Glass or Plastic?

I am a creature of habit in the morning. I head to the kitchen, usually in the dark, and I put on the television for news, which also leaves me in the dark. That is for another time. After some coffee, I go back upstairs to the computer. A large glass of water goes with me. Water is heavy. My right hand is useless. My cane is an extension of my left arm, so that hand is occupied. I have no choice. I have to use my right hand, as best I can. Often this means trouble is on the way. I have a pile of of broken glass to prove it.
This morning I opened the cabinet and reached for the safety of plastic. No one cries over spilt water. But I could not figure out how to grasp it. My hand kept reaching for glass. My arm was going in and out of the cabinet. The confusion felt strange. Finally, I picked up a glass and moved toward a water cooler in the kitchen pantry. I placed the empty glass under the spout but was confused about what to do next. I kept starting to put my finger on the button to dispense the water and then pulling it away. Finally it occurred to me to capture the damned water and pour it into plastic. How is that for clear-headed reasoning?
I awoke from my haze and went on my way. I take note of such unexplainable events, but I do not panic. Why? I am dispassionate, as if I was witnessing the actions of another. If I were paid by the hour for separating from reality and dwelling in denial, I would be getting g wealthier by the day. These experiences are increasing in frequency. I ought to be freaking out. I make my living with my mind, having given up on my body a long time ago. But when I am sitting at my desk at home, putting on my glasses when the phone rings because that seems to be the correct response, I am mildly amused.
I am too old to cry, so what choice do I have but to laugh? I know folks who routinely do cognitive testing. I have no reason to do that. I have no interest in tracking my cognitive deficits because there is noting I can do about them. In this house we laugh at every other form of adversity. Why should this be different? Maybe if I end up in a motorized chair, I will drive into a wall.

43 Responses to Glass or Plastic?

  1. Joan L October 15, 2014 at 11:56 am #

    Yesterday I ran over my seatbelt on my power chair and got it wound up in the wheel and stuck! After many expletives, I did laugh. When the cup of hot tea falls out of your hand and all over you, not so much. I definitely relate to your out of body feeling. Sometimes it’s just as well. But, still smilin’.

    • Richard M. Cohen October 15, 2014 at 12:26 pm #

      It is the out of mind experience that is getting to me.

      R.

  2. Louise October 15, 2014 at 2:08 pm #

    A lot of people do some version of that phone ringing/glasses thing and laugh it off. I know that doesn’t change that you did it, but the undiagnosed laugh it off as I used to.
    Stressing and worrying make the cognitive stuff worse. I refuse all cognitive testing too. I try to do some data gathering things when asked to help others, if not myself. But the cognitive testing is just too emotional and potentially devastating to me, I don’t earn my living with my mind ( or in any other way) but I earn my desire to live with it. You still have a good mind, Richard.

    • Richard M. Cohen October 15, 2014 at 3:48 pm #

      Thanks. I am not obsessing. I just worry a bit about tomorrow.

      R.

  3. Wendygilmo October 15, 2014 at 4:42 pm #

    Along time ago before I had MS I was at a sorority picnic where The big sisters had to reveal ourselves to our little sisters.
    The big sisters wore paper bags over their heads as to hide their identity. Once you found your little sister you were to take a picture together, one picture with the Paper bag on covering your face, and one picture with the paper bag off revealing your identity.
    We then took a group shot with all the big sisters with the bags over their heads and all the little sisters with no bags. My friend turned to me and said,”were you smiling as they took the photo of us with her bag on her head

    • rm cohen October 16, 2014 at 10:56 am #

      I think I am missing somethjing here.

  4. Wendygilmo October 15, 2014 at 4:45 pm #

    Here’s the rest…my friend asked me,”we’re you smiling underneath you bag??” Of course I was smiling from ear to earr!!!!

