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README FIRST: The Demented Perspective

My name is Jeff Cobb and I have Lewy Body Dementia, or LBD. When first diagnosed I found an absolute paucity of sources of good information, not just on LBD but dementia in general. Working with some like-minded (in all ways) folks I have decided to have a single place to put everything I have figured out about it.

This site is run by two guys with dementia.  We are doing our best and hope this place might help someone who comes after us with this disease.

Basically troublemakers; if you are looking for the Hallmark movie type dementia site, keep on clicking baby.

Think: Beavis and Butthead on Dementia.

Since there seems to be some interest in patient-eye-view descriptions of dementia, I decided to set aside a space just for videos and stories strictly about that. I will do my best to keep this up-dated but it will only contain the best of this type of thing...

Strictly stories from the demented POV:

The Path to My Retirement Cottage: The trick I discovered for quickly jetting away to your mental safe-room, and its all thanks to Parkinsons.

Us VS Them: How Type-A patients and their loved ones view decline...

Nothing Is As It Appears: Of Nincompoops, Nightmares and Very Thin Ice

Just When You Thought You Were Off the Hook: Just read it, too hard to explain...

Anatomy of a Complete LBD Cycle: An attempt to document going temporarily insane....

I Am Now a Stone Skipping Across the Pond of Reality: I seem to be cruising along somewhere north of about 15,000 feet, only occasionally touching down to dip my toes into the reality we all share...most of the time...

Video Games and Dementia: Our generation of dementia has an edge our parents generation never had....

Zoning Out: It doesn't hurt but sometimes the consequences suck...

Dementia and Illness: A match made in hell..

The Unexpected and Sudden Loss of Everything: After the latest plateau I am experiencing a whole new level of disrupted sensory perception...and its just plain wild...

A Rose By Any Other Name: A description of "plateaus" or trigger points where LBD patients tend to experience non-trivial and non-temporary leaps in the disease progression...

Notes From the Fog: An attempt to report back from an LBD fog cycle...

Project WikiJeff: A sort of mental test project to see if there is a way to use technology to capture a patients working knowledge of his or her life to later assist that patient as cognitive abilities diminish...

My Sphere of Comprehension: I see the bubble of my understanding all around me. As this bubble shrinks, the outside world becomes even more confusing...

I'm Just Sayin': I know dementia is terrible and messed up but I am used to trying to make things work for me, and not just surviving them....

A Strange Kind of Aphasia: LBD has forced my manner of speaking through many looking glasses..

I'll Meet You at the Crossroads: I am at a point where travel to my cognitive retirement cottage in my mind is so easy now that I am really reaching to find reasons to stay in this world.....

Executive Function Disorder: the bane of my existence. Almost every dementia symptom can be traced back to this key damage point with dementia...I wrote this when I was first trying to understand what was happening to me. With a slight edit or two, it stood the test of time OK so here you go...

The Undiscovered Country: this is how I see the coming fog ....and beyond.

How Many Nuts Can You Fit in a Boat: a different perspective on stages of dementia and isolation.

My Final Refuge: how the constant encroachment of the worlds insanity has pushed me into a final refuge and possibly larger reality after all...

What its like to have Lewy Body Dementia, Pre-diagnosis: there are two major periods of your LBD, pre- and post-diagnosis. Everything changes at that point, nothing is the same anymore. And thats a good thing.

Reality is getting thicker: how moving through a day with a mental disease can lead to literal physical exhaustion...

The Worst Part of Dementia: People say sometimes, timing is everything. For us it can be *everytime*.

Reality is starting to feel like an alien planet: the reality that others describe and the reality that I live are both very real to me and very different to each other......

Objects in mirror are stranger than they seem: Sometimes its a matter of where you are standing but at the end of the day, its you that must pick your battles...

I'm Just Sayin': LBD can be the disease with benefits if you look at it right...

Fade To Black: sort of explains how we perceive new (to us) television and movies, even things we would normally devour...

From The Other Side of Their Eyes: Peek behind the eyes of someone learning they might have dementia...things aren't always as simple as they seem.

Exploring the Fog: This time as the fog was descending I decided to go for it instead of fighting every step of the way....

Demented Happiness: I will be posting short little fact-lets about dementia that can make your life pretty fun.....

Time Trippin': Where I try to document the fog and how flexible time becomes once dementia sets in....

Parkinsonian Symptoms from an Engineering Perspective: when viewed from the inside (and with a few decades of computer OS design and implementation experience) makes the symptoms it seems puzzle others blindingly obvious...

Apathy: It's not as bad as you think and worse than you ever thought it could be: An understanding of what is and is not apathy from the patients viewpoint..

Be Who You Actually Are: I realized two vital things: 1. Dementia (Lewy Bodies in specific) have reprogrammed my brain and I am in point of fact (cognitively) a new individual, a new person. Now since no two people are exactly the same, most every unique person has unique abilities so as a new person I set about finding my own. The result of letting go of the old "me" which is something gone for good, and embracing who and what I am now finds me in a much more peaceful place, a Mellow MCI if you will...

Our Videos:



Final Refuge


Failing at common things *can* be depressing; who knew.



Doctors don't get it, sometimes the tests can be harder on us than the disease.


What it feels like (and what generally happens) when I am forced to answer the door and deal with the public


Everyday situations can confound us



My Dementia/Cannabis PSA

I just realized YouTube might have cows over that one so here is a local copy:





How normal people under 50 can experience what aphasia feels like




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