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My life with Lewy, from the inside out

Those of you following my journey on www. myvinylcountdown.com have learned more than needed or ever wanted about 1970s -80s rock music and a relatively anonymous disease that kills you.

Amid the obscure and the famous, amid the 7 stages of Lewy body, amid the stories of basketball and the Beatles, I wanted to write more about where I am today, now.

Whew! That makes me breathe deeply just typing it.

This has been a hard column to write.

[See AL.com version here]

I started it as a journalism story. So, by God, as a relatively healthy 50-something, I was going to research Lewy body and fight it. I learned some key facts: On average you have 4 to 8 years of living after diagnosis. Lot of variables in that calculation so i use it as a guideline –nothing to make plans around. I learned that even though Lewy affected 1.4 million people in the United States, no one much knew about it, even doctors.

I was diagnosed with Parkinson’s in July 2016 and then with Lewy in November of that year. It’s anonymity I think is fair to say hinders a proportionate amount of federal dollars to research it.

I learned that it seems the same kind of protein messing up brains of Lewy body patients were the same messing up those with Parkinson’s DIsease. Symptoms overlapped. Alzheimer’s, on the other hand, plagues the brian with a different kind of plaque. Alzheimer’s does however have some similar symptoms: memory and cognition failure. And evidence of AZ is often found in patients with LPD.

I will say, though I’ve read and heard anecdotally that LBD doesn’t usually have the ‘whiteout’ tendency of Azheimer’s regarding memory. LBD come with days that seem normal only to go dark again. Again my observations and readings suggest LBD patients can be a bit more argumentative and aggressive than Alzheimer’s. Some memory care centers won’t take Lewy patients because of these issues.

There is some good work in the trenches out there. UAB is doing some of it. But the research of Lewy body dementia nationwide is in its infancy, I believe.

I didn’t want a write a big old dissertation about that.

I also hope it doesn’t sound like I’m on my last lap. This is not meant to be a bye-bye column .

It’s not a column about naming names, pondering the future of journalism, or Mike’s best of music reviews and Lewy posts.

I don’t want to die anytime soon, but we know not the hour. And I do want to keep telling you what I know. Something is happening, for sure with me. From the inside out.

The difference between now and, say, two years ago, is an accumulation of small things, subtle things. Remembering where I set something down sets me off on a 20-minute search. Trying to remember which button or combination of buttons to push leaves me staring at my computer — or the wall — for a zombie moment. A momentary loss of balance. Or, falling.

Standing up quickly can lead to dizziness, shakiness and losing consciousness. I feel down the stairs the other day after passing out. Luckily it was a four or five stair roll leaving me with a relatively moderate gash on my knee.

The condition is caused by low blood pressure. When we sit, our blood pools to the butt and thighs. Normally when we stand up that blood pressure has beat us to the brain and is lathering it in blood for oxygen.

It’s the real deal. Because falling is one of the biggest LBD -related cause of deaths. Choking is another, as your autonomic system is under attack.

Your autonomic system is like a perpetual cruise control allowing you to breathe, pump blood, even salivate ‘automatically.’

I’ve written a lot of columns and spoken to a lot of groups about Living with Lewy.

The reaction I get is many have never heard of the disease, which attacks the brain bit by bit. Like an appetizer for Hannibal Lector.

Most haven’ heard of it. This despite it being the second largest type of progressive dementia after Alzheimer’s Disease.

My pain is classic angst. Will my (children) be OK? How will my truly beloved wife be able to live without me? Will she know what the ebay password is?

I ‘m now having doubts about finishing this project –myvinylcountdown.com. Four years and I still have more than a hundred album reviews yet to finish it.

I realize how dumb and strange this blog must look sometimes writing a post about Stephen Hawking’s view of the afterlife followed by a review of Bobby Sherman singing Julie Julie Julie do ya love me.

But there has been signficant change. It was actually likely a series of micro changes as a couple billion brain cells do battle with unwanted alpha-synuclein proteins.

Spoiler alert: The proteins win.

But as I said. Changes accumulated. My memory worsened, although thank God I’m still, for the most part remembering most of those with a role in my life.

