Documentation

When I had the stroke, I looked BAD.  Real bad.  Now I look good, real good.  I have nothing in the way of pictures or recordings to show what I was like back then.  Nothing.  I wouldn’t allow my picture to be taken and I most definitely wouldn’t have allowed someone to videotape me.  I have no samples of my writing or what my voice sounded like back then.  And I wish I did.  For a bunch of reasons.  I wish that I could prove to people the amazing transformation that I’ve made, but I can’t.  No such luck.  Now when I try to explain what I’ve been through and what happened people look at me like I’m nuts.  But, I did not want that period of my life to be documented in any way.  I was extremely vulnerable then and it would’ve been downright cruel for someone who was thinking normally to suggest to me that I should document what I looked like and try to take my picture or record me.  But now almost 3 years later I wish that I had something to show for it all.  When people learn what happened to me and what I’ve been through, they’re in absolute shock.  So, document the crap somehow, you’re gonna want it later.



Categories: Recovery, Stroke stuff

Tags: , ,

42 replies

  1. I have documentation – my brother photographed and recorded me many times. It is not pretty!
    But, you’re right – it is good to have it documented. I’m just too embarrassed to show it to anyone. I actually have a stroke album – he gave it to me the Christmas after the stroke. That album stays hidden. My family has seen it and that’s it for now.
    No one can believe that I’ve had a stroke and I’m okay with that right now – it may change in the future – I’m just not to that point yet.

  2. I have one photo my husband took the first day I went outside to sit in the sun. I am appalled by it. and I hate every picture taken since then: my left shoulder slumps, I tip my head to the left, and when I smile, the unaffected side of my face (mostly my eye) squinches up like it should, but the affected side of my face does not; I end up looking pop-eyed on one side.

    I looked bad back at first, and I still look bad now. no documentation needed.

  3. There might be some video my OT took of me walking but I’m not going to ask my ex to look for it. I’ll find it whenever I get around to cleaning out the storage lockers

    • I wouldn’t contact my ex for a million dollars.

      • my OT took video of me using the Locomat, but I’m sure it was to demonstrate someone doing everything wrong.

        • Lol no! You weren’t doing anything wrong. You were doing what YOU could do then.

          • Love that mindset amy! ^^ it’s amazing that you got there. Zack is currently having a very hard time with that. I tried to encourage him to start thinking about it in a similar way. But I don’t feel very effective in encouraging him most of the time. He is doing a great job nonetheless. I am proud of him.

            • He won’t have that kind of mindset probably for a few years.

            • Brooke, I’m sure you do a wonderful, and effective, job encouraging Zack. In fact, once he’s healed, he’s going to tell you how it was your encouragement and support that kept him going, that kept him going despite all his trying and failing.My husband is mostly “realistic” and doesn’t like to see with high expectations, but he also frequently tells me that no one has more determination or works harder than I do, and that’s the best thing I could hear.

              • Wow. Thank you, ladies. That means a lot. I often struggle with feeling like I am not doing a good job of caring for him and giving him what he needs. But what I am trying to focus on is that I am doing the best I know how to do and being as sensitive to his needs as I can.

                • By anyone’s standards, my husband is an excellent caregiver. But I don’t want a caregiver. I want to be an equal partner like I used to be. I absolutely hate needing help. So I lash out and he’s on the front line. You sound as though you’re doing a great job Brooke, but you can’t make everything better for Zack right now so don’t be too hard on yourself.

                  • I completely understand, Julia. I don’t think Z is even able to desire that right now. His thinking and understanding of what has happened is not clear enough yet. Though, I do see it becoming clearer everyday. He has had some rough days lately and I know that’s because it is hitting him more and more. But it seems to have lit a fire in him and he is working harder than I have seen him. I want him to understand, more than I want anything in the world, because that would mean that he is “back” in that area. I try my darndest to treat him like an equal. I am learning more and more everyday how to do that now. I was a single mom for a while, so to speak, so it has been a learning curve again. Now he is getting to where he can help make decisions and participate more in everyday life stuff and it is wonderful. Before he got sick, he did everything for me. As a teacher, I worked quite a lot of hours to make sure all my ducks were in a row. He paid all the bills, took care of the house, helped me cook and clean, took care of Charley every morning and took her to and from the babysitter, had a full time job, and did most of the outside stuff by himself. He is an amazing man. I was so incredibly spoiled by him. I just want to do as good as he did for me for four years. I told him that in four more years, he better get ready because it was his turn again. 😉 He agreed completely. I know there is nothing in the world he would want more.

