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.

1. Do you forget things, names for example? Um, sometimes.
2. Are you constipated? Um, sometimes.
3. Do you have muscle and joint stiffness? Um, sometimes.
4. 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.
5. 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?

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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