  5. Christopher October 15, 2014 at 4:53 pm #

    When tomorrow comes, it will be too late to implement some design from the day before. And then it will be concerning the next day after that. It’s all cyclical and without a logical pattern (which really sucks because it’s so aggravating).

    Because the neurons are leaky at certain points others have to take up the slack, which causes stress at those points too. Because of the tense and overworked environment the brain shrinks to conserve energy, and slow down a complete failure. When the brain shrinks, non essential functions are set to a default pathway (the dumb waiter as opposed to the super highway). You could look at it this way… your brain is acting exactly as it should in light of your condition. The guy in that chair is not you–he doesn’t exist, yet.

    I’m not telling you things you don’t already know, sir. But I know there’s a lot of people who read this blog, and I’m hoping my experience helps.

    • rm cohen October 16, 2014 at 11:01 am #

      C:-

      I know less than you think. I was trained to ask questions, not to provide answers. Your comments always are appreciated.

      R.

  6. Linda Lazarus October 15, 2014 at 6:13 pm #

    Cognitive issues with me come and go—like many other symptoms I have. Thinking problems are distressing to me….such a loss of who I was. But, I am happy that things change all the time for me. At the moment I am having swallowing problems but my balance is particularly good. I would be most disturbed if the variety of symptoms did not shift.

    Sometimes when I am driving home, within a half mile of the house we have lived in for 40 years, I suddenly do not know where I am. I have learned to hang on and think it through. So far, I always end up at home.

    Thanks for this particular post. These issues are particularly frustrating.

    • rm cohen October 16, 2014 at 11:04 am #

      You are right. Staying calm is critical. A frenetic response only aggravates the problem.

      R.

    • rm cohen October 16, 2014 at 11:04 am #

      You are absolutely right. Staying calm is critical. A frenetic response only aggravates the problem.

      R.

  7. Bill Garcia October 15, 2014 at 7:45 pm #

    I fend off cognitive testing myself. I don’t want to see in writing what I already know and perhaps see worse. My cog problems come and go. I recall one day I was furious because I could not find the aluminum foil. My wife hollered from the den its right there in the pantry where it always is. Well that should have been my cue but it wasn’t. My rant went own. Finally she came to the kitchen and alarmingly said your looking in the refrigerator. As for me, I was clueless.

    Or when I put the bread in the refrigerator and the mayo in the pantry and thought nothing about it until one of my sons pointed out my blunder in a only a son can do.

    Laugh at your gaffs Richard we all do. Take joy in yourself. We have too much to worry about find the humor where it is.

    Your mind is fine Richard. We all think about tomorrow but live for today. So, live for today and don’t worry about tomorrow.

    Respectfully,
    B

    • rm cohen October 16, 2014 at 11:08 am #

      Bill-

      You are wise.

      And as confused as I am. Thank you.

      R.

  8. MB October 15, 2014 at 7:52 pm #

    I asked a doctor what the purpose of cognitive testing was and he said it was to track any changes that may occur in my thinking. Since I had never asked the dermatologist to track the progression of my forehead wrinkles, I decided I’d pass.

    Your water situation sounded familiar, but unless you were fetching water for your parched family, I’d suggest blowing it off (said the queen of denial).

    (I solved the “carrying water with a wonky hand problem” by getting a countertop water dispenser for my home office.)

    • Richard M. Cohen October 16, 2014 at 7:29 pm #

      I have blown it off.

      R.

  9. Pat Harper October 15, 2014 at 9:15 pm #

    As a fellow, how do I phrase it…MS patient, I ask, with all respect and deference, who says that nothing can be done? I plan to fight as long and as hard as possible. Understand, I have no illusions, but I do believe in data, metrics and working the brain and trying workarounds. At least, to my knowledge, it can’t hurt. For example, taking up some sort of musical instrument, however rudimentary, is exceptionally good exercise for the brain. Don’t care if you couldn’t carry a tune in a bucket. He helps the brain forge new pathways around damaged areas. And as a side benefit you can really, really annoy the neighbors. Please get tested then do things then get tested again. Track progress. If you can’t reverse things, slow the decline. I know you been fighting this fight for a long time and yes that sucks. We’ve never met but I’m pulling for you and I’m pulling for me too. Be well. Kick some ass.

