I got a column coming up this weekend that is too long but it’s early. As Mark Twain wrote ‘Sorry this letter was so long. I would have made it shorter if I had more time.’ NOTE: From memory, not exact quote.
So, what I’m writing about is my disappointment that there is not more awareness of Lewy body dementia. The old sore spot was resurrected last week when I received an 82-page, 16,077 word report on Alzheimer’s research. One of those 16K words was Lewy. One!
Again everything, money, publicity, public awareness is focused on Alzheimer’s. We’re going to change that.
Look for it on AL.com Saturday. Even though I went ahead and wrote it too long. Ranted too long. so like my old buddies Archie Bell and his buddies the Drells used to say: Tighten Up.
Here are some records I’m pulling out. I’ll probably put up for sale my A through D’s or E’s, about 150 albums or so. (You can see a list just by scrolling my blog starting from the A’s.)
I was invited to speak this morning at an Alzheimer’s lecture series in Birmingham sponsored by the Alzheimer’s Foundation of America. It went well.
I was pleased to be invited but I didn’t want to ‘lecture’ in the negative meaning of that word. I told my story of diagnosis. I talked about my decision to ‘come out’ in my early stages and told them I believe I can be an advocate as a writer describing what I am going through for as long as my illness allows me .
I also touched on the lack of awareness people have on the subject of Lewy body dementia.
Well, I believe I heard them say that they would help promote MikeMadness. That’s a great start. We may be different diseases but we are all one brain. (Um I think I should work on that phrase a little.)
Still room for more teams in the hoops tournament for Lewy bod dementia awareness and research. See www.mikemadness.org
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?
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.)
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.
Trisha 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
Great news breaking a few days ago from AARP — you know the’old folks’ lobbying group.
I have forgiven them a long time ago for inviting me to join them when I was 50. Now at 58 and a card-carrying member, I have a new beef with the group.
And it comes out of the praiseworthy announcement headlined online like this:
“This move reflects our ongoing commitment to people with dementia and family caregivers”, wrote Jo Ann Jenkins, CEO of AARP.
Later she writes:
More than 6 million people in the United States suffer from various types of dementia, including Alzheimer’s disease, and those numbers are growing at an alarming rate. Based on current projections, by 2050 that number will exceed 16 million, or about 1 in 5 Americans age 65 and older.
My beef?
She never mentions anywhere in the article the name of the 2nd leading form of dementia after Alzheimer’s: Lewy body dementia.
I wish I could say I was surprised. But Lewy body is the disease with no name it seems. Name it. Lewy Lewy.
Lewy Bodies in the brain.
I was diagnosed about two years ago. They say the average lifespan is about 4 to 7 years, (some stats say 8 years) after diagnosis. Of course there are many exceptions. The Lewy joke is if you know one Lewy patient, you know one Lewy patient.
I have been trying to raise awareness of this disease ever since I was diagnosed. It’s important, I believe not to lump all dementia cases together. Lewy may have similar symptoms as Alzheimer’s but it’s a totally different malfunction in the brain. Lewy body’s brain malfunction more closely resembles Parkinson’s disease.
Many primary care doctors, based on the anecdotal evidence I have received from readers, are not familiar with Lewy body dementia. Patients don’t know to ask about it. Yet I continue to see its name omitted in stories about dementia. Say its name: Lewy Lewy.
Some in the medical field call it a disease that’s on a spectrum with Parkinson’s, and that seems possibly is true. But if we’re lumping all research under the nomenclature ‘Parkinson’s’ or Alzheimer’s we may never discover, much less cure, a separate disorder called Lewy body dementia.
Say its name. Lewy Lewy.
It’s kind of like now we are building Spacehip Research to launch into space with no destination beyond planets Alzheimer’s and Parkinson’s. Hey what is that planet we just passed? Not Pluto, it’s Lewy Lewy.
I have a blog where I count down my vinyl records to raise awareness; In addition to lots of music reviews, it has lots of stories about my experience with the disease. It’s called www.myvinylcountdown.com,
At my website hit the ABOUT ME button for more, er, about me.
Read about the AARP money by hitting the headline with the big letters at the beginning of this column.
Last year a fund-raising basketball tournament in my name raised $13,000 for the Lewy Body Dementia Association.
This year we have the 2nd Annual Mike Madness basketball tournament. Sign up to play. Or just come to watch on July 21 at UAB Recreation Center. Hurry sign up to play is July 15.
