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I’ll make this gripe short

I was reading this nice article online called 10 things your doctor won”t tell you about Parkinson’s disease.

The article opens:

Every year in the United States, about 60,000 people learn they have Parkinson’s disease, according to the American Parkinson Disease Association. The degenerative disorder strikes the central nervous system, impairing movement and balance, among other issues.

If you or a loved one has been recently diagnosed, these 10 things that patients who’ve been living with Parkinson’s for several years wish they’d known at diagnosis — which their doctors didn’t tell them — may make managing the disease easier.h

I found nothing wrong with the advice given. It was what advice they didn’t give.

What about Lewy?

Lewy body dementia, practically a kissing cousin of Parkinson’s. It seems ironic on a post about what doctors aren’t saying that they don’t say what is unsaid about Lewy body dementia. Wheww. That’s a tough sentence to unpack but I’m ranting on a blog so it’s OK.

But seriously, if Lewy body dementia is just the expanded version of Parkinson’s why do we leave it out o f a discussion on Parkinson’s, just like it gets left out of a lot of things.

OK, I’m done. For now.

Here’s an article I wrote earlier about Dementia Research Silos

Still upcoming this week

Dunk/Health update– today or Wednesday

Did he sell his soul to the devil?- Countdown continues with RJ –Thursday

-My Vinyl Countdown column — Saturday morning

The Afterlife — Sunday tentative

Is there such a thing as random? — Some random day next week

PS. Happy Birthday Captain Beefheart January 15, 1941 – December 17, 2010 –(12/17 is my daughter Hannah’s birthday)

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Dementia: Expect the Best

But be prepared for the worst.

Sure, it’s a cliche’. But you know what they say about cliches’ — it became a cliche’ for a reason. The phrase sums up what I’m about to say about dementia.

The hardest thing about living with Lewy body dementia or any fatal disease is the unknown and dealing with that psychologically.

Will my brain damage progress slowly with controllable symptoms until I die peacefully (if that’s a thing) in my sleep?

Or will I shout, scream, accuse my wife of seeing other men or trying to poison me? All stories I’ve heard from caregivers and patients.

Will I be incontinent, impolite, and insulting, one who wanders out the front door and disappears? As Bob Dylan wrote,”No direction home, a complete unknown.” Will I be a heartbreaking shell of the man who was a father, son and husband?

When the word got out through my columns, I began hearing lots of stories. I have heard stories from friends, neighbors, in online support groups, emails from strangers. Some people run down in explicit detail how their loved one was at the end.

“He was in extreme pain,” one person wrote me. Another said she wouldn’t wish the disease on her worst enemy. I’m so sorry Mr. Oliver, another wrote.

I’m try to process this.

Many folks living with dementia or caring for a loved one with Lewy body, Parkinson’s or Alzheimer’s want information. And this is where I see light.

Certainly everybody can decide for themselves how to handle this — until you can’t. I chose to come out in public early with my diagnosis in an effort to raise awareness of this little known form of dementia. But my advice works on a broader scale, I hope.

Learn what you can about the disease, what can happen from best to worst, from living a full, relatively long life to sitting in a nursing home blank faced and unresponsive, not even knowing your daughters’ names as they stand crying before you.

This is serious.

Don’t be afraid to do the research, to name the disease, to listen to people’s stories. But you are not obligated. OK, you might say at some point: I get it. My brain is dying which controls everything I am, my perceptions, my memories, my motor skills.’ That doesn’t sound good. Talk to your friends and loved ones openly and make a plan for the worst.

I was diagnosed at a relatively young age for Lewy body — age 57. Now 59, I have progressed slowly due, in part to medications which were developed for Alzheimer’s and Parkinson’s patients. (That there are no specific drugs developed for Lewy body dementia I see as a sign the disease is flying under the radar, and that’s a key reason I am trying to spread the news and keep up the pressure to find a cure for Lewy body dementia.)

Once you know how bad it can be, you can begin to expect the best.

When I was young I remember my parents had a book called ‘The Power of Positive Thinking,’ a title that kind of made me roll my eyes. But I’m thinking there may be something there.

“Stand up to an obstacle,’ wrote Norman Vincent Peele decades ago. “Just stand up to it, that’s all, and don’t give way under it, and it will finally break. You will break it. Something has to break, and it won’t be you, it will be the obstacle.”

