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Peter Himmelman sends My Vinyl Countdown excellent, hard-to-find vinyl

Peter Himmelman, a Minnesota-born, California-based, singer-songwriter, rock star of cult-level status and observant Orthodox Jew, sent me three vinyl records recently in support of my effort to get the word out about a prevalent but little-known brain disease.

Woo hoo! I was so excited to rip open that box and play some new Himmelman music, which I find to be of the highest order.

Himmelman like a few of my favorite artists had not, heretofore, to my knowledge, put out LPs. Now that I have this vinyl, I can add him to the countdown. (In another post I will review his three albums.)

So how did this come about that a semi-famous rock star, Bob Dylan’s son-in-law, send me three excellent out-of- print vinyl records? Therein lies the story, a story about this singer, this journalist and my wife, Catherine, a Presbyterian minister.

FOR THE FULL STORY, PLEASE CLICK THIS

Himmelman’s ‘The Boat that Carries Us’ album cover.
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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.