If you can’t come, please consider a donation. This year, in addition to LBDA, we are giving to UAB for Lewy body research. We are much excited about that.
So if you’re walking down the street sometime And spot some hollow ancient eyes Please don’t just pass ’em by and stare As if you didn’t care, say, “Hello in there, hello”
John Prine
Staying on topic again. Lewy body dementia. Quick quiz.
I’ll answer for you.
Do you forget things, names for example? Um, sometimes.
Are you constipated? Um, sometimes.
Do you have muscle and joint stiffness? Um, sometimes.
Do you have vivid dreams? Well the other night I had some jalapenos on my nachos and man I was dreaming of …..oh, so? um sometimes.
Do you see things out of the corner of your eye, turn to look and it’s gone? Um, sometimes but that’s because I have floaters in my eyes.
Do you have Lewy body dementia? I dunno. What’s Lewy body dementia?
I’ve gone over these angles before but I recently read a research paper published in 2015 that generally backs up much of what I’ve been saying. But it does so in other words, which I found helpful.
I was (mis)diagnosed with Parkinson’s disease first in 2016 and then diagnosed with what we are pretty certain is Lewy body dementia a few months later. What was frustrating as a newcomer to these diseases, is how little absolute knowledge there was because everybody is different, brains are extraordinarily complex and what the hell are all these alpha-synuclein proteins really doing in my brain?
Lewy Bodies in the brain. Public domain Wiki.
The research I was reading was posted on the Bio-Med Central website and authored by Brendon P. Boot of Alzheimer’s Research and Therapy.
Boot said while Lewy body has been pegged at being about 4 percent of all dementia patients, the figure is actually much higher.
“Dementia with Lewy bodies is an under-recognized disease; it is responsible for up to 20 percent of all dementia cases,” wrote Boot. “Accurate diagnosis is essential because the management of dementia with Lewy bodies is more complex than many neurodegenerative diseases. This is because alpha-synuclein, the pathological protein responsible for dementia with Lewy bodies (and Parkinson’s disease), produces symptoms in multiple domains.”
This is great stuff. This is why I have been harping about why the medical community needs know about Lewy, what it is and how to monitor. When a 58-year-old constipated man, who ate recently at Pete’s Nachos and who keeps seeing little bugs scurry across the floor comes into your office, let’s assess for Lewy body, as well as Parkinson’s and Alzheimer’s.
Let’s keep going.
“By dividing the symptoms into cognitive, neuropsychiatric, movement, autonomic, and sleep categories, a comprehensive treatment strategy can be achieved.”
Yes!
“Management decisions are complex, since the treatment of one set of symptoms can cause complications in other symptom domains. Nevertheless, a comprehensive treatment program can greatly improve the patient’s quality of life, but does not alter the progression of disease,” wrote Boot.
That’s what I’m talking about.
Let’s continue.
“Dementia with Lewy bodies is an under-recognized disease. The diagnostic criteria have low sensitivity (12 to 32 %) and high specificity (>95 %) [1], so many cases are not diagnosed,” Boot wrote.
So many cases are not diagnosed. Did you understand the explanation in the that sentence? The thing about the criteria having low sensitivity and high specificity?
Me neither.
Onward.
“Parkinson’s disease dementia (PDD) accounts for a further 3 to 5 percent of dementia cases .”
That’s on top of that 20 percent. (But of what? Need to find total number of dementia patients to put 20 plus 5 percent in context.”)
“Both DLB and PDD are due to the pathological accumulation of alpha-synuclein.” Know this already.
“But patients with parkinsonism for 1 year prior to cognitive decline are classified as PDD [4].”
So they have all these umbrella diseases based on the excess of alph-synuclein AKA as Lewy bodies. And they have to make their educated guess on whether it’s PDD, LBD or DBL, or PD, or whatever, by which symptoms are showing and when, in what sequence, did these symptoms start showing.
Now here’s the kicker, and this is why everyone needs to be able to navigate the system as a patient or caretaker.
“Cognitive decline and parkinsonism are insidious, so the distinction can be difficult to draw and may be influenced by the subspecialty interest of the diagnosing neurologist (for example, movement disorder versus behavioral neurology) [1, 7]. Data on the relative frequency of DLB and PDD may be similarly affected by this subspecialty referral pattern. Whether or not the distinction has treatment implications is difficult to determine.”
So what do we know? We don’t know the cause of Lewy. We don’t know of anything that will cure Lewy or slow its progression. We don’t know how to predict its speed or debilitation because ‘everybody is different.”
