Greetings all, this is Jeff with an update. All along this forum has been through the efforts of an ex-dentist and an ex-engineer, both with advancing dementia. We keep up with what we can but at the end of the day, we are lucky to get something out the door. Hell some days we are lucky to even find the door.
This should help explain the hap-hazard organization here. Here is the deal: we will keep doing this as long as we are able and capable. Once it is too hard or too many mistakes are leaking out, we will exit gracefully. One thing I hope to do before too long is hire someone to organize the pages and information, so all the medical stuff is in one place, the humor or ranting stuff is in another, etc. Plus, I know between us we have quite a bit of writing on the subject of LBD; these stories will get posted as pages off of the LBD Stories page. I will write when and if I can.
I have often said that the 5-minute neuro-psych test is a waste of time and if you are bad enough to fail that, they won't need a test to know it. Thus is was on my neurologist visit this week, she didn't need a test.
It is the strangest sensation to have the walls of your world closing in, only these walls are ones of cognition. At one time, I could easily understand not only what was going on in my own home but many things in the world around me. In addition, thanks to my profession I was well-versed in all things tech, right down to the screws.
My "Sphere of comprehension"
This is going to get kinda zen for those without the disease but I have what I think of as my sphere of comprehension. In this sphere of comprehension, stuff closer to you is easier to understand than stuff far away. Examples of things close to you might be your remote control, the microwave oven, your cell phone, etc. The stuff farther away is like politics, science, technology, etc.
Not long ago my sphere was full-sized, I knew all of it reasonably. well. As my dementia progressed, my sphere has gradually shrunk over time so things like politics, world events, even things that happen closer to home are confusing AF to me. Simple things like my videos, comic books, some video games, my garden, these things are close to me in my sphere of comprehension. This is what I will understand last, after I have lost understanding of everything else in my world.
This leads to something Randy touched on in his most recent article about conversations: People look at me and in many many cases assume I am being apathetic to things around me. This is partly from what the "common wisdom" on dementia has asserted, that we have lost touch and therefore are apathetic to most things around us. I know for fact a big chunk of the time I get accused of being apathetic, it is from being so confused by things that I am not reacting how the observer expects.
A fairly common way this plays out looks like this:
1. Something happens that both a normal and I see.
2. The circumstances of the event tells the normal this will cause a problem soon and they grow concerned.
3. I look at the same thing but not get the implied further danger so I don't spend time stressing it.
4. The normal sees this and makes the assumption that I am simply apathetic.
This scenario or one very similar to it plays out daily here. For a simple, real-world example:
1. We are in the car heading to the doctor when the Check Engine light comes on.
2. My caregiver expects a problem and knows that we should take it to the dealer ASAP.
3. I see the engine light and while I note that it is on, I feel no sense to worry or concern because its just a light with a picture of the engine. I draw no further concern from the situation.
4. My caregiver thinks I am nuts because I want to go shopping instead of getting the car checked and fixed.
Another similar scenario that also suggests apathy is when I am faced with several choices for dinner. Part of this is simply not being able to make a choice but since I can't make one on the spot, I do some kind of fallback thing like "Oh whatever you want" or "I don't care, whatever is cheapest", anything to get out of making a choice and anything to keep the conversation moving forward. Yet I get accused of being apathetic about what I eat.
Do you see a recurring pattern here?
I would like to close with the simple maxim that as your cognitive ability wanes, the appearance of apathy grows....