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 Strange but specific thing that breaks down with dementia 
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Joined: Fri Mar 10, 2017 11:36 am
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Post Strange but specific thing that breaks down with dementia
Greetings; First I apologize if this is in the wrong place. I am in a down-phase or getting there, will need to put the computer away for the day soon. However I wanted to write this as the fog sets in, something that I find frustrating as hell. I have often tried to explain this to my neuros and none seem to get it. There is aphasia when I am like this but its the classic word/phrase swap thing, nothing to write home about. The part thats frustrating though is the nearly total inability to translate whats in my head to words I can say. I have been an inventor amongst other things and the core tool of any inventor is the ability to express his ideas in either written or physical form. Going from the drawing board in his head to the real world. When I am like this, that line feels like it has been severed.

So the thing that hurts right now at this time in history is my ability to concoct a proper and effective search term for any search engine like Google, etc. I know somewhere in my head what it is I want but when it comes time to express even a simple search, I can't get even close, and I used to be pretty good at this sort of thing.

Here is a good example that just happened. In trying to adopt simpler hobbies I picked up gardening when I became fully disabled. Goes at about my speed these days. Anyhow I was trying to talk to my wife about an improvement to my system having to do with auto-feeders and I wanted to show her something I had seen in a series of Youtube videos about two years ago. I know they are out there. I have viewed them as recently as 3 months ago. But in a fog, no matter what I do to search them out, I simply cannot get even close. I keep getting results that are clearly way off the mark, I know what I want to find but damned if I can translate what I see in my head to the line. Even writing this feels like I am mentally constipated, not to put too fine a point on it. Painful and glad its over.

Jeff


Mon Apr 03, 2017 11:23 am
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Joined: Mon Apr 03, 2017 8:13 pm
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Post Re: Strange but specific thing that breaks down with dementi
JeffCobb wrote:
. . .having to do with auto-feeders and I wanted to show her something I had seen in a series of Youtube videos about two years ago. I know they are out there.

Jeff


Jeff, I hope you found what you were looking with auto-feeders. I hear you on your frustration in finding the words to express what you want to say. My husband is a retired financial executive, and was always very articulate. But now, he has such struggles. He worries about things and can't tell me what has upset him. If I can figure it out, then I can answer his concerns and he calms down. Otherwise, he gets more and more agitated. It upsetting for us both. So difficult

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jjKing, caregiver


Sun Apr 09, 2017 7:14 pm
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Joined: Fri Mar 10, 2017 11:36 am
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Post Re: Strange but specific thing that breaks down with dementi
jamieking wrote:
JeffCobb wrote:
. . .having to do with auto-feeders and I wanted to show her something I had seen in a series of Youtube videos about two years ago. I know they are out there.

Jeff


Jeff, I hope you found what you were looking with auto-feeders. I hear you on your frustration in finding the words to express what you want to say. My husband is a retired financial executive, and was always very articulate. But now, he has such struggles. He worries about things and can't tell me what has upset him. If I can figure it out, then I can answer his concerns and he calms down. Otherwise, he gets more and more agitated. It upsetting for us both. So difficult


Ironically no, never did find it but I was in inventor of sorts in a previous life and so was able to recreate what I saw in the video with a couple of pop bottles and a cereal bowl to demonstrate the method of the auto-feeder. Hint: if you have dementia meaning crapola memory, autofeeders are a gift from above if you are trying to do gardening and aren't really too good at it.

Jamie, I am still trying to marshall the few braincells I have left on the communication problem. The very one you point to is probably the single-worst part of it and if you think its bad now I can promise you the same exact situation at the ER and your husband is in any kind of pain, it will be almost impossible for him to get out whats wrong and worse, if the aphasia is like mine, the *wrong* words come out and the ER techs being in a hurry and not understanding no matter how many times they claim to will just grab your first words and run with it and in this case the patient has almost no chance of unscrewing the pooch, to twist a phrase to death. I also know that while my wife will be the last person I will have any meaningful discourse with, its going to be worse and worse because its getting worse NOW. So I am working on some alternative method of having a meaningful conversation even when you physically cannot do so. I may make it, may not. It will be a close race on time....but I have experience at this sort of thing believe it or not so its not totally pie in the sky. Just mostly ATM :)


Mon Apr 10, 2017 11:42 am
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Joined: Mon Apr 03, 2017 8:13 pm
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Post Re: Strange but specific thing that breaks down with dementi
JeffCobb wrote:
I am working on some alternative method of having a meaningful conversation even when you physically cannot do so. I may make it, may not.


Let us know if you have something!! Are you familiar with communication boards that are used for autism? My husband can still read and understand, even though he can't speak much. I was looking at these boards http://www.amyspeechlanguagetherapy.com/communication-boards.html. Before I invest any more $$$ in something that won't work, I'd be interested in opinions.

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Tue Apr 11, 2017 11:07 pm
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Post Re: Strange but specific thing that breaks down with dementi
jamieking wrote:
JeffCobb wrote:
I am working on some alternative method of having a meaningful conversation even when you physically cannot do so. I may make it, may not.


Let us know if you have something!! Are you familiar with communication boards that are used for autism? My husband can still read and understand, even though he can't speak much. I was looking at these boards http://www.amyspeechlanguagetherapy.com/communication-boards.html. Before I invest any more $$$ in something that won't work, I'd be interested in opinions.


<takes deep breath>...yeah I have seen those, have played with a couple...those boards (and software versions of them all over the web) feel like they are based on a more mechanical breakdown of the communication process whereas the problems at least that I have are mental/conceptual. To put it in context, say someone had a defect where they could not say the word "shoe"; if its a mechanical (not right word) problem, the board will work because the subject can go right to the concept or key they need. With the mental side, the whole concept of "shoe" might get replaced with "foot" and there is nothing on that board that will translate foot to shoe for you. These are simplistic solutions to what is a basically simple incapacity.

The approach I am toying with (as much as I can in this state) is the use of artificial intelligence (specifically neural networks) to "learn" that particular persons defects. In this case, after a few tries "foot" would begin to associate with "shoe" and so if the subject is uttering something (or writing, all models of this are being looked at) it will know that if the person says "foot" and its out of context with the rest of the sentence that the person likely meant "shoe". So in this way, this system will "listen" to my talking/writing and as it learns my way of communicating, my hope is it will allow me to get across what I actually meant vs what I say. There is alot more involved with it than this simplistic summary but this is at the end of the day a web forum and I hate composing stuff on its editor...:)


Wed Apr 12, 2017 8:50 am
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