I had some episodes where I’d break from reality. Nothing serious (sometimes reality is overrated). I usually could locate the logical rational piece of my brain and somehow steer it back to clear water. I developed a healthy case of Orthostatic hypotension, a form of low blood pressure.

I’ve learned tostand very closely and wait for a wave dizziness or near unconsciousness. blow by.

See, I was going to give many tips like this. But the brain cells that held them got eaten. By bye list.

So back to the bigger noticeable change. Different patients have different experiences. Our endings will be different. I pray for a peaceful death for those with the disease. For me? I’m bargaining for time. I’m bargaining for time so I may be with family members and friends longer. I’ve been rewinding my life for the past few years, remembering wild and crazy times with wild and crazy people and laughter and the roar of the ocean and sitting around campfires. And being scared sometimes; and worrying too much; and hurting people. I said I’m not going to make this a regrets column.

We’ve been beating ourselves up for those for too long anyway.

Couple of years ago I wrote a column called “Rub your dog between the ears while you still can.”

Gus, the family’s 14-year-old mixed poodle, is sitting right here as I write.

I’m rubbing his ears. And rubbing my eyes.

Oliver is a columnist from AL.com who writes often about Lewy body dementia. He also loves vinyl records and uses his blog to list them and write about them. He has finished more than 500 platters (haven’t used that word for records in a while.) He is racing against time to finish those before he dies. Stay tuned.

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Checking the boxes on Lewy body dementia

I feel a kinship with the Lewy Body Dementia Association staffers. I’ve written for their website. I’ve laughed with them, shot hoops with them, gone to Vegas (Lewy conference) with them, worked with them to raise money for research and awareness.

They’ve been good folks. Now they’ve come out with a checklist that is giving me a headache.

But it’s not their fault.

The LBDA checklist is good. But probably because I have Lewy body dementia and I am trying to cover same dementia. Things get complicated. With a Lewy on your back.

So the source of my headache? I decided to fill in the boxes on the 2-page list of symptoms. Do I shuffle when I walk? Yes. Not all the time though. Do I have a weak voice? Yes. Sometimes. Do I have hallucinations? Yes, but rarely. Does my handwriting/typing suffer or change. Yes but well controlled with medication.

And on and on with the symptoms with me checking about 90 percent of the 40 or so boxes but I was left with a desire to add more context beyond checking a box.

LBDA recommends that you take it to the doctor where you could then give context to each of these two dozen or so symptoms. Again great idea. But by then you may have forgotten the nuances . For example, do I drool? Depends on what’s cooking, no, sorry couldn’t resist. Real answer, rarely.

So, anyway, my headache came on when I saw that i was checking nearly every box and appeared near death. When in reality, I feel OK much of the time. I am definitely not criticizing this great idea but i have one slight suggestion to make it more useful.

It’s easy as 1-2-3.

Below is a partial piece of the checklist which I have quickly filled in with my 1-2-3 grading system.

The 1 means frequently; the 2 means occasionally and 3 means seldomly or rarely. Leave blank if never.

And that’s it. I think I may try it at my next doctor’s visit and report back.

I just realized that I am glad I cut the list off where I did lest I share to the world my grading on constipation, delusions and sexual dysfunction.

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Another look at words on AL.com

Mike Oliver is an opinion columnist who has Lewy body dementia. For this column, he culls posts from his blog where he is counting down his 678 vinyl records to raise awareness of this deadly, common, but not well known form of dementia.

Singer songwriter Peter Himmelman has a song about visiting a woman named Susan in the hospital. It becomes apparent Susan has no use of her muscles and can only talk by using her eyelids to build words on a special computer screen attached by electrodes.

Though not mentioned in the song, ALS was what she had, a degenerative brain disease that became known as Lou Gehrig’s disease after the world watched in the 1930s the baseball great succumb to it.

Himmelman sings about his visit, a moment that had a profound effect on him:

And the words come ticking out and the words bring us together

And the words come ticking out and the words must keep you sane

Susan I owe you an apology

Susan I owe you an apology

For all the days I just let slide right through my hands

You are the woman with the strength of 10,000 men

More click here.