Exercise, treat yourself to healthy but delicious meals, go see something you haven’t seen, write about your life, engage in a community of fellow LBD patients, or just friends, family, faith-based groups.

And I’m no Norm Van Peale but I offer up another suggestion:

Lewy body is in your brain, right?

Have your brain tell Lewy to GTF out.

AL.com version here.

This is an opinion column by Mike Oliver who writes for AL.com about his fatal brain diagnosis and other life issues. See his Living With Lewy Body blog at www.myvinylcountdown.com

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Why not single-payer health care for USA? (blog version)

This is an opinion piece from Mike Oliver who writes about life and health issues for AL.com.

Obamacare is not health care reform. It’s a Band-Aid at best.

You could call it an attempt at insurance reform. And it has helped some people who had no insurance obtain insurance. But who are we kidding? We have more than 28 million uninsured people in this country.  The percentage of uninsured went down at first under Obamacare from about 44 million. But now the rate of uninsured is going up again. 

Last Friday, a federal judge in Texas ruled the Affordable Care Act unconstitutional. And the case could go to the US Supreme Court.

But Medicaid expansion, much of what Obamacare is about,  is not health care reform. Let’s get serious and move the conversation to something substantial.

I want to know what is the case against a single-payer system? I’d really like to know why a single-payer is not legitimately considered an option in this county.

I’m saying this as someone diagnosed at 56 with a fatal brain disease, Lewy body dementia. I’m 58 now, they say the average lifespan for this type of dementia is 4 to7 years or 5 to 8 years after diagnosis.

I’m asking as someone who has covered health care for years as a reporter and editor in Alabama, Florida and California, as one who covered First Lady Hillary Clinton’s health reform attempts as it went down in flames.

I’m looking for real reasons why a single-payer is not the way to go. Just so we are clear, the answer of the above question is not that it is socialistic or socialism. That’s an observation or opinion as to what type of government policy it is.

Medicare might be described as socialistic. The Department of Transportation might be described as socialistic. After all, we collect and re-distribute tax  dollars to build roads and bridges. But we have decided as a nation of some shared needs so government  heads up that multi-billion-dollar endeavor.

But there’s already too much government in our lives I hear opponents of a single-payer system say. I say: We are the government.

So, please, help me understand why it is a bad idea. I go back to Medicare. It, too, is a multi-billion dollar endeavor, making up something like 15 percent of the federal budget. In general Medicare (not to be confused with Medicaid) gets pretty good marks for efficiency. Most folks have seen their parents or grandparents on Medicare, and they haven’t joined the communist party.

In one version of a single-payer, we would open Medicare up to everybody who needs it regardless of age. It seems like this would cost more money initially, and maybe so, but in the long run we will have a healthier, happier nation and less money going to high  percentage  profits of the health care industry.

And that will ultimately mean less spending on health-care. (If only political leaders looked long-term.)

Here’s the Medicare expansion idea. And here are four other models in which variations are used in England, Canada, Germany, France, Spain, etc.

The truth is the United States has universal coverage right now.  That’s right. It’s just that there are  many who use the emergency room as their doctor’s office.  Their unpaid charges get passed on to paying customers, a phenomenon called cost-shifting. So medicines and  treatment rise for the insured patient. Even those with insurance often have high deductibles that deflate the incentive to make a doctor’s appointment.

They get treated one way or another. Others wait to get better but end up getting worse — a cancer that could have been stopped is now too far along, for example.

I was doing a ride-around with an ambulance service in Orlando, FL, years ago and asked the driver about the health care of the people they pick up to take to the hospital.

“Health care for people out here is calling 911 ” was his response.

I think there are two things that help to understand why this is such a sticky and difficult problem.  Typical business economics behind health care don’t operate in the interest of the patients or their outcomes. Think about it. The institutional financial interest is to treat more, test more, scan more, prescribe more. 

Now good doctors may be outraged that I would insinuate their decisions are financially driven. And I believe doctors should have as much freedom as possible to make prognoses and treat patients.

Here’s a case scenario: A hospital on one side of town — Hospital A — buys an expensive laser treatment for brain tumors. It costs many millions but they have the only one in town. They figure they can charge $10,000 per treatment based on how many will use the treatment. On the other side of town, another hospital notices the business that the laser is getting, so they buy one. All good capitalism and competition, right?

