of medications has not been very promising. By far the best way to slow down the disease is a combination of aerobic and cognitive exercise. Medication has been found to work at less than 5% efficacy. Unfortunately, there is nothing that we know of to stop the disease entirely.
OLIVER: My concern after learning of my diagnosis was that there was little awareness of Lewy body dementia, even though my understanding is that it is the second leading type of dementia after Alzheimer’s. This concerns me because if people don’t know about it they won’t get proper treatment – like Robin Williams who had Lewy body. Your thoughts?
DEBOER: Unfortunately, there is far too little awareness of all types of dementia. We do know about Alzheimer’s disease, although other forms of dementia (such as Vascular and Lewy Body) are forms that are not as well known. Our job as providers is to educate primary care providers of the important role they play in screening aging individuals and referring them to neuropsychologists and neurologists to perform more in-depth testing.
OLIVER: What also concerns me with Lewy that its lack of visibility will lead to less money for research than for example Alzheimer’s or Parkinson’s. Thoughts on that?
DEBOER: You could be right about that, unfortunately. When people think of dementia they usually only think of Alzheimer’s dementia. Honestly, I think this is a failure on the part of our national organizations (e.g., Alzheimer’s Association) to properly educate and promote awareness of the other (equally prominent) forms of dementia.
OLIVER: Any thoughts on what the causes of the various types of dementa are?
DENBOER: There are as many different causes of dementia as there are types. Each type of dementia has its own distinct etiology. The commonality across them all is the degeneration (i.e., shrinkage) of the brain. New and novel learning can help mitigate this decline (www.brainuonline.com).
OLIVER: What should people do first if they suspect that they or a loved one may have dementia?
DENBOER: The key is to recognize this as early as possible, prior to when they have dementia or mild cognitive impairment. MCI develops 5-7 years earlier, prior to the first beginnings of dementia. By the time people have noticeable symptoms of dementia the mitigative possibilities of the disease are greatly reduced. Typically, we can slow the decline associated with the disease if people are in Stage 2 or less. If people suspect that they themselves or a loved one may have dementia my suggestion would be to present to a neuropsychologist right away. Typically, the visit is covered by Medicare/insurance. They will undergo a 2-4 hour evaluation which will assess memory, attention/concentration, etc.. The neuropsychologist will tell you whether there is a suspicion of mild cognitive impairment or dementia. If there is, a visit to a geriatric neurologist is warranted; an MRI of the brain may be needed. All of this information will be used to make a diagnosis of MCI or dementia.A simple explanation of Lewy body:
Dr John DenBoer is a US-based dementia researcher and the creator of Smart Brain Aging (http://www.smartbrainaging.com/) – a company that helps delay the onset of dementia and reduce its severity, through a science-backed brain training program. Dr DenBoer was inspired to become an expert in the field after his grandmother was diagnosed. See www.smartbrainaging.com for more information. 
Be careful little eyes what you see, be careful little ears what you hear — Sunday school song based on Bible passage in Luke
As a lifelong journalist, I’m all about information. Open records open meetings. Free speech. I say no secrets is the best way to run a government and, for the most part, your personal life.
But also in my experience as a journalist in Alabama, Florida and California I’ve seen burnout.
I learned to protect myself but you can’t always. I didn’t want to see the crime scene photos of Chauncy Bailey, a journalist and colleague in Oakland Calif. but after I pushed the photos away I snuck a glance. He was shot in the face with a shotgun.
I cannot unsee that.
Covering the cop beat in Birmingham years earlier a similar thing occurred when a police detective said “Hey this is what we were working on. He threw the envelope with photos of the crime scene. They watched me pull out a 70-something-year-old woman who was stabbed more than a dozen times. I passed the hazing of a cub cop reporter by not throwing up.
So I learned to avert my eyes and steel myself: When a decomposing body of a heatwave victim was taken out of her house; when a female murder victim was pulled from a quarry; when people broke down and screamed in anguish at funerals of children; when a man cried showing me the spot where he found his dying brother, carried by a tornado 100 yards from his house.
When I was offered to cover an execution while working at the Orlando Sentinel, I declined. When a woman threatened to jump off the Oakland Tribune building in a suicide, I chose not to watch as the street filled with onloookers.
But I heard the the eerie simultaneous gasp of the crowd below when she hit the pavement. I can’t unhear that.
I guess i am hoping to give you a strategy, however ineffectual, and as a warning, however meaningful it may be.
I am three years into a diagnosis of Lewy body dementia. The average lifespan after diagnosis is 4 to 8 years.
I am scared. I am sad. I am angry. I am resigned. All those things at different times but I’m also practicing my strategies learned in the past.
That doesn’t mean I will stop gathering information about my disease or listening to others’ experiences in memory care centers, in support groups and in YouTube videos.
On YouTube I watched John and Dawn’s achingly beautiful video. It shows what will likely happen to me. I doubt I will watch it again, because that would be too much. I’m linking it here but don’t watch if you are not up for it right now. Self protection.
I wanted to do something funny with this post. I was going to propose a Lewy body dementia free day. A day where patients like myself and caretakers like my super strong wife, Catherine, and my daughters Hannah, Emily and Claire could have a daylong respite from encountering, talking, reading, watching anything about dementia..Lewy Free Day.
Maybe the symptoms will go away for a day. Maybe that burning feeling on my neck will go away. That my fingers will return to their past nimbleness. I actually took typing in school and could get 50 to 60 words a minute. Now I find myself hunting and pecking.
What if we had one day a week as Lewy Free Day.
We all know that’s a pipe dream. But we can choose a day –i’ll say Monday — to mindfully focus on what is positive in our lives. Watch an uplifting movie, read something not about dementia. Make your favorite dinner or go out. Put off any non-urgent actions related to dementia care or research or talking about new symptoms until the next day.
Don’t even joke about dementia. Finger to lips to anyone who brings it up.
On this day, dementia doesn’t exist.
Lewy Free Day or, to broaden it out, Dementia Free Day. T-shirts could be made:
‘Dementia Free Day’ on the front.
On the back: ‘Don’t forget.’ (or vice versa.)
I’m putting my Dementia Free Day for Monday on my calendar.
