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Strategies for coping with cognitive difficulties

Discussion in 'Neurological/cognitive/vision' started by InfiniteRubix, Mar 23, 2019.

  1. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    Moderator note: new thread started from post in this existing thread.
    https://www.s4me.info/threads/plunging-grant-application-rates-test-nih’s-commitment-to-chronic-fatigue-syndrome-me-cfs.8696/page-5#post-154200




    Wow. I can relate to so much of this. My existence used to be synthesising massive numbers of things into an overarching vision, insight or strategy in my head. Lateral thinking writ large. Putting things down in a communicable form was onerous. Now that is a nightmare. And switching tasks, or even stopping tasks feels like physical pain. I feel your pain. Even my old mind mapping is not saving me in my new found housebound tasksless existence :(

    I am not diagnosed as Asperger's/ASD, etc. But I have no illusions. Hypermobility is correlated with ASD I believe. And... Hypermobility is correlated to ME. Ok, correlation is a dangerous oversimplifying word, but a solid Venn overlap of increased probability comorbidities.

    I'd love to see if others have battle-hardened cognitive strategies or views.

    (Edited to make sense after posts moved to new thread.)
     
    Last edited: Mar 23, 2019
  2. Alvin

    Alvin Senior Member (Voting Rights)

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    Glad i'm not the only one but wish i had some ideas to share on how to fix the issues :cry:
     
    Last edited by a moderator: Mar 23, 2019
  3. Wonko

    Wonko Senior Member (Voting Rights)

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    Thank you @InfiniteRubix (and moderator)

    I also recognise the experience @Alvin describes but couldn't figure out a way of working it into a post, given the thread was several posts advanced when I read the account of @Alvin.

    Of course that was yesterday, or maybe further back, so now I've forgotten what I was going to say in reply, but hopefully I'll remember before this thread grows so much it's no longer relevant ;)

    ETA - I do have a diagnosis of ASD and you certainly express the way you think as I used to, and still do on occasion. No bad thing IMO ;)
     
  4. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    Thank you moderator
    Super human powers IMHO :yum ;)
     
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  5. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    I used Mindmapper in the past on Windows. Now I use XMind. Well, always used to, pre-ill. Tricky now.
     
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  6. Wonko

    Wonko Senior Member (Voting Rights)

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    I used to use variants of critical path analysis, mixed with simultaneous top down bottom up middle out stuff to 'grow' a solution out of the connections (all very 70's), when I was in my early teens. After a while I allocated a partial to handle it, much more efficient, and capable, then that wasn't necessary unless I needed to play with a problem. It's simply not necessary to handle most of that sort of thing consciously when a lot of the time a queryable, and zoomable, ballpark answer is all that's needed for most applications. A simple, fast and accurate system. Otherwise known to neurotypical people as 'feel', just a tad more...... lol.

    The problem is visualisation is critical to everything I used to be able to do, and that's gone.

    My primary solution to cognitive issues appears to be...tradition....I do what I have always done, more or less. Problems occur when something new and unexpected comes up, otherwise I either cope or things just don't happen, depending on my health at the time. and then of course there are other issues, like forgetting core skills, like how to operate a kettle, tie shoelaces, that sort of thing - best waited out until the automatics come back on line i.e. stop, try again a minute or 2 later, repeat if necessary.

    Of course I do some really stupid things, but probably no more than I did when I was 20, just different things.
     
    Last edited: Mar 23, 2019
  7. Alvin

    Alvin Senior Member (Voting Rights)

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    I've been planning to look into a good mind mapping software but i have too much higher priority to handle right now.
     
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  8. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    Perhaps you have "Executive Dysfunction Disorder"?

    https://www.additudemag.com/what-is-executive-function-disorder/

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4084861/

    I have developed this over the last 10 years or so although nobody ever mentioned my executive functioning until very recently. When it did get mentioned for the first time I didn't know what executive functioning was.

    One of the problems I have is that I can do something e.g. browsing the web, and I might plan to make dinner after an hour. But once I've started doing something I can't switch tasks like normal people can. It is as though I'm on a train going in one direction, and I can't switch to a different task because there are no points (as in points on a railway track). I get stuck doing things I don't want to do and don't do things I do want to do because it is easier than changing tasks.
     
