Home > Geekalicious, Making Disability Visible > Selecting An Auxiliary Brain

Selecting An Auxiliary Brain

Here’s the problem:
I’ve got migraines. So I take topamax. Topamax helps decrease the occurrence of daily headache and decrease the frequency of migraine. But topamax has side effects. A really bad one is cognitive confusion. This manifests itself in several ways. One is during speaking – I’ll be just on the verge of pronouncing a noun and will suddenly feel as if I’ve been choked – the word is gone. This is not your usual “oh, I can’t think of the word I want”. The word is there, it’s about to be pronounced, and I have the mental sensation of having it ripped out of my brain. It literally leaves me speechless.


Spelling is another place where it shows up. I’ll have trouble with the simplest of words. I’ll begin to spell a word while writing – say, “health” as happened to me one day. I’ll get “he” written down and then have absolutely no idea how to proceed with the word. Not only do I not know how to spell it correctly, I can’t spell it incorrectly. When I think of the word in my mind, there is a blank. The letters “he—-” and nothing following them. The sound of the word health, the meaning of the word health, but no shape or look or feel of the word health. Usually after a brief interval it goes away but it’s always disturbing when it happens.
A third major area of cognitive confusion is just simply forgetting. Forgetting from one second to the next what I had done, was in the middle of doing, or was planning to do. Laundry left in the wash machine for days, till it gets stinky and needs re-washed. Once I left laundry for a whole week, until the next wash time, when I found it there in the wash machine where I’d left it. I get up from my chair and…before I’ve taken a step I can’t recall why I rose. I walk from one room to another and it’s as if whatever I was doing in the first room never existed. And everybody says, “oh, yes, I forget things all the time too” but I don’t think this is the same. I used to have that kind of forgetting, too, before the stroke and the topamax, and this feels extremely different. It’s a forgetting that feels like that missing part of the word health – big blanks, not as if I’ve forgotten something, but as if it never was. When I am reminded of whatever I’ve forgotten, the sensation is of surprise, almost of discovering something new.
Of course I make lists to remind myself of things. I have a date book. But I forget to check the datebook. I recently missed a doctor appointment because I didn’t remember to check my date book.
My sister thinks I need a Blackberry or its equivalent, something that will ping at me when it’s time to do something important. What do you think? If you were going to convert from paper to an electronic calendar/list keeper/auxiliary brain, what kind of device would you pick, and why?

  1. ancientTechie
    September 3, 2007 at 4:51 pm

    Smart phones can do the job, though they are rather expensive. Since I do not personally carry a cell phone, I use an inexpensive Palm Z22. It’s a great little PDA and has completely eliminated my need for a day planner.

  2. Liz
    September 3, 2007 at 5:05 pm

    That sounds really frightening. And it’s frustrating that one often has to choose between being incapacitated by migraines (or, say, depression) or being more or less functional but still somewhat handicapped in certain ways by medication.
    My mom (who enjoys every moment of her ADHD, if you will, and passed it on to me and my sister) loves her PDAs, and once gave me her old Palm Pilot when she got a new one. I liked the idea, but found I had the same problems with it that I had with paper organizers/datebooks: I’d misplace it, or forget to check it. And then the batteries would run down. And so on. I think I still have it somewhere…
    But I’m intrigued by Blackberries et al. And given that a Blackberry would also be my phone, I feel like I’d be less inclined to lose it. If it weren’t so expensive, I think I’d like an iPhone.
    So, in short, I don’t think I can be much help, but I sympathize.

  3. Adrienne
    September 3, 2007 at 5:58 pm

    Did you lose weight while on Topamax? A lot of people love that particular side effect, myself included. I lost 15 lbs without even trying.

  4. Adrienne
    September 3, 2007 at 5:58 pm

    Did you lose weight while on Topamax? A lot of people love that particular side effect, myself included. I lost 15 lbs without even trying.

