To Lose One’s Mind

When MS setbacks suddenly appear, many of us know the churning stomach and weary whisper that hoarsely says, here we go again. We buckle our emotional seatbelts and prepare for the rough ride. On some basic level, though, a calmness comes quickly. We are inured to setbacks, at least until we are not. For me, calm crumbles as I realize that cognitive impairment is leading the charge and coming right at me.
I have grown used to reaching for words, but now, even after the words are captured, they do not come out right. What I hear is not necessarily what I am trying to say. It is startling, as if I am listening to someone else. At my self-important best, I fancy my self a wordsmith. Meredith no doubt would substitute other words. Imagine how threatening this new adventure is. I am told a medication may be causing this roadblock, and it is easily reversible. We will see. Patience. I don’t think so.
I have grown used to forgetfulness, occasional conceptual mishaps like putting on glasses in response to a ringing phone. Nobody else notices my verbal missteps, but they scream at me. Damn. This is not where I want to go, though Kurt Vonnegut wrote that, ““Bizarre travel plans are dancing lessons from God.” Sometimes the chuckle does not come easily or at all.
George H.W. Bush’s Vice President, Dan Quayle, told us “What a waste it is to lose one’s mind. Or not to have a mind is being very wasteful. How true that is.” The statement reinforced that truth by substituting the word, lose, for waste, not to mention speaking incomprehensibly. There is nothing funny at work here. A loss of brainpower is catastrophic for anyone and is my worst -case scenario with multiple sclerosis.
You know, MS is not as much fun as it used to be.

26 Responses to To Lose One’s Mind

  1. Brian March 1, 2015 at 9:52 pm #

    Difficult topic, Richard, even more so to live.
    Loosing your ability to walk or to not be able to view the world are true disabilities but the loss of your mental faculties is catastrophic. The blessed curse is being able to recognize the door is closing and to do as much good as you, me, us are able to before the light dims.
    I love laughing at life, too but some topics cut too close to the bone.

    • Richard M. Cohen March 2, 2015 at 6:48 am #

      Yes they do.

      R.

  2. yvonne March 1, 2015 at 9:55 pm #

    Wow. Once again. Perfect timing to read this as I am having difficulty explaining this phase. People want to relate it to age. I understand cognitive abilities diminish with age but MS seems to rob us of the ability to communicate succinctly. It not that it’s not there . It’s that retrieval of a word or thought inhibits my ability to contribute to a conversation that I am already in and suddenly I am unable to support an idea I was just vehemently defending. Suddenly I am lost and babbling trying to remember where I was going and desperately trying to gt back. I tried to make a deal at the onset of this damn disease: everything but my brain. Guess the universe wasn’t listening or maybe it split the difference and gave me 30 instead of a lifetime. What was I talking about….

    • Richard M. Cohen March 2, 2015 at 6:52 am #

      I think all of us make our Fayarian b argains. Ore try to.

      R.

  3. MB March 1, 2015 at 9:57 pm #

    That’s my biggest MS fear, too, so I do crossword puzzles, play word games involving synonyms and antonyms, solve basic algebraic problems in my head, etc. Last week I bought a program to learn Russian just to keep the synapses firing!

    You often encourage your readers to remain vertical for as long as possible and then beyond what seems possible. The same could be said for the power of the mind. Our best defense against cognitive decline is engaging in mental calisthenics often.

    Udachi! (Russian for good luck—haha!)

    • Richard M. Cohen March 2, 2015 at 6:56 am #

      Thanks, comrade.

      R.

    • Richard M. Cohen March 2, 2015 at 7:08 am #

      Thanks, comrade. And good luck to you.

      R.

  4. Yvonne March 1, 2015 at 10:16 pm #

    MB- I have games downloaded like Elevate and play everyday. I also love Mahjong and Word Search. We can not stop what MS is going to take but it helps me feel like I’m using whatever it leaves me with to the best of my ability.

  5. Jan March 2, 2015 at 10:02 am #

    Previet, MB! (Learned that Russian greeting when my boys were in kindergarten). In addition to other reasons, cognition is likely also why I embrace my part-time copywriting. Keeps my mind going forward (esp. when I admit to spending a harrowing two days searching the house for my dental night guard, a necessity when grinding my teeth at night from pain. “Where are my teeth?!!” I looked everywhere, all the usual places. I even searched through the garbage, just in case. Who loses that, in the house yet? Lost out on precious sleep. It’s cracked, but usable. My husband found it behind a table. Oh yeah, I had changed a light bulb there early one morning. MS cognitive thing? Heck, I’ll just call it empathy for those who have to wear dentures. Denial works well for me at times.)