    • rm cohen October 16, 2014 at 11:14 am #

      I guess I have only so much patience with those who have information and no real idea of how to use it. I am freaking doctored to death and don’t want to go there.

      Your advise is probably sound.

    • Richard M. Cohen October 16, 2014 at 7:30 pm #

      Amen.

      R.

  10. Betty October 15, 2014 at 11:30 pm #

    The fact that you walk down to the kitchen, get coffee, and then trek back upstairs to work is commendable. This disease pushes us hard physically and mentally even in our sleeping hours. Give yourself a break. It’s ok to be just damned tired. When you hold the water glass to your ear to answer the phone you might want to consider the testing.

    • Linda Lazarus October 16, 2014 at 8:30 am #

      Oh Betty, your response made me laugh outloud! Thanks for the hearty laugh with that visual.
      I am always wary about what happens to the information from cognitive testing. Like all the people here I have found workarounds to MS problems…but I do not want evaluation when certain symptoms are active. That should be a cautionary tale. I am giving a generalized red flag because, even here, I am aware of what I put in print.

      Again, thanks for the visual and the large laugh Betty. I wish I could draw! A book of MS moments drawings would give us all a chuckle.

      • Betty October 16, 2014 at 9:49 am #

        Indeed; and trust your instincts. Never admit to falling, or “enjoying a glass or two of wine at the end of the day”. They’ll have you in a chair and headed for AA. I’ve had neuro testing 2X, and ten years apart. I did better the second time around after brushing up on ancient history. I think they use the same tests whether you’re 29 or 79. WE should re-write the exams!

      • Richard M. Cohen October 16, 2014 at 7:32 pm #

        I will buy the book.

        R.

    • rm cohen October 16, 2014 at 11:15 am #

      I will be topop busy gulping water from the telephone.

      R.

      • Betty October 16, 2014 at 11:33 am #

        LOL!

    • Richard M. Cohen October 17, 2014 at 8:30 am #

      I use the water glass as a phone.

    • Yvonne October 17, 2014 at 1:43 pm #

      Betty-That was the funniest visual. Thanks!

  11. Sandy October 16, 2014 at 12:16 pm #

    I have these episodes as well and the thing that scares me most is the coming day when they link up and become an everyday – all day thing.

    I have tried to retrain my brain and use simple techniques to establish new pathways for my brain. Something as simple as using my other hand for the mouse or to eat and drink with, write with, etc. Word games, reading about a topic I know nothing about, learning, and of course my favorite, Jeopardy. I tell myself these all work.

    Having said that…if I were you on that morning…I woulda skipped the water and gone right for the red wine. I have an electric corkscrew now…part of my adaptive arsenal dontcha know. Plus a wine glass is so easy to hang on to.

    Effing MS.
    Sandy

    • Richard M. Cohen October 17, 2014 at 8:33 am #

      Please do not expect the wo rst. And exercise your brain. Use it or lose it.

      R.

  12. Jan October 16, 2014 at 6:32 pm #

    The answer: neither.

    Try metal… ice water tastes especially good to me when I’m writing at my computer with my coffee holder thing close to the monitor. It’s made of metal and is “Spirit Wear for sipping,” I’ll call it–my way of showing college spirit for my son–I don’t wear shirts from another college or even mine actually. (I’m sure you can find “I love NY” and the like).

    I take it about everywhere (except the kitchen table–I then use a more civilized glass). It is thin enough to fit the cup holder in my car, has a lid with an easy-to-sip spout (not messy or annoying like some coffee holders), is not glass (not breakable), and has more weight than plastic (which could easily dump and ruin my keyboard). Voila!