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Daily Summary, May 24, 2019: What is Life Edition

I have a reggae group on my blog called Black Uhuru who sing an anthem called ‘What is Life.’

What is life? I try to see
What is life? It’s unity
What is life? I try to feel
What is life? It’s really real

The term ‘life and death’ issues has almost become trite as a description because it’s tagged to issues that are not about life and death. But I think most will agree that abortion, end-of-life medical care and capital punishment are pretty solid life-death issues.

I’m not exploring all that here but I am leading up to a story by a guest writer to AL.com that is another example of why there are not black-and-white answers to all the questions about these topics.

The story excerpted and linked below is about a man, burned badly over 65 percent of his body. He wanted to die.

His case is now a case study in bioethics classes at UAB. Many thanks to Gregory Pence for sharing this remarkable and well-written piece, which opens like this:

Famous patient in bioethics, Donald (Dax”) Cowart, recently died. A high school football player from Henderson, Texas, he served as a pilot in Vietnam, after which he joined his father in real estate in Henderson.

On June 23, 1973, the two of them, while inspecting a ranch for sale, suffered severe burns from an undetected gas leak, burning over 65% of Dax’s body and killing his father.

Dax had learned about burns from his pilot’s training. Found by a farmer, Dax asked for a gun to kill himself. 

Read the rest by clicking here.

It’s an issue I want to explore further at another time because those of us with dementia may face instances of chronic pain and lowered quality of living.

Pence’s column really leaves you wondering. I’m still not sure what the takeaway is in this column and that’s what makes it so provocative. It’s not a same-size-fits-all lesson here.

That’s all for now. Check out my column tomorrow on AL.com: It’s about MyVinyCountdown.com reaching the half-way point.

And, importantly, let’s remember our veterans who have died.

1:18 p.m. Update:

Another story has come through that is related to this topic: Conservative Christian anti-abortion mother of two children with special medical needs sees the nuance and strongly opposes the new law banning abortions. Story here.

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8 questions for dementia doctor whose documentary starts next week on Netflix.

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. 


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Dementia Free Day: How too much information can be bad (blog version)

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.

Otherwise I’ll forget.

For AL.com version go here.

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The Seven Stages of Lewy Body Dementia

I am excited to have found a new LBD resource. Unfortunately my finding led to another finding that I am probably a Stage 4 Lewy patient on a 7-part scale.

My new resource is Norma Loeb, and she runs the Lewy Body Dementia Resource Center.

She contacted me recently after hearing the K-Pod podcast where I was interviewed by Kerri Kasem, daughter of Top-40 radio personality Casey Kasem who they believe died of LBD.

So glad she contacted me because the first thing I noticed going to her website was a post listing the seven stages of Lewy body. I have heard people talk of different stages. but I don’t believe I knew there were seven and I haven’t seen anything breaking that down in simple language like this.

I would classify myself in Stage 3 at best, but most probably Stage 4 based on this scale. Yikes. Although I believe I was diagnosed early. It has been nearly three years and it appears I am moving up (down?) the scale rather quickly. Makes it a little more serious when I put it like that.

I need to stretch my stages out a little longer, I think.

Without further ado, here is Norma Loeb’s post:

Dementia is a disease that affects millions of Americans. There are several types of dementia that we know of, including Alzheimer’s Disease and Lewy Body Dementia.

While forms of dementia vary in symptoms and severity, the Global Deterioration Scale aids in identifying the typical progression.

If you or someone you know may be in the early stages of dementia, here’s what you need to know about its seven stages:

STAGE ONE: NO COGNITIVE DECLINE

Stage one is entirely undetectable to the patient, loved ones, and physicians. At this stage, individuals do not experience or present with any cognitive decline.

STAGE TWO: VERY MILD COGNITIVE DECLINE

Stage two may bring subtle changes in the individual, such as mild forgetfulness. These instances may include forgetting names or having trouble locating familiar objects. In the second stage of dementia, it’s difficult or impossible to notice these minor symptoms, and a diagnosis is not yet able to be reached.