  5. September 3, 2007 at 6:58 pm

    I’d be dead if I didn’t have a palm pilot that pinged at me all the time. I can’t tell you how many appointments I’d forget without it. I have a Palm Tungsten T5 which I bought because I read e-books on it and it has a larger screen than most others, as well as the ability to flip it to horizontal view. I also occasionally use it to write ideas down, and show interested parties pics of my handmade books, which the color screen is nice for. But any of the PDAs that have an alarm will do if you just want a calendar/memo/address book. Depends on what else you use them for. Personally, I want my phone to just be a phone and let my other gadgets take care of the rest. There’s functions on my Razr I ain’t never gonna use. I just like that it looks like an OG Star Trek communicator.

  6. September 3, 2007 at 9:36 pm

    Tattoos. If there is something that you absolutely must remember, get it tattooed prominently somewhere on your body.
    More seriously, whichever type of device you choose, I’d recommend something small enough to clip on a belt or pocket, or else you’re not going to have it within earshot when an alarm goes off. That might favor the Blackberries. Also, rumor has it that Apple is going to announce the next generation iPod in a couple of days, and that might have the functionality you’re looking for.

  7. September 3, 2007 at 10:56 pm

    This maybe isn’t an appropriate thing to say, but would you be better off looking for a different drug rather than an auxillary brain? I’ve known a few people left on a particular drug for years by GPs who didn’t know how to manage the problem.
    If Topomax was the stuff my epileptic uncle was on, I’d be falling over myself to find an alternative…

  8. September 4, 2007 at 9:20 am

    Zuska
    I am sorry to read about the side-effects of the drug on you. Dyslexia is bad enough. At least I can generally hazard a guess at spelling and then use a dictionary.
    My auxiliary brain is a Treos 650 phone/PDA. I bought my original Handspring phone-PDA about 4 years ago because everyone nagged me about getting a phone for emergencies. I reasoned that if I just had a phone, I would never carry it with me but the addition of PDA function means that I do. It also can be backed up with a computer so I have my calendar both on my phone and on my laptop and I could print it out if I wanted and pin it up somewhere. I guarantee that you will misplace it and still miss appointments though unless you check it and update it every day.
    It doesn’t come cheap but check ebay for overstocks – if you buy an unlocked phone you can add your own sim card and chose which phone company you want to use.
    Email me if you want to discuss phone-pdas more.

  9. September 4, 2007 at 12:36 pm

    I take an anti-depressant that gives me something very similar, but to a lesser extent, I think. Mostly, I have experiences similar to the first one you described. My doctor calls it “tip-of-the-tongue” syndrome. Sometimes, it makes me so frustrated I want to cry. I’m jabbering along, and I’m about to say the very next word and, it’s gone. Gone, gone, gone. Usually it is a [dear God, it’s happening right now, I can’t bloody think of it]…um…well, an abstract concept-type of word, not something like book or desk or anything like that. Geesh! ANYway, I have gone from being a person who talks non-stop to a person who prefers to write things down. Lord only knows what I’m going to do when I actually start teaching. *sigh*
    As for the auxiliary brain, I don’t use anything myself (perhaps I should), but a friend of mine has an iPhone and he loves it.

  10. September 4, 2007 at 1:09 pm

    mrswhatsit,
    Why not just tell students up front that you have a bit of aphasia and that occasionally you will have to explain things in an amusing manner? Once you do that, you can probably get away with more than you would expect.
    It can become “one of those quirky things that Prof whatsit does.” I’m sure I sound like a moron when I try to speak Spanish because my vocabulary is so limited, but I can almost always make myself understood by using great elaborate explanations for things. The other day I wanted to say “I am addicted to caffeine” (for real, this actually came up) but I couldn’t, so it came out as “Every day I must drink more cups of coffee than God can make.” They got the point, and I got my coffee.

