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 Crowds, noise, and all the rest 
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Joined: Sat Mar 25, 2017 1:32 am
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Post Crowds, noise, and all the rest
Good morning all,

I'm finally home. All the condolences have been said, the lingering, sympathetic hugs have been given and we have said our goodbyes. It was a long weekend. One filled with sadness, loneliness, grief, rejoicing, reminiscing, and camaraderie. Such is the time spent when a brother is buried.

All of these are normal human emotions, most would be concerned if at least some of these emotions were not displayed. But this is not the point of my post. You all know these emotions only to well. My point is to give you another view, that of the DLB patient. At least this DLB patient. Things vary greatly between each of us.

Of course I felt all of those emotions. Throughout my life my brother has been my hero, my best friend, one of the very few people I turned to in time of need. But I also felt terror, I felt trapped, bombarded, and overwhelmed. As my disease has progressed I have become increasingly sensitive to the claustrophobic feel of crowds, the overwhelming crush of the quiet din of the crowd, the intrusive feel of every kind touch. I feel as though every fiber of my soul is being bombarded from every conceivable direction, that the air is literally being sucked from my lungs. It is the ultimate in sensory overload to an already less than clear mind. The result is that every fiber of my being is yelling at me, "HEY! This is not good! We can't do this! Get me out of here!". Repeating, over and over again, becoming overwhelming in and of itself...
So, in addition to the normal emotions this is what we, at least I, deal with. If we appear anxious or as if we're trying to claw our way out of the situation it is because we most likely are. We're trying to breath.

That's it. That's the whole nightmare. Add that to the normal grief and loss and you have the makings of a scrambled mind.

Thanks for letting me explain,

Randy


Tue Apr 25, 2017 6:39 am
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Joined: Fri Mar 10, 2017 11:36 am
Posts: 135
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Post Re: Crowds, noise, and all the rest
Poppygail wrote:
Good morning all,

I'm finally home. All the condolences have been said, the lingering, sympathetic hugs have been given and we have said our goodbyes. It was a long weekend. One filled with sadness, loneliness, grief, rejoicing, reminiscing, and camaraderie. Such is the time spent when a brother is buried.

All of these are normal human emotions, most would be concerned if at least some of these emotions were not displayed. But this is not the point of my post. You all know these emotions only to well. My point is to give you another view, that of the DLB patient. At least this DLB patient. Things vary greatly between each of us.

Of course I felt all of those emotions. Throughout my life my brother has been my hero, my best friend, one of the very few people I turned to in time of need. But I also felt terror, I felt trapped, bombarded, and overwhelmed. As my disease has progressed I have become increasingly sensitive to the claustrophobic feel of crowds, the overwhelming crush of the quiet din of the crowd, the intrusive feel of every kind touch. I feel as though every fiber of my soul is being bombarded from every conceivable direction, that the air is literally being sucked from my lungs. It is the ultimate in sensory overload to an already less than clear mind. The result is that every fiber of my being is yelling at me, "HEY! This is not good! We can't do this! Get me out of here!". Repeating, over and over again, becoming overwhelming in and of itself...
So, in addition to the normal emotions this is what we, at least I, deal with. If we appear anxious or as if we're trying to claw our way out of the situation it is because we most likely are. We're trying to breath.

That's it. That's the whole nightmare. Add that to the normal grief and loss and you have the makings of a scrambled mind.

Thanks for letting me explain,

Randy

No explaining needed, your words express the situation eloquently. When trying to describe this situation/feeling with normal folks the best I have been able to come up with is imagining having to pee and not being allowed to go for 3 days....after the first hour its about all you can think about or focus upon. And it doesn't leave much of "you" left for anything else...
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Tue Apr 25, 2017 8:45 am
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Joined: Sat Mar 25, 2017 1:32 am
Posts: 48
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Post Re: Crowds, noise, and all the rest
:lol:


Tue Apr 25, 2017 8:48 am
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Joined: Fri Mar 10, 2017 11:36 am
Posts: 135
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Post Re: Crowds, noise, and all the rest
Poppygail wrote:
:lol:


Randy, all joking aside I am going to ask you to go on a mental trip for me. You know what you felt and you know or at least feel you know pretty much why. So...this is going to be tough. So what if you had to deal with situations like that or any crowd-based situation with too much input which impedes your ability to think and accomplish whatever you were trying to do. But in this sort of alternate-universe you could sort of turn-down the amount of input to a level that you could handle, even if it meant dialing it all the way to zero on some days....if you had this ability to interact with what I am thinking of as a "diffused reality" that you might stand a better chance of dealing with it unscathed and participate more.

I can't explain it any better than that w/o explaining a lot more beyond the scope of this thread but its something I have been playing with, both to make me feel better about being stuck home most days but also as a way to help toughen myself up with simpler realities to prepare me to deal better with enforced sessions with the public.

I do have an unrelated thing to add though, something else I have thought about for a long time. Am I the only person to remember sniglets from the 80's I guess (was living in Europe then so not exactly sure when they came out in the US)? They are words or names for things we don't have words for, usually made up by comedian Rich Hall if I recall. Anyhow there is a feeling you feel with LBD, in the situations like Randy just felt to when I have had problems and we tend to call it "pain" to get across to normals that its something bad and barely tolerable, but only barely. But pain is the wrong word and I had using it every time I do. My arthritis makes sure I never confuse actual pain with anything else but what the hell do we call this? I know you and every other patient out there knows what I mean, you have felt it even if you haven't been able to explain it....but the "pain-not-pain" I feel when I am stuck struggling for words at a restaurant or in a deep fog and cant figure out where I am or what I was doing or when my caregiver is gone a few days and because of the time perception problem I have no feeling other than she has been gone for months and won't be able for months more. When its tomorrow I can't tell it isnt yesterday and so feel no forward progression of time. Or finding some software I wrote last year that I can no longer figure out how I did. Etc. Its the "bad" feeling I can't describe and so use pain because while its wrong as hell, it works allows me to stop trying to speak.


Thu May 04, 2017 7:30 pm
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