STAGE THREE: MILD COGNITIVE DECLINE

Stage three involves mild cognitive decline. The symptoms may become more noticeable to loved ones of the individual in stage three dementia, and a diagnosis may be near. This stage often includes mild memory loss, out of character forgetfulness, and a slightly decreased ability to concentrate.

STAGE FOUR: MODERATE COGNITIVE DECLINE

Many people living with dementia are officially diagnosed during stage four, which is when physicians are able to pinpoint cognitive decline with an exam. At this point, the patient will likely present symptoms such as life-disrupting forgetfulness and out-of-character difficulty performing daily responsibilities. It may become more challenging for those with stage four dementia to manage finances or navigate to new locations.

STAGE FIVE: MODERATELY SEVERE COGNITIVE DECLINE

Stage five is marked by moderately severe cognitive decline. Individuals in this stage often have notable memory loss and begin to struggle with daily activities. Significant details such as address or phone number may be difficult to recall, and those with stage five dementia will likely need assistance with tasks such as meal preparation and bathing.

STAGE SIX: SEVERE COGNITIVE DECLINE

Individuals in stage six need a high level of support to live comfortably. Memory loss tends to be significant, and many in stage six dementia are only able to recall memories of early life. Incontinence is common in this stage, and many patients also begin to lose their ability to speak. A change in personality may occur during this time period, which lasts an average of 2.5 years.

STAGE SEVEN: VERY SEVERE COGNITIVE DECLINE

Stage seven typically lasts for 1.5 to 2.5 years and is characterized by very severe cognitive decline. Patients in stage seven lose their ability to communicate, and are often unable to walk. Individuals in late stage dementia require extensive assistance with life’s activities, and often need round the clock support.

Dementia affects approximately 5 million Americans each year. Lewy Body Dementia (LBD) comprises approximately 1.4 million cases within this figure, and is often misdiagnosed. If you’d like to learn more about Lewy Body Dementia or seek support, please visit us online at lewybodyresourcecenter.org or reach out to our helpline at 516-218-2026.

My Vinyl Countdown post today in AL.com

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Thoughts on how to beat a fatal disease (blog version)

This is an opinion column from Mike Oliver, who was diagnosed  with the fatal  Lewy body dementia more than two years ago.

Acceptance of a fatal disease diagnosis is the first step.

Listen up brain. I’m talking to you.

That doesn’t mean you are not angry about it. That doesn’t mean you are not sad about it. And that doesn’t mean accepting everything the doctor says. Do research.. Ask questions. I’m not saying give up hope – for a cure, for a milder case, for, yes, even a miracle.

But be realistic.

 To avoid despair – and that’s a weighty word for giving up – you need to come clean with yourself primarily, and, then, others as you begin to become comfortable talking about  it.

I knew a person with a fatal cancer diagnosis who refused to talk about her cancer. Her friends and children eventually knew she was sick but had little to no time to prepare for her death. When she died her school-age children did not know death was even a possibility. Her death was a hard blow to handle without preparation, a sucker punch with long lasting effects.

Talking about my fatal disease, even joking about it has been my way of making this horrible thing bearable. I also talk to my brain.

Now this might sound silly but try it: Stand in front of a  mirror and say “I know I have Lewy body dementia (or Alzheimer’s, or Parkinson’s, or cancer, or whatever it is).

“I know you may kill me before I want to die,” I say to my reflection, talking to my brain. “But I will fight you. I will not go gently — until I can do that on my terms.”

Still standing before the mirror I say: “Lewy, I will resist your memory damaging brain attack. I hereby give you, my brain, permission to summon whatever resources you have to fight back to slow the proteins down.

“Step up brain. You are me. I am you. Together we can beat this.”

 I received an email from a reader that illustrates some of what I am talking. I am printing the email here in whole.

Anne Pinkston in Nashville brought a tear to my eyes with this email.

    —–Original Message—–

    From: Anne Pinkston

    Sent: Thursday, February 14, 2019 10:32 PM

    To: Mike Oliver <MOliver@al.com>

    Subject: Thanks for your articles

    Dear Mike,

    I am guessing you receive more emails than you can read, but still I felt compelled to write.

