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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
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Coping Strategies for Cognitive Dysfunction

Discussion in 'Lifestyle Management' started by Christopher, Nov 2, 2009.

  1. Christopher

    Christopher Senior Member

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    For any of you that have had success in dealing with the memory and concentration problems, I'd welcome any advice. I'm much better than I was at the outset of getting sick, but I still get frustrated at myself for not being able to follow a complex discussion at work or solve a problem that used to be a piece of cake.

    I've found that calling to mind the concept of the Buddhist "dukkha" helps me during these times, but of course I fail to remember to do this most times :)

    How do you guys cope?
     
  2. Koan

    Koan Be the change.

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    Everyone is in a state of mind/body collapse but I hope you keep this where we can see it because I think it's a really important question.

    I am a Buddhist so I may not have anything fresh to offer you as you are leaning in my direction already. Also, I do not have to deal with work situations since I'm on disability. It makes a huge difference.

    I'm sure you'll get good advice when everyone picks themselves up off the floor and stops moaning. It will happen.

    with metta to you,
    Koan
     
  3. caledonia

    caledonia

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    Try 100 mg of Co Q 10. It helps me about 80%. More might be better, but I haven't tried it personally. I get mine from Sam's Club, which is relatively cheap but it works as good as the more expensive stuff.

    Other than that, take lots of notes (like in a Franklin Planner so it will be well organized). Do your most complicated work at your best time of day. Try to minimize interruptions from phone calls, emails, etc. by only answering them at a certain time of the day.

    Take a nap at lunch if you can.

    You may be able to ask for accommodations under the ADA such as getting reminders for assignments, or getting them in writing, getting extra reminders for other things, being able to lay down and rest a couple times a day.

    On the other hand, depending on your employer, if it's a hostile work environment, letting them know you are sick and need accommodations might not be the best idea. You might get targeted as someone who needs to be ostracized/bullied/fired.
     
  4. bee33

    bee33

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    My cognitive dysfunction is not that bad, and I don't have a job where I have to deal with the issues you're confronting, but I would say that taking notes is a good idea. Even during discussions at work, you could jot down the salient points so when it's your turn to give your ideas you can refer to your notes. You could also carry a small pocket tape recorder to record reminders for yourself.

    When you're working on a task on your own, you could write down an outline of the steps you need to take to accomplish it, and then refer to it as you go, in a methodical, step-by-step kind of way. If you can, keep your work environment uncluttered and free of noise and distractions. When you're getting overwhelmed, take a break if possible. I find that even a very short break from thinking is very helpful.
     
  5. Hysterical Woman

    Hysterical Woman Senior Member

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    Memory Problems/Christopher

    Hi Christopher,

    I know this probably won't make sense at first glance, but taking Aleve actually helps me with memory and concentration. I have been asking doctors for 18 years why I am better when I take Aleve. It's not just that the pain is better, but I have a little more energy and less cognitive dysfunction. I was floored the other day when Dr. Mikovits told patients that taking over the counter anti-inflammatory meds such as Aleve or Advil might help people with CFS.

    I would love to tell you that taking Aleve makes my cognitive problems disappear altogether, but that isn't the case. I will, however, take any improvement I can get. Unfortunately, if I try to take Aleve on a daily basis, I get stomach pains and nausea about a week into it. Others may have better luck. I have been looking into the possibility of taking the herb turmeric since it has some anti-inflammatory effects.

    Good luck, you are not alone

    Maxine
     
  6. Jerry S

    Jerry S Senior Member

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    Chemo Brain Tips

    My cognitive dysfunction is similar to some people after chemotherapy. This New York Times article has some good tips for coping. It's by Jane Brody.
     
  7. jewel

    jewel Senior Member

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    Cognitive dysfunction is what I have found most distressing. I, likewise, have taken Aleve, off and on for years, with the same symptoms of nausea and stomach pain if I stay on it too long. I do try to use tumeric, ginger, etc (natural inflammatories) in meals, tea, etc. I do take mb12 and phosphatadyl serine daily. I do think these help. Nevertheless, I have days where I am unable to tackle complex tasks, get lost in familiar neighborhoods, and feel as if I am in an awake/asleep state. I look forward to reading the other suggestions. Best to all of you, J.
     
  8. Jerry S

    Jerry S Senior Member

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    Hi Jewel,

    A warm welcome to the forum! :) :)

    I'm sure you're going to get some good suggestions here.
     
  9. jewel

    jewel Senior Member

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    Thanks!! The article in the Times was very helpful. I'll have to print it out; otherwise, I won't recall half the suggestions. Any other suggestions are welcome (very welcome).
     
  10. Christopher

    Christopher Senior Member

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    Thanks guys. I will definitely try the Aleve just to see if that helps or not. The one thing that's helped me in the cognitive department is Sudafed, probably due to the increase in norepinephrine it causes. The Sudafed helps my OI greatly as well, but I can't take it for consecutive days because its effectiveness disappears.

