My last post was about taking some stuff to a friend of mine and Barb inquired how I managed to do all of that.  I’ve written posts before about not looking disabled so my regular readers know that about me – that I don’t look disabled.  Because of where my stroke was in the brain, it’s very deceiving to the outside world.  Even my mom, who has spent the most time with me and knows my issues better than anyone else said something to me a few months ago and I was like “seriously Mom?”  Due to my cerebellum being injured, I have an intention tremor in my right hand.  I have no strength or range of motion issues.  I look deceivingly healthy, like I said.  Me and my mom were in an airport and I was carrying a drink in my left hand.  She asked me if I could hold her drink (with my right hand).  I said “no I can’t.”  Then she said “just for a second.”  NO I CAN’T MOM!!!!!!  If I would have tried to hold her drink the intention tremor would’ve taken over and my hand would’ve started shaking and people walking by me would’ve gotten doused with coffee.  Intention tremors come out with – intent.  So if my intent was to hold her coffee for her the tremor would have started and I would’ve spilled the coffee.  Not just spilled it, more like thrown the coffee across the airport.  But I’m making it seem worse than it is.  I’m really good at making things seem worse than they are.  The tremor used to be unbelievably terrible and horrible.  Now it’s not.  Gross motor movements like opening doors and windows and stuff like that feel “normal” to me.  Fine motor stuff does not feel normal at all.  Like writing, I hate writing.  Writing is really hard, but I can do it.  It’s even legible.  For a long time, my right hand and arm were not at all functional, now they are. Most people who have a stroke are not this lucky.  Most people have to find ways to do things with one hand.  I remember when I first had my stroke I would read this blog a lot.  I don’t think she writes it anymore but it has a lot of good ideas.

Categories: Brain stuff, Health, Recovery, Stroke stuff

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43 replies

  1. Now that zack is home, I catch myself wanting to say, “will you do…” Or “can you please….” I forget that it’s a while new ball game these days. It’s a learning curve. I hate it.

    • Oh absolutely, definitely a learning curve to this and you’re gonna slip up A LOT but that’s ok. 🙂

      • Yes, Tom used to TELL me to do things like check my left pocket for my keys, forgetting that it would have taken a monumental effort to put them there, so it’s not where I misplaced them. He got used to it, and just does everything himself, which is also annoying.

  2. Amy, I do vaguely remember reading about your intention tremors, but didn’t understand the significance. I’ve imagined all along that your abilities were the same as mine, which would have made moving bags of groceries and flowers awfully challenging. Not impossible, of course.

    When did the tremors appear?

  3. You are both lucky and unlucky with your stroke. The fact that you don’t look disabled is a blessing and a curse. People will ask you to do “forgetting” you had a stroke. Where if you looked like you had a stroke, people don’t expect you to do anything. Both views are wrong.
    Brooke, I face the same thing. Except I’m trying to ask my disabled husband to do what is now impossible for him now or over extending myself to do. As Amy says, it’s a huge learning curve.

  4. Hey. Did I hear someone mention my name? I swam laps Sunday afternoon. I try to get to the pool at least three times a week, but yesterday was cool here and the locker room was chilly. From now on, motivating myself to use the pool in cold weather iwill be a lot harder than when it’s hot. It sounds like my brand of spasticity is different than what many other stroke survivors experience. Mine has never prevented movement on my affected side, just made it much more difficult. And surprisingly, at least it is to me, the more I exercise, it isn’t the case that the looser my affected muscles get, but just the opposite- the tighter they get. So for instance yesterday, the first lap my stroke was strong and even. But by the sixth lap, I had difficulty getting my left arm up and out of the water and my left leg didn’t want to kick, so my stroke was uneven and choppy and it took forever to swim the length of the pool. I couldn’t swim again today if I wanted to, because my left side is stiff as a board. Weird, I know. I have compassion for survivors who choose to sit and not exercise. Sometimes I’m tempted to do the same instead, of waking the spasticity up and incurring its wrath.