The problem is there is a ceiling on the pool of patients. So hospital A starts seeing less patients because Hospital B picked them off. Economically, the overall revenue is down so Hospital A must increase the cost of the treatment or increase the patient population. 

What they need is a good brain tumor epidemic. That’s a horrible thing to enter the psyche of a hospital or health care organization.

The other anomaly about health care reform is that there are huge financial interests which work against significant reform. I covered Hillary Clinton’s  attempt to reform health care. It was not pretty. Too many cooks in the kitchen spoiled the broth, as the thick document that contained the policy was seized upon and ridiculed, probably rightfully so. Throwing an everything-but-the-kitchen-sink document out there was a major mistake, politically. Holding closed sessions with myriad special interests and academic experts was another political mistake.

Many remember the infamous “Harry and Louise” ads, but even more influential in the demise of Hillarycare was former New York Lt. Governor Betsy McCaughey. She wrote “No Exit,” which was published in the New Republic. Although it was a skewed screed with the appearance of an academic critical analysis, it was timely ammunition for Republicans looking to scuttle the plan.

That’s old news now.

Hillarycare like Obamacare was not systemic health care reform anyway. It tried to please everybody from consumer groups to insurers, from hospitals to the pharmaceutical industry. The result: Hillarycare died.

And now Obamacare has been ruled unconstitutional. 

I wonder why we can’t create  some new news without one person’s name on it. Call it Peoplecare.

I would start with a question: 

Why not single-payer health care reform?

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10 tips to remember better (blog version)

What were we talking about again?

I say that sometimes. As someone who has dementia, I am quickly learning what it’s like to forget.

Now where was I?

Oh yes, what we were talking about.  Asking that question is 9 times out of 10 helpful to jog the memory and get the conversation renewed in my experience.

I have Lewy body dementia, the second leading cause of dementia after Alzheimer’s. The disease presents with both memory and other cognitive problems as well as physical complications like tremors.

As people live longer, the number of people with diagnosed dementia is growing. Even if it’s not diagnosed dementia, forgetfulness increases as we age.

Here’s my Top 10 tips to remember better.

  1. Inventory. Before I go to work I take an inventory with my wife and caregiver Catherine. Cell phones? Check. Wallet? Check. Backpack with computer and accessories? Check. Shoes match? Check.
  2. Exercise. Get healthy. Exercise like you never have before. You’ll feel better, look better, and it may help you live longer. Cut back or quit alcohol and sweets and bad carbs in general.
  3. Play back.  Re-trace your steps literally and mentally. For example, if you find yourself in a room and are unsure why you  went there, go back in your mind and retrace your thought process. You can do that while going back to the room you started and see if that jogs your memory.
  4. Push back. Don’t be satisfied with your brain’s feeble attempt to block your memory. In my case, there are clumps of proteins called Lewy bodies after the doctor who discovered them, that are not supposed to be there. I know this sounds strange, but think about your brain. Ask it to improve. Ask your brain to fight back and remove the Lewy bodies. (See earlier piece ‘How to Hang on to a Memory.’)
  5. Writing I have found that I am not reading as much, especially books because I’ll often forget parts and have to go back and re-read. I’ve had  better luck with writing, which is what I do for a living, so that’s good. But just before I wrote that last sentence, I accidentally pushed ‘publish.’  And so now the story is live with only 5 of my 10 tips. The rest  are coming, hold on. <done>
  6. Visualize Recognize the face but can’t remember the name? Visualize when you met. Think back and  see if you can remember where you met and what was said.
  7. Disclose  When  you forget what you are saying or feeling embarrassed about not being able to remember, don’t hide your impairment. Tell folks that you have dementia and struggle with forgetfulness.  If you have Lewy body dementia, please share and explain as it is not well known, and often misdiagnosed. Hiding or trying to pretend your mind is still whip-smart takes too much energy.
  8. Same place. Keep your daily stuff, cell phones. wallets, purses in the same place every time. Where I  get in trouble is putting something down for a ‘second’ to attend to something else.  That ‘second’ expands to an hour or a day with lots of other thoughts and wanderings. Now you don’t remember where you put your cell phone.
  9. Keep cool.  Many years ago our daughters’ had a pre-school teacher who said “Nothing’s ever lost on God’s green earth.” It would settle a panicky kid or that kid’s parents. And it’s true in many ways. I have gone from being frantic to agitated to mellow about losing things. It will be found in time, I say. Stress, anxiety and depression are the enemies of good brain function, not a lost cell phone.
  10.  Doctor. If memory issues dominate your days or more than occasionally disrupt your day, go see a doctor. It may be serious like Alzheimer’s and Lewy body dementia or the memory loss may be normal aging. There are medications created for Alzheimer’s treatment that are used for Lewy body dementia as well.