    I am Anne Pinkston in Nashville.

    My husband Ken, age 76, too has been diagnosed with Lewy Body Dementia with Parkinsonism.    Several months ago, a friend in Birmingham told me about your articles, through which you are chronicling your journey.   That night, I sat up for hours because I could not stop reading your articles.  

    At that time, Ken knew very little about his “diagnosis” and had not been ready to embrace the diagnosis.    I began to read your articles to him at breakfast.  That is how I have exposed him to everything “Lewy”.   Now, he can sometimes even make jokes.  

    Your articles have been a great inspiration for me.   I love your sense of humor and your determination to not be defeated.  I relate to your wife, Catherine.  

    Tonight, I read your article about driving.   My husband had to give up driving in September, and should have sooner.  He has not adjusted yet.  I will read your article to him in the morning, with the hope that it will help him and will make him smile.   

    I believe you and my hubby will both “beat the odds” and live longer and better than expectancy for Lewy Body, so don’t give up.  

    Thank you so much for your articles, your humor and your amazing outlook on life.  You, Catherine, and your girls are to be admired.   I am guessing you have inspired many, many people, as you have inspired me.

    So your friends pledge $$$’s if you dunk.  Well, I pledge $500 to your July Mike Madness B-ball Tournament, whether you dunk or not.  But, I think you and  Dr. J’ Erving could both do it!  Is there a link for 2019 Mike Madness pledges.

    I have been including you and your family in my prayers.

    Keep that “vinyl countdown” going!

    Anne Pinkston

Thanks Anne for making my day! –  Mike

Post Script: Keep your eye on myvinylcountdown.com for information about the charity basketball tournament. We are in early planning stages right now. But I have a feeling this year’s Mike’s Madness is going to be a doozy.

AL.com version with reader comments.

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Kerri Kasem says Lewy body dementia needs more attention

Kerri Kasem and I talked recently about the disease that contributed to the death of her father, world-famous Top 40 disc jockey, Casey Kasem. He died in 2014 of complications of Lewy body disease.

Like myself (and countless others) the elder Kasem was first diagnosed with Parkinson’s. That’s one reason we need much greater awareness of this disease, which affects more than 1.2 million people nationwide, according to the Lewy Body Dementia Association.

Given that we had a similar mission — raising awareness of a little known and little understood brain disease — Kerri, co-host Ashley Marriott, and I talked for a podcast found on her KPOD her podcast website.

That podcast is now live at:

http://thekpod.com/the-kpod-living-with-lewy-body-dementia/

D

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How Am I Feeling? An update.

I was going to name this column Dunking on Dewy.

Or, should the headline be Dunking With Lewy.

I’ve had a slow start since my initial public pronouncement that I will dunk by mid-July when we, presumably, will hold the 3rd Annual Mike’s Madness charity basketball tournament.

I began training to dunk in late October, got some instruction from a personal trainer, then a bunch of stuff happened that ran me off course:  Namely, holiday season, illness  and travel.

Between travelling and eating all sorts of sweets and catching pneumonia , I have compressed my training. I will now wait and start Jan. 2 after the holiday parties, dinners, travel etc. are behind me. I would then, I told myself, go on a comprehensive plan involving changing my diet and lots of exercise targeted at vertical leap improvement.

Then I got sick, bad chest congestion and some fever. Doctor said it was ‘pneumonia’ of the walking variety..

After three weeks, I’m still not 100 percent.’

So, this motivation thing can be tricky. I am somewhat skeptical about whether I will be able to train myself to dunk. But not unsure. It’s a win-win because the single best thing you can do for Lewy body dementia is exercise.

 I am 6-feet tall, about 180 pounds (which is about 15 or so pounds above my playing weight) and have never dunked, although I have played basketball for decades. In my 20’s I was able to touch the rim, almost grab it. Did I mention I am 59?

I know I need to strengthen my body.

Now I also know I’m going to have to do something more difficult and more powerfull: strengthen my mind.

This is an opinion piece written by Mike Oliver who covers life and death issues. Mike was diagnosed less than three years ago with the fatal brain disease Lewy body dementia.