    • Jim, I hope you didn’t mind me mentioning your ability to swim – it really impresses me. Having your spasticity behavior sounds awful. I would not say that spasticity is my worst impediment, but it does interfere with my gait and the straightening of both my arm and my fingers. Which is just about everything I want back, so I guess I’m wrong about it not being my worst impediment.

      • Don’t mind at all, we’re all friends here. That being the case, let me me mention that my entire left side is numb. If I drew a line with a magic marke down the midline of my body from the top of my head down the middle of my nose, down my sternum, dissecting my belly button and on down, then up up my back along my spine, back of my head and to the starting point, everything on the left is numb, right is normal. There is no region of gradation, it’s one or the other right down the middle, with all that implies for the lower region. Maybe that’s too much information.

        • Thank you Amy, Barb, and Jim for sharing so openly. I am just 14 months post stroke and nowhere near where I need to be in order to have a good quality of life. And “acceptance” just won’t work for me. It is, however, encouraging to me to hear about all the things you guys can do. Maybe at 14 months you were farther along than I am, so I won’t ever look normal, or be able to walk without a cane, or do any of the things I’m so desperate to do again, but maybe I will because you have been able to.

          • Julia, I have fought the concept of “acceptance” all along, until I recognized that I have just no other choice than being a woman who had a stroke at 52. It was unfair, and it derailed all of my previous plans – beautiful and precious plans – plans that I’m just going to have to work on despite the intervening catastrophe. I’m going to have to work harder than I’ve ever worked before, but recovery is going to be the hardest thing I ever do (Thank God).

          • At 14 months I was still pretty bad, it’s been in the last like 8 months that there’s been a dramatic improvement.

          • Julia, at 14 months, I was fundamentally as I am now, with just a few improvements since then: I walk better without a brace, and with a brace (Bioness now) I walk much more quickly; and I’ve acknowledged that my job was much too difficult for me. And I’ve improved the odds of me completing the Boston Sunday Globe crossword puzzle from zero to even. Capabilities that haven’t changed: except for using my biceps, my arm still has only synergistic motion; fingers still won’t straighten, despite 7 months of Saebo, although every once in a while, I can nearly straighten my first and middle fingers, and move my thumb. Despite my recovery’s slow pace, I continue to have the intention of fully recovering the use of my hand; my leg is not a high priority – with my Bioness, I can do most of what I want, except using stairs without a cane.

          • Julia,
            There are two types of acceptance. One type is accepting the way you are now and not doing anything to improve your condition, and acceptance for the way you are now but still strive to adapt and get better.
            Most of us are in the last group. Looking normal is overrated. Look at the lengths normal people go through to look unique. You’ve got that. No I’m not making fun of you or me for that matter.

        • That must be a very very strange sensation Jim.

  5. Hi Julia. At 14 months I was almost back to 100% recovery, actually better than I am now because the spasticity wasn’t as severe. I say that not to make you feel bad, but to let you know that my recovery has not been one of continuous improvement. There have been ups and downs, forward motion and back. So perhaps if you keep working and striving, a period of rapid improvement might be just ahead. I know, easy for me to say.

  6. I am almost 4 years post. I can walk, but use a cane, but have put my brace away for the moment. At 14 months, I was still a bit of a mess; cognitively I ewas fine and had been back at work a year, but my spasticity in my hand was awful, it hurt all the time and would take tremendous effort to get it open.I had a weekly massage which helped quite a lot, Once I researched Brunstrom stages of stroke recovery; I started doing better, when I recover, it will be because I thought my way through.My balance was still a bit tricky; my left hip was weak and I couldn’t put my weight on my leg, but that’s improved a good deal, at home I walk without my brace and cane, but wear good sturdy shoes. I think I’m about halfway recovered…my spirit is intact and mostly I forget I had a stroke.I can’t do everything I would like to, but I can do a lot more than before. I still have a long way to go, but now I believe I can get there. Marta