                    • I just found this site and wish I had earlier. You sound just like me. I am also a teacher and counted on my husband to do a lot for me also. He had a cerebellar stroke on April 21, 2013 and our life changed. He is now eating and walking better but his balance is still off. He can’t drive and when I try to talk to him about things he just shrugs me off. I get so discouraged because I feel like just his caregiver and not his wife. I don’t mind doing things for him but I feel as if he doesn’t appreciate it. I tried joining a support group but it didn’t help. My husband is only 56 and every one in the group was older so their concerns were different than mine. He was a very social person and now he doesn’t want to go anywhere or have any friends over. A lot of my friends don’t understand and tell me to go out but I miss having my husband go with me. I have been asking doctors if his cognitive skills will ever come back to what they were but they can’t answer me. Sometimes I feel as if I have a third son by the way he talks or does something. I just keep praying each day things get better because physically he has improved a lot.
                      Thank you for letting me vent.

                    • Welcome Cindy. You can always, always vent here.

                  • although I don’t consider Tom my caregiver, I sometimes refer to him as one. I don’t need one, and haven’t since halfway through rehab. that’s when I was able to take care of myself. there are endless things he does for me, but it’s his choice, not my need, that compels him. even when I ask for his help, it’s just to short-circuit my frustration that would result from me doing it myself. This morning, I changed my approach: Struggling in a turtleneck knotted around my head, I repeated my standard F-word refrain (there’s a certain cadence that results from saying it exactly 7 times). when Tom asked if I wanted help, I said,”No, I just wanted to swear.”

  4. We have a ton of videos and photos. I even have videos that we have taken just to demonstrate his speech so we can see how much growth he has made in That specific area. It is still very evident that things aren’t quite properly working with him, but it’s amazing at how much progress he has made already. And, yes, I would agree… Zack looked so completely different from himself back then. He stil doesn’t look all the way like himself. He doesn’t have the animation in his communication and movements like he used to and his eyes dart around still which obviously make him look different than before. But, wow, the difference from the beginning is amazing. I am grateful.

  5. My husband took a couple shots of me while I was lying in the hospital bed; no idea why. I’ve since deleted them.

    He filmed and took photos during several PT sessions. I like looking back at them to see how much my balance and walking have improved. In the videos, my therapist is listening attentively while carefully observing my movements. Meanwhile, I’m gesticulating like crazy (unconsciously) and talking nonstop. She kept reminding me to stop with the arm movements and focus on walking.

    Apologies in advance but as usual, I’m going to go off on a tangent here (sorry, Amy!)… Being a bit unbalanced and incessant tinnitus are the only negative residual effects I have. Strangely, I’ve had hiccups, every single day for 9 months, at least three to five times daily – weird and amusing but not dire.

    My point being, in a prior post (don’t recall which) someone mentioned being surprised that some of us had relatively smooth recoveries. Brooke, think it might have been you. Just wanted to say that because I feel just as well, if not better than prior to the stroke, I feel guilty. I know I shouldn’t, but I do.

    • First of all, I love tangents. Don’t apologize for that EVER!!! Barb did a great post about recoverer’s guilt………
      http://barbpolansrecovery.blogspot.com/#!/2013/12/what-about-recoverers-guilt.html

      Shelly is your speech affected?

      • Thank you, Amy! And you as well, Barb! The article was most helpful.

        Despite five large infarcts, my speech was not affected. I recall my primary neurosurgeon remarking on several occasions that he was amazed that I can speak at all. I told him it would take far more than a major stroke to shut me up, LOL.

        I felt like the circus freak of the Neuro ICU unit. All total, there were 14 doctors (5 neurosurgeons) over that nine-day period who came into speak with me. Thankfully, they did not all bill me; only the attending neurosurgeon did. He thought he was being humorous each day when he told me he did not want to have to perform a craniectomy. He did not laugh, however, each time I told him not to worry, I didn’t want to interrupt his tee times. 😳

    • Do you have brainstem damage? Hiccups are very typical with brainstem damage….I have them too, less frequently than originally, but three years later I still get them at least once almost everyday. At first, I had them almost nonstop 24/7….very annoying!

      • Thank you, Elizabeth, for sharing that with me! It’s been bugging me to not know why it’s happening.

        No, no one ever told me I had brainstem damage per se. I did see a neuro ophthalmologist about a month after leaving hospital, because I had what she called tilted vision phenomenon. Everything I looked at was tilted 10 to 15° higher on the right and 10 to 15° lower on the left. Even better, it felt as though everything behind me on my left was tilted backward.

        She was the only doctor who took the time to review my MRIs with me and show me the infarcts. Anyhow, she said the tilted vision phenomenon was related to brainstem trauma but she never used the word damage. Semantics, I suppose.

