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September 27, 2013

31

Ataxia

by Amy

The first time I wrote about ataxia it was so bad I would sit on my hand.  Maybe I had to sit on my hand because of the intention tremor.  It was a combination of both I think.  Remember that the 1st time that I wrote about this I didn’t know that I didn’t know anything.  I thought I knew something.  I was wrong.  I don’t admit that I’m wrong a lot so mark this date.  Ataxia is a problem with coordination of movements.  I don’t really have a big problem with it anymore but right after the stroke Oh. My. God.  It was bad.  This was the main thing I think that made me look so freakishly bad to the outside world.  I had ZERO control over my movements.  Walking was ridiculously bad.  Because of the ataxia, my right leg would just do its own thing before landing in the correct spot.  I had to concentrate like hell in order to make my arm and leg on the right side of my body do what I wanted them to do and everything I tried to do took like 5 hours.  It’s not that my muscles DIDN’T work, they didn’t work CORRECTLY.  A lot of stroke survivors have a limb that doesn’t really work, doesn’t function at all.  That wasn’t my problem.  My problem was that those muscles worked TOO much.  They were just crazy.  Those muscles were insane.  Now they’re sane.  Kind of.

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31 Comments Post a comment
  1. Brooke F.
    Sep 27 2013

    hah!! Yes. But I prefer 17 hours. It takes Zack 17 hours to do ev-ry-thing. poor guy. He is totally right there…just where you are talking about. you give me so much hope!! Yay for you!

    Reply
    • Sep 27 2013

      He’ll get there. It won’t be anytime soon but he’ll get there, especially if he works directly on the brain with meditation!

      Reply
  2. scottg
    Sep 27 2013

    That’s the main problem I had in long distance walking. After several miles the brain lost coordination with the leg, and leg became a wet noodle, whipping around wherever it wanted to. When I walked down the street, I looked like a broken puppet. Extremely embarrassing. It got downright dangerous stepping off curbs and on rough spots. In public areas it was one step at a time but for me, the worst part of all was the concentration it took. Nobody who hasn’t had it knows the unbelievable and painstaking concentration it takes to try to move even one step correctly, and the heartbreaking frustration you get when it still makes you look like an idiot. If ever I wanted to cry during my stroke, that was it. But it’s over now and over forever. Thank god.

    Reply
    • barb0803
      Sep 28 2013

      Scott, congrats on pushing through all that. Sounds like it would have been easy to stop.

      Reply
      • scottg
        Sep 28 2013

        Thanks, but it wasn’t all bad. I ate at Hometown Buffet everyday at the end and piled on the deserts big time.

        Reply
        • Sep 28 2013

          I hope there were hot fudge sundaes involved.

          Reply
          • scottg
            Sep 28 2013

            But of course!

            Reply
    • Sep 28 2013

      If you ever wanted to cry? I think I cried everyday for 2 years.

      Reply
      • scottg
        Sep 28 2013

        I did cry once. I was living in North Carolina at the time and my parents had to bring me to California to take care of me, so I lost everything: Car, possessions, great job, etc. Came to CA with carry-on luggage. But I really lost it when I had to give my cat away. Bawled for four hours and I’m sure the whole hospital heard me.

        Reply
        • Sep 28 2013

          Wow……..

          Reply
        • Sep 28 2013

          I was in the hospital for two months and I missed my cats so badly that I would just cry continuously about it. There were times when I imagined that I was feeling their fur against my face as they tried to dry my tears. I can’t imagine giving up a cat. I am so sad for you, Scott. My two girls have been a critically important part of my recovery. I was afraid they wouldn’t know me when I came home finally because my movement was so different and I was in a wheelchair, but they ran right over to me and began to purr. For the first few months when I was sitting almost all of the time I had at least one feline companion with me at all times. It almost seemed like they had organized themselves to take shifts with me. My daughter told me that they used to take turns sleeping on my bathrobe when I was in the hospital so I guess they missed me as much as I missed them.

          Reply
          • scottg
            Sep 28 2013

            I’m a loner, so cats are my family, my friends, and everything that’s meaningful to me. I had my first cat, Tavi, when I was 35, and that was the first time I ever felt love in any form. When she died, I never knew I could hurt so bad, and even today I can’t believe how much it still hurts. But life goes on. I know this sounds strange, but cats (and dogs) will probably always mean more to me than humans.

            Reply
            • barb0803
              Sep 29 2013

              I can understand that .. Cheerful, loving, and devoted. How often do you find that in a person? Pets are sometimes needy and selfish, but those are their only bad characteristics. Even their bad breath isn’t as bad as people’s.