  7. Thank you all for sharing. I do feel less alone in all of this with you guys to talk to. However, acceptance of any kind is simply not in the cards for me. It’s just not who I am. I would rather be miserable for the rest of my life than accept what has happened to me. Also, looking normal is NOT overrated. As a society we discriminate against people who don’t look normal, we make incorrect assumptions about them, we deny them employment, and we ostracize them socially. As a Harvard graduate with a genius level IQ, it is incredibly painful for me when people talk to me as though I am feeble-minded because I walk with a cane and my left arm hangs useless by my side. Once I start talking they realize their mistake, but by then it’s too late. I strive to LOOK normal as much as I strive to BE normal, and to dismiss the desire to look normal as overrated or just vain is simply incorrect.

    • I agree with everything you said here Julia. Acceptance is not an option for me either.

    • Julia, I agree that looking different – in a negative, lesser way – is painful; at work, it definitely gave my persecuting coworker a condescending attitude toward me. Every time she wrote a crappy article that i questioned her about, her reply was along the lines of: I don’t know why you’re so confused by this. And she clearly pitied me, which triggers my anger. Plus she’s a moron who rubbed my nose in any mistake I made.

      You and I are clearly different – I would do just about anything to not be miserable for a day, forget the rest of my life.

  8. As we were at dinner last night, Zack said to me, “I am so happy to be alive and be here with you.” My response was, “Me too, and it’s gonna get better.” He said, “It already has.”

    This took place as he sat there trying to see me, nearly cross-eyed, in a wheel chair, with a voice barely loud enough to hear over the supposed background music….dang, it may be that no sweeter words were ever heard by my ears. I don’t know, maybe I am just a selfish beezy. 😉 But, hey, at least I come by it honestly. I am glad he is still here. Even if I have to take care of him, to some degree, for the rest of his and my life. He is worth every bit.

    Trying to accept what has happened YET striving for a better life is what we have to do to not be miserable. “We” as in my family. I can definitely understand how and why others have different views, though.

    I am with you, Julia. I hate that my incredibly intelligent, articulate, loving, kind-hearted, husband is, much of the time, treated like he is stupid. And, it’s all because of the way he looks and talks. But, most of the time, I choose to have grace for people because I think some of them have no idea how to approach us or what to do…they feel “damned if they do and damned if they don’t”, so to speak. And I can sense their discomfort, so I try to diffuse the situation by treating Zack as normal as possible…that way the waiter (for instance) knows that he/she can ask him questions directly.

  9. Wow, Brooke, so Zack was there blurry-eyed from the stroke and you were blurryeyed from your tears. I’m crying here; that is such a sweet story.

  10. Brooke, I envy Zack his equanimity. He sounds like an amazing person. My husband and daughter are very happy that I didn’t die, but I’m not at that point yet myself. Maybe someday.

    • All of my family, including me, is grateful I lived despite my disability; in fact, for the first time, I think, they are actually proud of me, because I have handled it graciously, worked so f-ing hard, and become a productive writer. Newspapers are ephemeral and my writing articles for it never made me a writer in their eyes. I think it’s going to take a published book to convince them for real.

      BTW, I am very glad you survived because otherwise I’d never have been able to discuss with you the things we discuss, topics that make me think more deeply about my situation. I know that my, a near-stranger’s, gratitude for your life doesn’t have any impact on you, but I hope our discussions do.

    • Thanks Julia. I do think he is pretty amazing. However, for obvious reasons, I am fairly biased. 🙂 Our individual gifts, desires, and point of views are what makes these types if discussions so fulfilling. While I am sorry that you are so sad, I definitely respect and understand your perspective, Julia. I will hope and pray that one day you are again grateful for life. Thanks for sharing.

    • Me too Julia, I echo Barbs’ remarks.

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