      • Wow! So interesting. Zack had hiccups non stop when he came out of surgery (sternotomy). He never had brain surgery. To make a long story short-he had some tumors in his chest that caused (they think) and autoimmune attack to his brain, so they wanted to get them out in hopes it would help the inflammation to go down in his brain and it worked (thank God). Anyway, the entire time he was in the ICU and the rest of his stay in the hospital he had hiccups probably 75% of the time he was awake. No one had an explanation as to why. I do wonder, quite frequently, if there was any other “trauma” in Zack’s brain besides what they initially saw in his cerebellum. He has so many other issues that aren’t typical with just a cerebellar injury. He has every physical affect typical of a cerebellar injury plus some cog. issues (very mild), and also some emotional issues…which I have heard from docs and read myself that emotions have, as of semi recent times, been connected to the cerebellum. The brain is such an intricate and mysterious…thing. It’s boggling.

    • Yes, don’t feel guilty. I don’t want that at all. Not at all. That is amazing and wonderful. I am so grateful for you! Truly! I shouldn’t have typed that out loud (hah) I was just having a moment of weakness and felt like being vulnerable.

      • Thanks, Brooke. I completely understand the typing out loud. I read your follow up to that post too. Appreciate your positive comments regarding my recovery too!

  6. I wish we had more documentation of how I was too. I asked my husband to take some pictures at the time, since I was convinced I would not be like that for long. He was hesitant and didn’t want to actually face how screwed up I was. The videos were helpful in tracking progress especially my speech. The funniest voicemail got delegated accidentally. I called my husband and told him to bring all my stuff cuz they were discharging me home. My speech was slurred badly, I couldn’t walk, I hadn’t been to any rehab…but I was sure he said I was going home. Not even close!!! Wish we had that one!

  7. Amy be thankful. My daughter took my picture the day after and posted it on facebook. Yikes! I did voice recordings when practicing for a wedding ceremony. That’s where I see an improvement in the past year. No more monotone.

  8. No, no recordings ,tho I do in a way wish I had to show people, they just can’t comprehend what it was like. my wife 2 yrs on still has trouble talking about my looks.(tubes and stuff)

  9. There is a video of me having a seizure… yikes. never watching that again. My physiotherapist wanted to take pictures and video of me doing exercises to help me remember correct form. I refused and made him pose and I took pics of him instead. One of my wiser moves,

  10. Such an interesting post, because I feel exactly the same. The one thing I wish someone had put together is an idiots guide to stroke. I went through a whole pile of problems after the stroke, probably 20-30 separate issues, like balance, swallowing, nystgmus, super sensitive hearing, panic attacks, memory and attention, problems regulating body temperature, tinnitus, flickering vision, slurred speech, alongside a number of psychological issues, and although my memory and focus aren’t what they were, and I’m tired all the time, a bit clumsy etc, most of the other issues are a shadow of what they were at the time of the stroke. I have even started climbing ladders again, which I find amazing. I wish someone would put an arm around you and tell you not to worry so much when it all kicks off.

    One thing I remember quite vividly. One of my eyes was really quite badly out of adjustment, and was less open than the other eye. One evening I felt it almost click, and in an instant it went back to ‘normal.’ Part of the brain recovering I guess.

    I put together a diary at the time, and it is embarrassing, but essential to remind me about a time in my life which was quite an adventure! I lost count of how many times I told my family I loved them in there as I was convinced I was going to die overnight. I have just one photo. There were a number of confessions I wished I hadn’t made to my parents at this time also.

    • An Idiot’s Guide to Stroke, what a great idea!

    • yes, “Stroke for Dummies.” I LOVE it!!! maybe we can collaborate.

    • wow! Your nystagmus resolved? And your other cog stuff, too!? How long did that take? How far out are you? This gives me some hope. Zack is almost 9 months out and has greatly improved but is a shadow of what he was before the injury. It just scares me that one day he’s just going to suddenly stop getting better and the farther we are away from when his inflammation resolved, the scarier it is for me. Though, I will say that things seem to be getting better quicker here in the last few days. He is warmer, more conversational, more connected, and his physical stuff just has a steadiness that I haven’t seen. It’s crazy how this crap works. Did I mention that I HATE brain injury?!

  11. My husband Ken and I are only two and a half months into our “journey”. I am trying to keep a journal, or I write him letters in a note book about what progress he is making. I only have one video of him moving his left arm for the first time 12/4/13. And one photo of him after he got a hair cut and in his glasses for dbl vision. The therapists keep a binder of all of the things he does everyday so that we can look back on it and we will be going home with it to continue the pages.

    He is discouraged and doesn’t think he is making any progress but he is buddy walking, talking better and he is eating 3 meals a day. Puree but still it is better than tube feed all the time. I have photos up of our Harley for motivation and he keeps talking about wanting to go back to work. I am trying to keep him motivated but I don’t want to sound like his family that comes in, tells him and me what to do and leaves.

    I would love to get any kind of advice I can on this life change. Ken and I have only been married since 6/1/13, so…. this is not quite the honeymoon stage that either of us planned on. I am trying to keep him encouraged but I know that he is worried about me leaving him (which I would never do) and he doesn’t feel like the man he should be for me. We need help.

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