    Most of Feb., with my worst-ever MS attack in 10 years, I managed (see pp. 40-41 of “Blindsided”). And, on p. 161, “Coping shines brightest when it comes easy.” Aha, that’s where I got that quote. A while ago, a Christian friend kind of scoffed at me for mentioning that, but regardless of where one derives faith and strength, it does make sense to me.

    Perspective. Grit. Perseverance. Winter doldrums with crummy weather hitting about everyone, emotionally or physically (or both): on to rereading the ALS chapter about Denise from Strong at the Broken Places (and no, I don’t get royalties for mentioning Richard’s books! But it’s his blog, so it’s only fair). It’s because we will soon visit someone from our past wedding who has that, and I want to refresh my knowledge, to better understand. Wow. A lot of people go through a lot.

    I am determined to NOT BE MARGINALIZED by MS or anything else. Even if I have to take a store scooter, I am “still me.” And the more “me” I stay, the more others will learn, accept, too, I think. While I’d much rather be doing other things (wouldn’t we all?), I will work with what I’ve got to the best of my (rather varying) ability. Whatever that may be. And this is not about me–but about faith and hope and a purpose beyond myself (that I may neither fully understand nor always like).

    • Jan March 2, 2015 at 10:29 am #

      Are my replies as long as Richard’s posts? And did I not say I would try to not do that? I can’t recall…

      • Richard M. Cohen March 2, 2015 at 12:41 pm #

        It is the quality of you replies that matters, not the quantity of words. You are great. The fact that we could make a full length motion pictures based on your replies is a different mater

        Don’t worry.

        R.

  6. Jan March 2, 2015 at 1:43 pm #

    Funny, thanks for cutting me some slack, Richard. (My husband would likely agree with your motion picture comment: all good inspiration to be short. Truth be known, I even edited it down to half! I’m way better at brevity for work, thankfully).

  7. Louisa March 2, 2015 at 8:11 pm #

    Ugh, Ricahrd. The cognition dysfunction is my second biggest fear. My first is please not my kids. Tonight they have collided as my precious , college age son just called to tell me that he failed his return to play ( sports) concussion impact test. And I went right to that dark place. Could this be MS related? I am so grateful for your blog. I could never say it out loud to my husband or a friend. But here the truth spills out. Funny, I, like you, am I “non beleiver” but at this moment I worry ” did I just put something out there in the universe?” I am going to insist that my baby will repeat the test and be fine and you will stop the meds and be fine as well. I actually feel pretty sure yours is the meds. I have seen so much of that with my parents and friends’ parents. We’re getting older and medicine has stronger and different effects. My son will pass his retest and return to play. ( that’s my universe thing again).

    • MB March 2, 2015 at 9:39 pm #

      My biggest fear, too, Louisa and I can’t bring myself to say it either. Stay strong and try to keep your thoughts positive regarding your son. Motherhood isn’t for the weak, is it?

  8. Eliz March 3, 2015 at 10:58 am #

    So interesting that based on your post I just connected my bursts of anxiety with cognitive frustration. It should have been crystal clear but it wasn’t. I only take a very low dose of anti-anxiety medication at night to sleep and help with the spasticity and horrible leg cramps at night. I also find myself having to take one when I am tasked with something that is challenging to me.

    I had to complete a long important list of ten questions yesterday and I was a ball of anxiety. I spent hours doing something that would have taken 30 minutes and I spent significant time writing down words that were not the word I wanted but close, and then looked up synonyms of those words to find the word I really wanted.

    Cognitive dysfunction=Massive frustration. Hate it.

    Luminosity website is also a good resource for brain exercise but can create anxiety because it is timed. I do it when my mindset is positive. When I’m not, it’s just depressing to see how much function I have lost.

  9. Sandy March 3, 2015 at 9:31 pm #

    This is the part of MS that I hate most. Falling down – hell I am getting good at it. Tripping in public…love it. You name it – I do it well.