 

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How can I hang on to a memory?

This is an opinion column by Mike Oliver who writes about his diagnosis of Lewy body dementia and other health and life issues, here on AL.com and his blog.
This morning I had a memory from my childhood.
That, in and of itself, is not particularly newsworthy. But it did make me think how my brain is working.
I have a degenerative brain disease called Lewy body dementia, and I think my experiences can be useful to the medical community and the care-giving community – or anyone interested in what it feels like inside the head of a dementia patient.

Mike and Catherine Oliver help each other remember.

My memory this morning was this:
I was looking at some pants getting for work, realized the pants were — unlike most of my pants – too loose in the waist. The pants would be literally pants on the ground after about five or six steps.
This triggered a memory: it was a sunny day in Auburn, AL,. I was a 5 or 6-year-old kid going out to play on Rudd Avenue (which I don’t think exists anymore. The road’s there, but the name changed for some reason.)
In my memory I am running to get to the creek we used to play in and then we’d likely walk in the creek to Prather’s Lake.
As I run, I realize I‘m having to hold my pants up. With both hands.
I only had two things on like every Auburn boy on my street in the 1960s: Underwear and short pants. And my short pants kept sliding down. Not cool.
Luckily. I had belt loops on my shorts.
My memory only lasted a split second, but it was very visual. I remembered I found a piece of skinny rope. It was only about 5 or 6 inches long. Not enough to go all the way around my waist. So. I couldn’t use it like a regular belt because it was too short.
I guess the idea just spontaneously erupted in my 5 or 6-year-old brain. I tied two front belt loops together with that little rope. Tailor made! The britches held up nice and tight now.
I don’t remember anybody ever teaching me that trick or ‘hack’ as it would be called using current nomenclature. But, indeed, it was a real ‘necessity-is-the-mother-of-invention’ moment.
I think of this, not because there is anything unusual or profound about it.
But it made me stop and wonder why my brain chose to furnish me this quite vivid memory of a past event with no relevance to anything, other than it was triggered by me looking at some pants.
Is it my brain saying: ‘Hey, here’s some info you used before in a separate waist-fitting pants escapade. Here, see if this will help you,’ my brain seems to be saying. Pretty dang complicated for a brain awash in clumps of protein named after Dr.Lewy, who discovered them.
Or maybe it’s a symbolic lesson about how the answer, the cure, is right in front of you, like the piece of twine.
I’ve got my brain sitting here right now — and at all times — inside my head.
What if thinking alone can literally change the brain?
Wonder where that thought came from?
I’ll try it.
-=-=-=-=–=-=-=-=-=-=
Here are five essential facts about Lewy body dementia from the Lewy Body Dementia Association.
  • LBD is a relentlessly progressive disorder affecting thinking, movement, behavior and sleep. On average people with LBD live 5-7 years after diagnosis, though it can progress as quickly as 2 years or as slowly as 20 years.
  • Despite its low public awareness, LBD is not a rare disorder and affects an estimated 1.4 million Americans along with their families and caregivers.
  • People living with LBD and their family caregivers need a high level of support from family members and healthcare professionals from the early stage of the disorder, due to early and unpredictable frequent changes in thinking, attention and alertness, as well as psychiatric symptoms like hallucinations and delusions.
  • LBD is the most misdiagnosed form of dementia. Getting a diagnosis of LBD typically takes 3 or more doctors over 12 to 18 months. The LBDA Research Centers of Excellence network includes 25 preeminent academic centers with expertise in LBD diagnosis and management.
  • Early diagnosis of LBD is extremely important, due to severe sensitivities to certain medications sometimes used in disorders that mimic LBD, such as Alzheimer’s disease and other medical and psychiatric illnesses. An early diagnosis also empowers the person with LBD to review, pursue and fulfill their personal life priorities before the illness progresses too far, review their legal and financial plans, and discuss their care preferences with their physician and family.
  • Contact Mike Oliver at moliver@al.com Also follow his stories, including his quest to dunk at 58 years old on AL.com or myvinylcountdown.com
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Somebody needs to tell Ted Turner his brain disease is fatal (blog version)

This is an opinion column by Mike Oliver, who frequently writes about his own diagnosis of Lewy body dementia and other health, life and death issues.