    A couple of years ago, Immunopro helped me as well, but after about a month its effectiveness also waned.

    I'm going through a time in my life where I really need to be thinking clearly. I just graduated college in June and need to decide what to do about my career, such as it is.

    Best of luck to all of you,
    Chris
     
  11. _Kim_

    _Kim_ Guest

    There are lots of reported benefits of massage, but we don't understand the mechanisms of action. Massage certainly creates some manual movement of lymph, but, to my knowledge, it has not yet been demonstrated that massage can flush cytokines and chemokines from your system. It's more likely that massage initiates changes by interacting with the nervous system more directly - through the skin receptors as well as through mechanoreceptors of the deeper structures. If cytokines/chemokines are eliminated, it's more likely because of a systemic response governed by the CNS, not directly from the application of the treatment.

    I heartily endorse massage therapy, but the field has been steeped in pseudoscience for years. Is massage therapy helpful for cognitive dysfunction? Probably not. But it can stimulate the nervous system in ways that are unpredictable, but welcomed.
     
  12. Jerry S

    Jerry S Senior Member

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    This is so ironic. We're too cognitively impaired to read and remember the article on cognitive impairment! :eek:

    Another thing that has helped me, Jewel, is playing an online game designed for people with MS. They have many of the same cognitive problems as people with ME/CFS do.

    The MS games can be found here.

    Even the lowest levels may be too hard for p/ME/CFS. I had to work my way up.

    Basically, they test memory and reaction time, while confronting you with distractions. :eek: But I find it fun. After a while I began to look forward to playing them. :rolleyes: You don't have to register to play, but just if you want your scored saved.

    The instructions aren't very good (part of the game?). What you need to know is this:

    To duck the balloons, press the down arrow key and hold till the balloon passes overhead. To jump rocks, hit and release the up arrow key. The jump is automatic. To select an overhead ballon, hit the up arrow.

    Have fun! :)

    I've read it helps cognitive skills to develop motor skills. It's usually recommended to switch hands when performing routine tasks. Start brushing your teeth with your left hand, for righties, for example. I think this has helped me.
     
  13. sarahg

    sarahg Admin Assistant

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    1. stop and close your eyes, take a breath, center yourself, and get your bearings. It is surprising that one can sometimes snap out of brain malfunctions this way, but it's sort of like a few brief seconds to reboot. When I was still working I did this a lot. (but I was still at my college kid indie movie store job, and my boss was understanding enough to only schedule me for times there would be 2 people working)

    2. sometimes the ridiculous things your brain does can be hilarious, (like when I catch myself looking for silverware in the fridge) and there's nothing you can do but laugh at yourself hysterically.

    3. none of the above will help you follow conversations or pay attention when there is noise coming from multiple sources. Doing whatever you can to reduce the ammount of stimulation your brain is receiving at any given time can make it less bad. Finding the most quiet area to work in if possible, trying to make the lighting less overwhelming, getting rid of background noise, trying to keep people from all talking at once, stuff like that. but it is not always controllable.

    4. The only things that have really helped my brain be normal are glutathione injections (but the effect lessened over time) and immune globulin injections (which are the MOST amazing thing in the world, but there is a plasma shortage and I cannot get them right now, so I hestitate to advertise how helpful they are, but that is just selfish)
     
  14. Wayne

    Wayne Senior Member

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    Tapping Cortices for Cognitive Dysfunction ?

    Hi Christopher, Hi Everybody,

    Thanks everybody for your tips. I found them to be very interesting and helpful.

    For me, the better I can control the amount of stimulation I'm dealing with, the better my cognitive function. I've found many things to be helpful in this regard. Taking breaks, taking naps, doing polarity (energetic) techniques, alpha stim microcurrent therapy, etc.

    There was a thread here a couple months ago by Kelly (username kolowesi) on balancing your cortices. She posted a link to the bodytalk website, which starts out with the following:
    ...........................

    How to "Tap Out" your Cortices

    The Technique

    We feel that the simple Cortices Technique, one of the core techniques of the BodyTalk System, and the BodyTalk Access program, is so powerful that we want to share it with everyone.

    In this short video, Dr. John Veltheim, Founder of the BodyTalk System describes and demonstrates the Cortices Technique - which balances the left and right hemispheres of the brain, and general brain function.

    The IBA believes that everyone should be able to balance the cortices; their results can be immediate and profound in restoring healthy balance.
    .........................................

    I have found it to be very helpful, and find myself doing it every few hours or so. BTW, it's easy to do and only takes about a minute.

    Thanks again for all your tips!

    Best, Wayne

    ETA Kelly's original thread: BodyTalk Balance Your Cortices in 1 minute -- Thanks Kelly!
     
  15. meandthecat

    meandthecat

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    In the early days when things were really bad and I couldn't think my way out of a paper bag I used routine as a way of holding my life together. I avoided anything new and stuck with what I knew and allowed a sort of 'body sense' to do it.