    Now word finding…processing slow down – forgetting familiar faces – These Piss me off. As a citizen activist I helped rewrite state environmental laws and conservation policy. I KNOW this stuff…still do. So why can’t I remember that a comb is a comb and a shoe is a shoe? My husband will leave the house for an hour or two and when he returns will ask me if anyone called while he was gone. I cant for the life of me remember.

    In my research I learned that language must cross over the top of the brain from the place where it is stored to the place where spoken language comes from. I had a nice bright lesion show up there on an MRI once so I had to check it out.

    Anyway, what I learned was that I needed to build new pathways for the words to travel. The best way to do that is to use your brain for not only speaking but also using my “other hand” Something as simple is using your mouse or fork in the other hand can create new pathways in the brain. It helps with the connections between the hemispheres. Also using two hands for tasks like knitting or crocheting, video games, cooking, well you get it.

    So put your wine glass in the other hand and relax…
    Sandy

    • Betty March 4, 2015 at 9:09 am #

      Sandy,
      I’m with you!

  10. Louise March 4, 2015 at 9:59 am #

    One more little comment because it’s so germane. I had what you are describing happen to be for a short time 8 years ago. I just said something completely different from what I meant. The length of the sentences was correct and they were sentences, but the nouns and verbs were changed. My point is, it went away and has not returned. It may someday be back but 8 years is a long time and a lot of conversations. Hang in there, Richard.

  11. Linda March 4, 2015 at 2:54 pm #

    This subject of loss of brainpower is so pertinent to my dilemma. I find my discombobulated thoughts and words beyond frustrating. Most frustrating, is the reaction from friends and family when I express my concern. Either I am told that I have always been that way or it happens because of my age. I suppose those thoughts are my loved ones trying, (in their own minds), to make it okay. But that angers me!
    I know it is what it is! I hate it!
    It can be such a lonely journey. Richard, thank you for giving those of us who feel so misunderstood, a forum to air feelings. That is powerfully validating.
    Thanks to all who share. That’s a gift that I get to unwrap everyday. I relish this communication.

  12. Jan March 4, 2015 at 7:43 pm #

    I, too, as well. Thank you.

  13. David March 5, 2015 at 11:04 am #

    When a financial company said past performance is no guarantee of future results ,they were talking about a mutual fund they were selling.

    I hope we can use this sentiment in our Hope now

    I cant walk now but that that doesn’t mean that I wont walk in the future,O K,I buy that idea!

    Keep hoping!,All of us!

  14. Betty March 5, 2015 at 1:38 pm #

    There are many reasons to be hopeful. This is one.

    Myelin synthesis. Check it out, and hang in there everyone.

    http://ht.ly/JXUb5

  15. Henriette March 5, 2015 at 9:27 pm #

    In my humble opinion that might be your best blog piece ever. Wow. You said it. Thanks.

  16. Colleen March 5, 2015 at 11:11 pm #

    You took the stuck words right out of my mouth. 2 years into my MS diagnosis and for me this is the hardest part. I struggle with words and thoughts… Most don’t notice, but it cripples me when it happens. I replace words without realizing it. Forget what I am saying mid sentence (especially fun during presentations that used to come so naturally to me). Believe it or not, that is the biggest reason I decided to pursue a stem cell transplant. Losing my words and thoughts we more frightening then any other attack this beast threw at me. But, I type this from my Chicago hotel room as I get ready to start the mobilization process in 3 days. God willing I won’t progress beyond this and my words and thoughts can remain my own.

    Colleen

    • Eliz March 6, 2015 at 10:04 am #

      Did anyone see the woman and her neurologist on the Today show yesterday? Because it’s MS awareness week. Eight years ago she had numbness, etc., got diagnosed, now is finger crossed doing well. Do any of you get envious that someone else found a magic potion and the rest of us haven’t?

      I then saw my neuro on the local news with one of his patients who is on with a patient starting Lemtrada this week. How do you know what to do? What will work for you? Is it a process of trial and error? The cognitive aspect makes me more timid too. I’m afraid to just say, “what do you think, considering your long history of treating patients, is the best for me?”

      This is so complicated. Richard, do the little ice spikes for the cane work?

  17. Sue March 9, 2015 at 9:00 pm #

    I bought cocktail napkins several years ago with a quote “Of all the things I’ve lost, I miss my mind the most….” Ozzy Osbourne