So who told Ted Turner, CNN magnate, that his newly diagnosed Lewy body dementia is not fatal.

Is he just playing it down?

TedTurner.JPG

Because I’ve got news for him:  It is 100 percent fatal. You get it you die.

Like a  lot of diseases, right? No.

What Ted has, Lewy body dementia, shortens lifespans. Alzheimer’s and Parkinson’s, on average, do not. (Some say Parkinson’s and Alzheimer’s shortens life 2 or fewer years.)

There is no cure for any of these degenerative brain diseases.

Turner, the billionaire TV cable mogul, said in an interview today on CBS This Morning that he has been diagnosed with Lewy body dementia.

“It’s a mild case of what people have as Alzheimer’s. It’s similar to that. But not nearly as bad. Alzheimer’s is fatal,” Turner told Koppel at his 113,000-acre ranch near Bozeman, Montana. “Thank goodness I don’t have that.”

I don’t think Ted fully knows what’s coming. Maybe he does. But it sounds like Turner — like the vast public and, most troubling, the medical community — doesn’t have a clue about what he has.

The fact is that Lewy body dementia is not a form of Alzheimer’s disease and, not that a debate over ‘severity’ of the diseases accomplishes much, Lewy’s damaging symptoms can be equal to or worse than AD, if that’s even possible. Both kill the brain eventually and every step of the way you lose a little more control.

Turner said something else that goes to the heart of my mission:

“But, I also have got, let’s – the one that’s – I can’t remember the name of it.” (Bold emphasis mine.)

(MORE ABOUT THE UNDERDIAGNOSED DISEASE: LEWY LEWY, CALL IT BY ITS NAME)

Turner said, “Dementia. I can’t remember what my disease is.”

Too often patients don’t know what they got, some doctors know little about it.

I seek to raise awareness of this disease. I have — with generous help from the community — conducted two basketball tournament fund-raisers for Lewy body research at the University of Alabama at Birmingham. I have written quite a bit about it for my blog and AL.com. Go to my website and click on the Lewy Dementia button for some of my writing.

Come join me Mr. Turner.

Robin Williams had Lewy body dementia, and it was undiagnosed. He thought he was  going crazy. The suicide I believe could have been prevented. The knowledge itself would have helped reduce anxiety. And with treatment targeted to Lewy body, not Alzheimer’s, not Parkinson’s, he might have had some good time left.

In the interview aired today, Turner said something that puts a point on what has become a mission of mine: Raise awareness for Lewy body. I write this right now on my laptop slowly in the hunt-and-peck mode because my right hand can’t type. Lewy body can present with Parkinsonian symptoms on top of the cognition issues.

Lewy body disease (LBD) is a umbrella term which covers Lewy body dementia, which I have. It’s been two years since I was diagnosed. I guess you would say I am in early stages and still highly functional.

But Lewy isn’t going anywhere.

Lewy body dementia will kill you on average 5 to 8 years after diagnosis. There are several sources for this including Mayo Clinic (other sources say  4 to 7 years or 5 to 7 years.)

Lewy body disease presents symptoms that include impaired cognition, and the kind of  tremors associated with Parkinson’s.

Lewy body dementia has changed my world.

MikeMadness T-shirts.jpgTrisha Powell Crain

You have a choice to get interested in what may kill you prematurely and do what I’m doing: Spreading the word. I’m a columnist for an AL.com and write about Lewy body dementia frequently here and on my music blog:  www.myvinylcountdown.com

I have never heard anyone describe Lewy body as being milder than Alzheimer’s. They are two different things and affect everybody differently. But Alzheimer’s and Parkinson’s patients have less of a reduction in lifespan than Lewy body dementia patients.