    I could only do one thing at a time and had to learn how to stop people pushing me, so I think I became much more controlling of my space.

    Now I can think of two things at once but I try not to because I can so easily go into overwhelm where everything just shuts down. If I feel it beginning I pull my focus onto one thing and hold it there till I stabilise.

    I use visualisation as a tool to track the dysfunction and to ease and balance the sensation, clearing the fog, allowing space for pressure and pain and hardest for me focus and concentration.

    I get glimpses of how I once could use my mind like an amazing unfolding vision, being able to think so far , to twist and dive through a virtual world and then its gone like a dream.

    The pain and exhaustion are bad but it is the cognitive dysfunction that has hit me the hardest.
     
  16. IntuneJune

    IntuneJune Senior Member

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    Clear minds---not

    I love that!!!!!

    I have tried to make more than one telephone call with the tv remote.

    June
     
  17. Hysterical Woman

    Hysterical Woman Senior Member

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    Not so clear minds

    Thanks for your stories guys - I did the following two weeks in a row!

    Was out running errands and stopped for coffee to go. I open the coffee top and get creamer out of a paper bag they gave me, opened the creamer, poured the creamer into the bag all the time staring at the coffee trying to figure out why it wasn't getting lighter in color.

    Good thing we can laugh about these things :)

    Maxine
     
  18. shrewsbury

    shrewsbury member

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    physical dyslexia

    I'm glad to see others also have what I call "physical dyslexia" (well, not really glad you have it, but you know what I mean......)

    I have a couple different types
    - typing (transposing letters),
    - mixing up words, usually by 1st letter and same word type eg I'm taking these books to the laboratory",
    - and physical - both mixing up things and just putting the wrong thing in the wrong place
    eg putting a piece of garbage in the fridge and keeping the milk in my hand
    eg plunging my hands into boiling water rather than taking it out to mix with cold water, and then to wash

    Poor Christopher - sounds like he's functioning at a much higher level and won't find these coping types so helpful. Sorry if we've veered slightly off course.

    What do I do about it?

    1st, if I'm doing anything potentially dangerous, I don't just do it. I take a second, look at what I'm doing, make sure it's all safe........... Amazing what stepping back for a second can do (yes, it's quite buddhist)

    2nd - I watch people's faces when I talk - if they make a funny face I try to figure out what I've done

    3rd - I use a spell checker and try to double / triple check any writing

    4th - I try to pay attention to what I'm doing instead of just doing it unconciously

    5th - humour and acceptance - I laugh at myself alot!

    if:)
     
  19. annunziata

    annunziata Senior Member

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    There seem to be gremlins in my brain that throw the switches governing clarity of thought -- and it's just as unpredictable and hard to control as my other symptoms. The problem for me is that when it's bad, it's very difficult for me to utilize the coping strategies I come up with when I'm thinking more clearly. They no longer occur to me, or make sense to me.

    I was always quite a reader and was reasonably articulate, and the hit that's taken has been hard. I read the dictionary, just scanning it randomly for a few minutes every day or so -- over the years, I've underlined words that I'm fond of, or don't use that often and am likely to completely forget, etc. This seems to help with the aphasia. I'm sort of a word person, and I can't let that go without a fight!

    I paint, and although that is difficult physically now, whatever part of the brain works out problems in a painting seems unaffected by this illness. So it's something I can kind of 'retreat' into -- even a figural painting or drawing isn't analytical in the same way as written text, or certain seemingly simple problems I have to solve in the course of a day. Like whether books go on bookshelves or in the refrigerator. You do have to try to laugh at some of this...

    How do people cope with the sudden crashes of cognitive function? I drove to an animal sanctuary I had wanted to visit for a long time -- about a forty minute drive, quite demanding for me. By the time I was ready to come back, nothing made sense. I had to pull over and sit in my car, waiting for the light to come back on, so to speak. I knew it was risky to go out in the first place, but I go out so little, it was an attempt at a special day, and ended badly. (I eventually found my way home ;).)

    Amy
     
  20. shrewsbury

    shrewsbury member

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    Too true Amy! If at all possible, when I know things are at this point I try to quietly rest alone.

    And you still are! In fact, you're extremely articulate. Some of your posts have so clearly expressed what I can only point at with a stick and say "ugh"

    To me, creating those special days/moments is a priority. Now if I continually bite off more than I can chew, I eventually realize it and scale down what I can do that's special.

    But, in this situation, it all sounds good to me. You made it there. When you crashed, you recognized it and pulled over until all was good again. And you made it home safely. I say "YAY you" and hope you'll continue to feed your soul as it were.

    I find getting out of the house to be so important - even if it means going in my pjs and sitting on the steps (or sort of lying across them). There's something about fresh air, no walls, being able to look out for a distance, the smells, the light, the wind..............So I hope you continue to be drawn outside, even if it's not as far.

    Your art sounds wonderfully theraputic.

    sorry - tired - signing off

    if:)
     

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