How many Lewy cases are out there? I want to know. Docs and patients work together to get diagnoses early and often so we can study this disease. Break down silos between memory specialists and movement disorder experts. They should be in the same place, same building, same floor, same parking deck.
Patients be patient but pressing. Time is precious.
I am channeling my focus on improving the treatment and getting more research based on the words of numerous patients and caretakers with a brain disease who have reached out after my public story. My own situation is working well so far.
Getting the Parkinson’s diagnosis first was not unusual for Lewy body patients for reasons I’ve pointed out many times. I have a neurologist who has helped me get to the right balance of medications to treat Lewy. So I’m all right for now, just fine.
Bye. Heading out for nachos.
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I’d like to put in a bottle what I am doing to fight my dementia for everyone facing what I’m facing.
On this blog, I’m counting down, in photos and words, the 678 vinyl record albums I collected mainly in the 70s and 80s before CDs and digital took over. In doing so I am reconnecting with my past, and my memory of it. I’m finding forgotten memories. I’m rediscovering good (and bad) music.
And I’m loving it.
Every day is like Christmas to me. What is the next one to review? What surprise and memory will it bless me with. The discipline of writing connects me to my mind in a way beyond speech.
I’m doing this in addition to traditional drug therapy, on which I am combining a carefully calculated mix of Alzheimer’s and Parkinson’s medications. That’s because my disease, Lewy Body dementia has symptoms that resemble both degenerative brain diseases.
The problem is that Lewy Body, despite being the second leading cause of dementia after Alzheimer’s, is not well known. Early diagnosis is a key to getting on the right meds because some anti-psychotic medications, used in Alzheimer’s treatment, are contraindicated and dangerous to the Lewy Body patient. There is no cure, and its cause is unknown.
I am better off than I was a year ago when I was diagnosed. I felt miserable. I felt like I was antsy all the time. My arm would unconsciously slide up my side in the so-called gunslinger mode, a classic Parkinsonian symptom. But I had also had insomnia and REM sleep disorder which caused me to act out dreams, sometimes thrashing, punching and kicking. Not so great when you’re sharing a bed. Those are classic Lewy Body dementia symptoms, including waking hallucinations.
I believe I’m feeling better now because of the medication. But I believe I may also be doing well because of the value that blogging has brought to my psyche. It’s given me something fun to do while keeping my dexterity refined through typing and my memory honed by remembering and writing about remembering.
Will the meds slowly quit working, as frequently happens? Will I be unable to type at some point? That ability already fluctuates. My writing is often more coherent than my speech, I know that. Just an honest observation. In live conversations with people, I often forget names or crash my train of thought. I have to thumb through the bins in my brain to find the right words.
It’s one of the reasons I came out publicly with my disease because I want people to know what’s going on when they talk to me and not be afraid to ask me how I’m doing living with dementia. “Very fine thank you,” I say. “And what’s your name again?”
My friends and colleagues and many others I don’t know so well know it’s no sweat that I can’t remember something right away.
So long before the dementia diagnosis I had this idea of counting my records down and selling them one-by-one on eBay. It was, to be honest, a good argument over the years to thwart the pressure by my wife, Catherine, to get rid of the precious vinyl. But as you are hearing it is becoming much bigger than that. It’s a treatment. And it is also a written legacy that my loved ones can read to get a dose of me after I’m gone. If they want that dose. My beautiful daughters, young women, Hannah, Emily and Claire, don’t seem too too interested in the blog now. (Whaddya mean you don’t want to read my 1000 word dissection of the Allman Brothers’ influence on Southern rock and jam bands?).
in the future, something may resonate (or not). But i would like to leave something where they can remember and know who i was before i become not who i am.
My records represent many hours perusing record bins and many quarters and dollars, usually bought used or as cut-outs. They range from R&B, classic rock, hard core country, punk, funk, soul, New Wave, comedy, classical, folk, Americana, reggae, alternative, and jazz, both old school and modern.
Since I started in September, I have done 64 record reviews in 67 posts. Some of those posts had no album reviews as they were about other things I’m trying to write about such as basketball, journalism, and Lewy Body dementia. Sometimes, especially if I have multiple records from the same artist, I review them in the same posts.
So I have 614 reviews to go, not counting new vinyl additions my family and friends are giving me in a loving gesture to add length to the reduction in my life (and its quality) that Lewy Body will try to make happen.
That’s because I have vowed to finish this blog out.
I’m loving it.
Counting down my 678 vinyl records before I die of brain disease.