Mayo Clinic says this:” Lewy body dementia, also known as dementia with Lewy bodies, is the second most common type of progressive dementia after Alzheimer’s disease dementia. Protein deposits, called Lewy bodies, develop in nerve cells in the brain regions involved in thinking, memory and movement (motor control).”

Let’s find a cure.

Reach me at moliver@al.com and see my blog at www.myvinylcountdown.com

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People with dementia, chronic diseases and their doctors benefit from ‘progress report’

 

 

 

 

 

 

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.

{To see full report click here and scroll down}

 

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 click here.

 

 

 

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See the 10 questions used to diagnose Lewy body dementia

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

 

© Copyright 2013 The Lewy Body Composite Risk Score James E. Galvin and New York University Langone Medical Center

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

See also: It’s not like we are forgetting Alzheimer Disease

 

 

 

 

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How am I doing? Come, as we enter the Twilight Zone (BLOG VERSION)

How am I?

For an update I offer up Henry Bemis. He was the put-upon, bespectacled  bank clerk who accidentally locked himself in a bank vault. While inside, a nuclear war destroyed the world and  apparently all the people in it.

Except for Bemis.

Bemis was  in the Twilight Zone.

Henry Bemis

Bear with me if you know this 1959 black-and-white classic TV episode. I ‘m going to go over the story which has many levels and layers.

After all, we are talking about “a dimension as vast as space and as timeless as infinity,” Rod Serling sedately states. “It is the middle ground between light and shadow, between science and superstition.”

I’ve been there as a person living with Lewy body dementia. Between science and superstition. Shadows and light.

Before being locked in a vault  and before the bombs and before the endless stacks of  books, Bemis was a man who viewed the world as encroaching upon his precious time. Time to read the books he loved.

At home, his wife Helen Bemis put constant demands on him, wouldn’t even let him read  the  newspaper, for goodness sakes.

At work, his boss, Mr. Carsvile, also demeaned and belittled  him.  One day Bemis steals away to the bank vault to catch some valuable reading time, out of view of the boss.

Reading takes time. Do people read  like they used to? I’d say per word consumption has gone up but it’s consumed like a patient with attention deficit disorder.

I know I battle with my disease over my attention span.

I believe the reading public feels, like me, ADD-addled.

Technology pushes 300 channels through a skinny cable from pole to house, every house. The torrent of bits and bytes pours into laptops and phones held in the hands of billions. 24/7.

Bemis had his book and sturdy hiding place. Secured in the vault, Bemis was disoriented after the bombs did their work, the blasts blew the vault door open.

Bemis wanders out through the rubble, even contemplates suicide all the way to the point of putting a gun to his head. Then he sees. Hundreds upon hundreds of books lie in piles outside, blast-blown from a library. Bemis can hardly believe his eyes.  What’s bad for everybody, death by incineration, turns out to be good for Bemis. As screwed up as that is, it makes some sense as we watch.

He grins broadly at his good fortune.

“And the very best thing  of all is there is time now,” he says, picking up a large clock, amid the  books strewn about. “There is all the time I need and all the time I want. Time. Time. Time. There is time enough at last.”

A reader commented on one of my recent articles  involving oddball random sayings  about  life and death. The reader posted this offering: “Life sucks and then it ends.”

Cynical, yes, but enough of a truism to resonate with a lot of people. Bemis’ life did suck. It was mundane and tedious, always spent wanting more time to do the thing  he loves, too scared to take control of his life.

Then the bomb.

<GO HERE FOR FULL STORY>

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Robin Williams’ birthday is on the same day as MikeMadness Lewy body event

This is an opinion column by AL.com’s Mike Oliver. See another version of this AL.com.

All this time I never noticed the ‘coincidence’ about the date. The MikeMadness charity basketball tournament date on July 21.  We picked it because it was approximately the same Saturday date in mid-July as last year’s tournament to raise money and awareness for Lewy body dementia – which I have.

I never knew it was also Robin Williams birthday. Until yesterday.

The birthday is an interesting coincidence, because Williams’s wife blamed un-diagnosed Lewy body dementia for his suicide.

When was that? His death date, I wondered.

It was on Aug. 11, 2014, Robin died.

My autonomic system came to life, a tingle, goosebumps.

On  Aug. 11 (2016) was the first time I was diagnosed with a degenerative brain disease. It was a Parkinson’s diagnosis, later switched to its lesser known cousin, Lewy.