  11. Mangoboba
    September 4, 2007 at 1:36 pm

    Zuska,
    Cognitive confusion sounds really frustrating. I’m sorry you have to go through that.
    I have ADHD, and I own a Blackberry and a PDA, but I’m always forgetting to take them with me, or forgetting to charge the batteries. I found Google calendar works best for me. I work with computers, so I’m always near a computer at work or at home, and you can set it up so it sends text message reminders to you for when you go out.

  12. September 4, 2007 at 2:48 pm

    One device, one device, one device.
    cell phone with PDA for sure as the starting point. on the other hand, I haven’t found my perfect solution yet, possibly because I’m not trying hard enough as I have momentum with the phone co, mental investment in palm/graffiti and I can’t stand those stupid thumb boards.

  13. mackrelmint
    September 5, 2007 at 6:11 pm

    Hi Zuska,
    This sounds really awful for you and terribly frustrating. I’ll bet though, that you’d be great at playing the game Taboo, where you must describe a word without naming it or saying a few common descriptors of it! 😉
    I hope that in spite of the side effects, your medication is worth it in the amount of relief you get from your migraines.
    If it was me, I’d get something that would “ping” reminders at me and that I wouldn’t be also likely to lose. I’d also pick something that had multiple functions such as those other commenters suggested as you might then be more likely to use it and keep it with you.
    It sounds as though you get migraines rather frequently and I’m interested in how you came to use Topamax. Did you/do you also get auras? (My husband’s migraines are usually preceded by a loss of vision in one or both eyes and a flickering or flashing at the edge of the blind spots.
    He prefers not to medicate but the vision loss and the migraines are rather debilitating so I wish he’d consider treatment.)
    I hope you find something that helps from posting here.

  14. September 6, 2007 at 1:37 pm

    Thanks everybody for the advice and sympathy. I’ll take a pass on the tattoo idea, however. 🙂 The Palm Z22 looks very interesting. I was leaning toward the “one device” solution until I had a conversation yesterday with a friend; we were trying to plan a date to meet and she told me she’d have to call me back. Her calendar was in her phone and she couldn’t look at it while she was talking to me. Whoa, I thought, that won’t do. Got to be able to phone and do calendar at the same time. So I’m hanging onto the cell phone and will go for a separate PDA. This gives me two devices to misplace, I realize, along with my glasses, but oh well.
    MrsWhatsit, I really really sympathize with you, I can only imagine the frustration of dealing with this in a classroom. Do you find that people often fill in the missing word for you if you can’t think of it quickly enough and it’s obvious to them? Mr. Zuska does this for me, very gracefully and subtly, and I am always grateful to him for it, it’s a sort of rescue. I don’t know what it would be like having students do it for you, though.
    Mack: I came to use topamax because I cannot take any of the triptan drugs for migraine, because of having had a stroke. The triptans are all vasoconstrictors, thus prohibited for someone who’s had a stroke. Since I get them so frequently, I have to work on managing them and finding alternative treatments for the pain when I do have them. My other main preventatives are petadolex and botox injections, both of which have been very effective. I did used to get auras, much like you describe for your husband, but the botox treatments have stopped the auras.
    If your husband’s migraines aren’t super frequent it may not be worth taking a preventative but he should definitely consider the triptan drugs for aborting migraines when he does get them. They were like miracle drugs to me in the days before the stroke, when I could still use them. If the migraines are very frequent he might want to look into using petadolex which was shown in clinical trials to reduce migraine frequency. It’s a natural product and doesn’t seem to have any side effects.
    Please remember I am not a doctor! But I have had good experience with petadolex and, in the past, with triptans. I’d urge him to consider these. Not all doctors will know about petadolex and it’s only available over the internet, not in regular drugstores. But my neurologist is the one who told me to take it. He should talk to his doctor about these possible options. Suffering from migraine is horrible, and if it can be averted or shortened, he should take advantage of that. The triptans are things you take just when you get the headache, not something you take all the time. So he wouldn’t be medicated all the time.
    I wouldn’t urge anyone to go on topamax unless they really, really, really needed it.

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