              Reply
            • Sep 29 2013

              My first cat, Born Free, taught me about unconditional love. He was a stray who wandered into our yard one day and never left. He truly was my best friend, and his death left an enormous hole in my heart that, 55 years later, is still there. Not quite so big, but I still miss him. My father would jokingly say that Val, his dog, was the great love of his life, and my mother would jokingly agree, but I think they both knew that it was true. He once told me that the day he had to have her put down (she had metastatic melanoma) was the saddest day of his life and I think it was. My friend Lenny had a complete breakdown when Fifi died, but when his wife died he just started dating. You are not so unusual Scott. The truly weird people are the ones who haven’t loved outside their own species.

              Reply
  3. Sep 27 2013

    But isn’t your brain just as crazy/insane as your muscles were?

    Reply
    • Sep 28 2013

      Not quite, almost. but not quite.

      Reply
  4. Sep 27 2013

    I can usually hit the broad side of the barn but not grab the handle to open it. If I over exercise it, I have no control. After 14 months post stroke, walking one step still takes total concentration, but I’m getting there.

    Reply
    • Brooke F.
      Sep 28 2013

      Jo, was your stroke in your cerebellum, too?

      Reply
  5. Clairese Russell
    Sep 28 2013

    I. too. am getting better after15 months.

    Reply
  6. Jim Sparks
    Sep 28 2013

    I had a right-hemishere, hemorrhagic stroke, so had left side neglect and ataxia. The ataxia only lasted about a week, but while it was present, my left arm would lift up off the bed and wander around. The doctors told all my visitors to stand on my left in order to help me fight the neglect, so I had several physical encounters with my visitors that first week. My wife, only half-kiddingly, accused me of feeling up the women. I told her I didn’t why the ataxia seemed to be more active in the presence of boobs, it was just one of the many mysteries of stroke. She was skeptical.

    Reply
    • Sep 28 2013

      Lol that’s a great excuse!!

      Reply
      • Jim Sparks
        Sep 28 2013

        I hope you are not staying in and blogging on a Saturday night. You are too young and pretty for that. Tell me you have plans for later on.

        Reply
        • Sep 28 2013

          Awww wow thank you that’s incredibly sweet! I cannot tell a lie. Well, I can, but I won’t. 🙂 No, I don’t have plans for tonight.

          Reply
    • Sep 28 2013

      Jim it sounds like you and I had a similar stroke (right side hemorrhagic) but I didn’t have ataxia. I was just pretty much flaccid sat first. I had left neglect which scared my husband worse than me because I wasn’t aware of the problem. But at about 3-4 weeks, the neglect just went away much to everyone’s relief.

      Reply
      • Jim Sparks
        Sep 29 2013

        Hi Julia. I didn’t know til much later when I did some research that hemorrhagic strokes have a higher mortality rate than ischemic. That was information I’m glad I didn’t have at the time. The area of my bleed was the size of a marshmallow, they told my wife. The ataxia went away in about a week. The neglect lingered a bit longer, but it was gone after about six weeks.

        Reply
        • Sep 30 2013

          Regular marshmallow or mini? Mine was a large regular marshmallow. At the time, the high mortality rate for hemorrhagic stroke was fine with me, There is still a large part of me that wishes I had just died. It would have been easier for everyone.

          Reply
          • Jim Sparks
            Sep 30 2013

            They didn’t specify any more than that and at the time my wife, Polly, wasn’t too interested in those kinds of details, and I was too out of it to care and never followed up. The effects of my hemorrhagic stroke followed Peter Levine’s description exactly: Severe initially, but rapid and extensive recovery. It sounds like yours unfortunately didn’t follow that script. I’m sorry. Like Polly, I imagine your loved ones are glad you are still with them, even in a slightly different form.

            Reply
  7. Jim Sparks
    Oct 1 2013

    Talking about ataxia made me remember one of the therapies my PT employed when I first got to inpatient rehab. She would put numbered rubber markers down on the track between the parallel bars and give me instructions on which ones to touch with my affected left foot. At first it was very difficult. My left foot would wander around and when I saw that it was approximately over the correct one, I would drop it. I failed most of the time. But it evidently was effective, because toward the end of my four weeks there, though, this was the easiest exercise I did, and she finally discontinued it.

    Reply

Trackbacks & Pingbacks

  1. Trunk Ataxia – mycerebellarstrokerecovery
  2. “Why do you go up with the good and down with the bad?” – mycerebellarstrokerecovery

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