    Cognitive tests? I don’t remember everything my family mentions or asks but, interestingly, remember everything I need to do for work. Hmm. So if you’re writing, I think that’s good enough. Works for me.

    …and I think it’s okay to cry at any age, btw.

    • Jan October 16, 2014 at 7:26 pm #

      P.S. My holder has a two-inch rubberized band around the center — makes it very easy to grip and hold either very cold or very hot liquids. Also, it is more narrow than some in circumference — also easier to hold.

    • Richard M. Cohen October 17, 2014 at 8:35 am #

      I don’t remember whether or not I’ve had cognitive tests.

      R.

      • Betty October 17, 2014 at 11:40 am #

        good one.

  13. David October 17, 2014 at 11:27 am #

    Its OK to cry but you cant always make it happen. We are all afraid of something , MS just makes it constantly.I try not to compare myself to what I was, I always see weakness.
    If I see myself as I fight on with this monster, then I see strength.We should all be concentrating on what we still can do, there is upside there.I am still trying to laugh at almost everything as you do.

  14. Yvonne October 17, 2014 at 1:50 pm #

    I was curious about the deterioration of my cognitive abilities and took a couple test several years ago at different intervals. Now, I don’t want to compare the 2010 Yvonne to the 2014 version. I’ve mourned my losses and moved on. Don’t need the documentation to know what’s happening.

    • Richard October 17, 2014 at 4:52 pm #

      Exactly.

      R.

  15. Brian Melton October 17, 2014 at 2:23 pm #

    I just had a test done at Stanford. I was so pissed after they read me a story and wanted me to try and recall it. I couldn’t remember shit and I half assed it the rest of the test. So my neuro gets the results and the said I FAKED it!ugh what a waste..

  16. Betty October 17, 2014 at 7:46 pm #

    My two cents: Consider that the neuro psych tests may need an upgrade. The internet, and “normal” stressors in this century have changed the way we use our heads. In the last 15 years I have gotten lazy relying on the internet for checking facts-on-the-fly; for recall, calculations, analysis, a schedule, reminders and more. Haven’t you? It’s too easy to not ask my brain to dig too deep. MS aside, this all has to affect the test scores; and not to mention the down side of a 6 hour test in a windowless room w/ a humorless proctor, and no caffeine allowed. No wonder I didn’t remember Cleopatra’s lover 48 vs 41 BC. Seriously?

    • MB October 17, 2014 at 10:54 pm #

      Richard Burton? 🙂

      • Betty October 18, 2014 at 9:31 am #

        good one. 🙂

  17. Yvonne October 18, 2014 at 10:45 am #

    ROFL at Richard Burton. Perfect MS answer 🙂

  18. Ken October 18, 2014 at 8:51 pm #

    “This morning I opened the cabinet and reached for the safety of plastic. No one cries over spilt water. But I could not figure out how to grasp it. My hand kept reaching for glass. My arm was going in and out of the cabinet. The confusion felt strange. ”

    Richard, this is the first time I’ve heard a description of this sort of “cognitive confusion”,it has happened to me several times, in my case, trying to take something from the cupboard, and “the hand” constantly reaching out to the wrong shelf ? it’s nuts, you watch in disbelief as you keep trying.

    it’s “the hand” in these cases, causes it sure a hell doesn’t feel like I’m in control of it.

    like you say, Laugh, what else is there.

  19. Meredith Chemerika November 9, 2014 at 12:50 pm #

    Hello Richard Good Morning from not so sunny Lions Bay , BC. I just have been following the idea of relabelling MS to dementia, what to you think of that idea? This has been noted in ms research in london. WHAT SAY YOU? I was told by a ms nurse that ms societies won’t discuss SPMS because one mustn’t alarm the newly diagnosed. So you can imagine how cognitive rumblings are avoided by those in the know. I have no faith in our so called experts……………………………..love your ramblings. Meredith