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  9. Wonko

    Wonko Senior Member (Voting Rights)

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    On the self test I only get 80%, and in 2012, last time I was assessed for cognitive issues, I was told that one of the main reasons I wasn't being lumped in the dementia category was because my executive function was so high, far higher than would be expected at my age.

    On the self test I would have scored higher back then (i.e. closer to 100%, if not actually 100%) so my conclusion is, they ain't asking the right questions.

    Looking at the questions that knocked my score down the main reason I don't score higher appears to be I now have better strategies in place, not down to any innate difference in me.
     
  10. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I think along with finding strategies it's good to know what the deficits are exactly.
    I'm seeing some things that I recognise.

    @ladycatlover 's inabilty to change tack easily is one.

    Slowed processing speed is another I think I saw.

    I would add easy mental fatiguability. I have no cognitive stamina and loose focus easily.

    Word finding is another.

    And executive function I think needs some filling out of the concept and may be more than one think in terms of deficit.

    I wish I knew what others as I know there is more.

    I'm not even sure I could identify coping strategies as some are of such long standing they are just a natural part of functioning now. But I have for decades relied on lists as a sort of external memory system.

    Very organised lists. Olympic level.
     
  11. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

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    I think the heading for this thread is a good one: strategies for coping with cognitive difficulties.

    Personally, executive function disorder looks too broad and vague to mean much to me. Sure, lots of it is familiar but I’ve definitely not had it all my life, or even all the time. And there are a lot of points that I don’t recognise in my experience. So, combined with the fact that (even if you do figure out what a neurologist/psychologist/neuroscientist would call your difficulties) there’s not much we can suggest for treatment of them, I think that diagnostics are less important than coping strategies.

    So, my contribution (familiar to most of you I guess):

    • repeat aloud the thing you are about to do 3-4 times before moving, on the way and definitely as you pass through doors.
    • make very very short to do lists:
      • 3 quite achievable items is my rule,
      • which I always break but I do genuinely try for 3.
    • practise and rest.
      • practise:
        • Educational apps: they seem like too much to add to an already challenging day (and often they are) but they are designed to give a sense of achievement and to track your progress, they’re infinitely patient and always there. Sometimes I do them on days when I can’t do much just to feel like I did something.
          • I am currently using duolingo for the exercise/practise part as it doesn’t matter if I struggle, and, although it does the sad owl face, I’m not letting anyone down if I quit on a given day.
            • I can’t do new languages, just ones I already had some proficiency in but I am gradually improving.
          • On really good days I tried Euclidea and Pythagorea (again, I was a Physicist so maths is familiar) but I can’t get past a certain point now because I can’t remember what I learned in previous levels. Even when I’ve recently redone them. :/
        • I have had a lot of success using garden and orchard tasks in the past but now I only have the odd day when pruning a tree isn’t paralysing (too many decisions to balance). Hoping I’ll get back there. I seem to be able to work to 1-2 rules for a while before I cognitively freeze. The trick is over-riding new information - risky but the alternative is to sit paralysed (initially I just can’t make a good decision but then, forgetting to pay attention to my body, I can physically seize up) until my dog tells someone where I am.
        • Now I like repotting seedlings in ever so slightly larger pots. Seems dumb but it results in very robust seedlings for the garden and gives me a small task each day (have to wait until the roots peep out the bottom) that leads to success.
    • Rest:
      • I only do cognitive tasks for 7 minutes at a time repeatable once only. I use the timer on my iPad as most of my cognitive tasks are on it. It’s -really- annoying. But it works.
      • I use the ScreenTime function to limit the total amount of time I spend on the most time consuming apps:
        • web browser (1hr/day),
        • email app (1hr/day),
        • and even a very generous one on my puzzle app (2hrs/day) which I use to relax my thoughts because I really can have too much of a good thing.
      • These are maximums, by preference it is much less. But of course some days I break the rules too.
      • It’s a real achievement to manage a balance between doing and resting. In reality, my greatest accomplishment in the past two years was in showing myself that I can do that: pacing. Even if I sometimes don’t.
      • I let a lot of urgent important things just go. Eventually there are only a few important things. I give myself a reward after spending 7 minutes on it (no matter the outcome) and try again later (just 7 minutes).
    Sorry, no idea why I ended up with a treatise when I started with just three points. My screentime has just told me I have 5 minutes for browser so I’ll leave it there.