Coincidences? How many coincidences do you have to have before they are not coincidences?

Some folks,  including my wife, the Rev. Catherine Oliver, associate pastor of First Presbyterian Church Birmingham, say that they don’t believe in coincidences.

So what does that leave us with? God? Messages from the universe? Robin Williams?

Albert Einstein said: “A coincidence is a small miracle when God chooses to remain anonymous.”

Writer Simon Van Boov said: “Coincidences mean you’re on the right path.”

But that leads you  to the question why is God leaving breadcrumbs, parceling out hints like we are all playing a Milton Bradley board game?

Some may be thinking right now, that a couple of dates lining up with Robin Williams and me and our tournament isn’t off the charts coincidental.

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But let’s put it in context with other coincidences surrounding my disease.

The Numbers

If you all remember I’ve had other strange connections. One involved the famous scientific nun study which studied dementia in hundreds of nuns over their lifetimes.

One of the promising things about the study and the one I wrote about was that some nuns, upon autopsy, had Alzheimer’s, the leading type of dementia. But a small subset of those whose brains showed the ravages of Alzheimer’s did not present symptoms while they were living. This suggested there may be a self-made work-around that the brain is using in some cases. I wrote a story.

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Months went by and I picked up a New York Times story on study again and started reading. Then saw the number. It said the study consisted of 678 nun participants.

What? That’s the exact number of albums I am reviewing. I did the counting myself right before I started my MyVinylCountdown.com blog last year. Now that kind of blew me away, I always start thinking about what are the odds of those two random things being the same number? A lottery-like long shot, you would think?

Some say either nothing is a coincidence or everything is a coincidence. Perhaps a coincidence is just an event that has much lower odds of occurring than something else.

So maybe it’s all about the odds. The numbers. After all, conception itself is a game of odds. Life is a game of  odds – which trees get the best sunlight, which rabbits are the fastest.

nun snip.JPGNYT story, circle is mine moliver@al.com

M.I.T.. professor Max Tegmark, author of our Mathematical Universe said in Scientific American that our universe isn’t just described by math, but that “it is math in the sense that we’re all parts of a giant mathematical object.”

Tegmark recalls Douglas Adams spoof  “The Hitchhiker’s Guide to the Galaxy” that the answer to the ultimate question qbout existence and the creation of  the universe is 42.

That’s a little physics humor there.

 

 Who Am I

This next coincidence that has occurred regarding me and my disease seems like you could figure some odds on. But this one shook me more than the others because it was very palpable. It was a weekend day and I set out to do a little cleaning of my room, vacuum, dust, pick up clothes etc. I brought my IPod player and put it in a stand because music is my work partner. I put the whole 120G IPod (the Classic model) on random play. There were 7,500 songs being shuffled.

At one point while I was cleaning, I got inspiration for a blog post, basically about existence, who we are in the world.  Are we our brains? (A good question from one whose brain is under attack.) The title would be ‘Who Am I.

louie.jpegMike Oliver | moliver@al.com

I ran downstairs and began typing away on my laptop. I don’t know how much time went by — but more than an hour. I came back upstairs, walked into my room where the music was still playing on random play. It took me a while to process this one.

The Who were on my IPod playing “Who Are You’ — you know the song with the recurring chorus that goes ‘who are you? who who, who who’? This  is an IPod that could play 20 days straight 24 hours a day, theoretically, never playing the same song from the 7,500.

I actually felt afraid for a minute, wondering if someone else was in the house pranking me? But how would they know what I was writing?

Coincidence?

Lastly, as I was thinking last night of writing about all this, I was casually running through some records. . On one shelf there was a big box set of some classical music. It was covered up with albums so I knew it hadn’t been pulled off the shelf in a while. I picked the box up and underneath it was sheet music with words and notes and cords for a song.

The song? “Louie  Louie” by the Kingsmen.

When I saw it, I remembered I had seen it before like 10 or 20 years ago.. I had forgotten about it. And I have no idea why we even had it in the first place as nobody in our house really plays music and that  frat boy Animal House anthem from the 60s would be an unlikely choice for anyone.

Coincidence? I don’t know so.

Mike Oliver writes on many topics but often about Lewy body dementia. See his blog at www.myvinylcountdown.com  See how you can help by going to www.mikemadness.org . Happy Birthday Robin.