    Hope you guys have other strategies to cope I can share.
     
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  12. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

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    I got 53%. I can't actually work out if that is a good score or a bad score or just average. And if it is a good sign, I'm not sure what it is a good sign of!
     
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  13. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

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    Um, there’s a self-test?
     
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  14. Wonko

    Wonko Senior Member (Voting Rights)

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  15. Alvin

    Alvin Senior Member (Voting Rights)

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    I don't buy this "disorder" but thats a topic for another discussion after we fix our cognitive issues.

    That said i would agree executive function is a big issue, also working memory, i can't write articles or sustain tasks that are complicated yet i am full of useful information and can do limited processing on them, and also ability to read and retain or process concepts is messed up, i can't easily read flyers an can no longer read books or complex articles (but can handle simple ones). A great example is i can read Electrek.co articles but not Cleantechnica.com
    Both are similar subject matter but Electrek is basic reporting and Cleantechnica is nuanced analysis. I have trouble following that these days.
    I can't sustain the concentration to organize things, from files to bookmarks to the house its impossible to do for long or to complete.
    I can also follow topics for a while but crash out after a while. New topics are easier then ongoing ones.
    I also repeat myself a lot
     
  16. Wonko

    Wonko Senior Member (Voting Rights)

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    I agree @Alvin - I don't buy it either.

    They have the symptoms down pat, but the explanation doesn't work, for me.

    I'm also quite unsure that they understand the problem. e.g. making time external by using clocks to make sure things get done, is, at least in my case, total rubbish. If I know something has to be done by 3pm, and I can see it's nearly 3pm, it doesn't get done.

    If it was going to be done it would have been done that morning, or whatever. If it's not done as the deadline approaches it may be noted, no more than that, possibly with a slight sense of unease, but, even if reading that it has to be done, by 3pm, at 2.58pm, if I'm not functioning well enough to have already done it, it won't happen.

    I'll probably go and make a sandwich, or grab a biscuit, instead. While I try and understand the problem, which to be honest, hardly ever works.

    Or other words that make sense.
     
  17. Alvin

    Alvin Senior Member (Voting Rights)

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    Indeed, if i had the energy i could write a novel on this (and plan to if we get an ME treatment someday)

    I scored 73% :emoji_laughing:
     
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  18. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

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    Sorry, I’ve just done the test and I’m not sure if a high percentage is good function or good correlation with Executive function deficit (you may have the condition)?

    eTA and what is considered a high percentage for this test? Over 50?
     
  19. Wonko

    Wonko Senior Member (Voting Rights)

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    Based on the questions the higher the percentage the more likely you are to have whateveritisdisorder.

    It doesn't matter what percentage you get as without the strategies that allowed me to gain 2 questions then i would be on 95-100%, and what's it's picking up appears to be generalised cognitive impairment, not whateveritisdisorder.

    And I'm pretty sure it doesn't do a very good job even at that.

    I would estimate that people, young, non scatterbrained, people, should get a score of between 0% and 10%, unless they are tired, drunk, or otherwise in an altered state of being.

    I would also estimate that anyone over the age of 150 would be unable to complete the test, thus proving this tests methodological invalidity (as being unable to even start to complete the test would suggest a very high likelihood of having whateveritisdesiorder).:D
     
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  20. Alvin

    Alvin Senior Member (Voting Rights)

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    I assume the higher your score the more likely you have ADHD


    I hope i am still around then and in decent enough health that i want to still be living :laugh:


    I just read the wikipedia entry on Executive function, very interesting
    https://en.wikipedia.org/wiki/Executive_functions
    Assuming it correct (a big assumption imo) the first thing that jumps out is
    Its page is interesting enough but does not suggest anything thats helpful to us in treating the cognitive ME issues
     
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