I had a very interesting experience yesterday.  I had dinner with a friend that had a stroke a year and a half ago.  For the first time since my stroke, I was the one sitting at a table in a restaurant as the “not sick” one.  Scratch that, “less sick” one.  I was the one who was able to give her some information, help her with some stuff.  It was weird.  After we ate her parents sat down with us for a couple of hours and asked me questions.  That’s absolutely wonderful.  The absolute #1, most loving, caring thing you can do as a caregiver for someone you love that is sick is get information and learn as much as you can about how to get that person back to their life.  Was this done for me?  No it was not.  In fact, the opposite happened to me.  I was made fun of and laughed at for some things I wanted to try that ended up helping me tremendously.  So you have no excuse, cause I know it’s overwhelming as hell.  But, if you are reading this and someone you love gets really sick and you actually want them to get better and back to their life, you know what to do.  I just told you.  Find someone who has been through it that has made a good recovery and ask them a ton of questions about what they have been through and what they have done to overcome it.  In the last 2.5 years, I’M the one who did a ton of research, I’M the one who learned a bunch of shit, I’M the one who read everything under the sun.  No one did it for me.  It was all ME, ME, ME.  And don’t think that just talking to all of the doctors and blindly following the advice of Western Medicine is the right thing to do, it’s not.  That actually might be one of the worst things that you can do.

Categories: Brain stuff, Health, Recovery, Stroke stuff

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28 replies

  1. Yes, I wish I’d had someone who’d been through it to talk to. On the other hand, I haven’t researched everything possible, although I’m game to try anything I find out about. I’ve tried all sorts of non conventional therapies: sound healing, shiatsu, cranio-sacral therapy, and acupuncture among them; nothing has worked better for me than trying to do the thing I want to. It got me in a mess of trouble in rehab, but has worked like a charm in real life.

  2. By the way, if I hear one more story about wonderful world of Western Medicine f’ing someone over, I might lose it.

  3. I would echo that. Don’t even bother listening to what the doctor or therapists say unless they have had a stroke. I tried going to several stroke support groups but they were mostly whiners.

  4. Try Neuro – Ifrah therapy. It has helped me to relax my muscles and get movement in my shoulder and knee.

  5. I am always on the Internet searching for things that may help my husband, reading stroke survivors blogs, but sometimes I fell disappointed when I have to ask my husband to do his exercises everyday, if he wants to get better (he is 43 years old) how come he is not eager about working hard on his recovery? He has the Bioness for the leg and a stationary bike,the saeboflex, Empi and the magic wand massage for his arm, some bungalow programs for his speech and an other one that I don’t remember the name. We even took him for hyperbaric oxygen therapy. He has been told he can get better if he works hard, but he is just waiting for the miracle to happen. How come you guys are so motivated? Do I’m doing to much for my husband?

    • Yadira, your husband is going through absolute hell right now. You are too, I get that, but he lives and breathes this 24 hours a day. You can’t come close to empathizing with what he is going through. We all, every single one of us, have days when we are terribly depressed and hate the world. It sounds like we’re all gung ho and motivated but that’s not all the time – trust me. He’s only 2.5 years out, that’s like nothing, that’s no time at all. It takes everyone a different amount of time to accept it and realize what needs to be done.

      • Thank you Amy, but do you think that a person push himself harder when there is no one around them to do things for them?, we live next door to my inlaws and my husband is always at his moms between the two of us we pretty much do everything for him. he is not taking medication for depression and he seems to be content all the time, is me the one who is always angry and sad for all of these. How do you manage to be on you own? Do you ave any family close by?

        • I’m sorry. :/ Hang in there. I live 15 minutes from my parents. Honestly, it sounds like at this point, no, he won’t push himself harder when no one else is around. But he will, in time. I’m on my own because the situation that I was living in was unbearable and it was also unbearable living at my parents house. So I’m on my own kinda more out of necessity really.

        • You make an interesting point. I had to work hard because my husband who was home with me had to go back to work and I had to be able to manage by myself during the day.

          • Julia, I know what you mean. Part of my recovery is due to the fact that I am my husband’s caregiver.So I tend to work harder on those HAVE to recover or adapt issues. But without family and friends around I also had to learn to do things myself.

            Ya dire, so long as your husband has everyone else doing everything for him, why change and do it for himself?

            • When I don’t do things for my husband he feels I don’t care or I don’t love him, but I was told the most he does the better he gets.
              I still help him with showers, he wash his hair and I do his body, then he gets out of Te shower and I dry him out, put deodorant and he dress himself. Do you guys do your own showers and if you do how?
              Thank you so much for sharing

              • Yadira, re showering: maybe you both could change your standards… I used to shower daily, but now it’s two or three times a week. It’s getting dressed damp that’s the hard part. Does you husband have a shower chair? My OT and I devised a safe way for me to shower- first with help, then from that routine, I took over more of the steps. I still like for my husband to dry my back after. I think if he can wash his head, he can wash his body. Sitting, he can squeeze liquid sop onto a washcloth on his leap, and then scrub. To get to his unaffected armpit, he can swing the soapy cloth up and snag w underarm, then use his arm motion to scrub. Other survivors can offer other suggestions … showering ourselves and dressing were some of our first relearned sKills. flip top plastic bottles, and Colgate toothpaste ( because of its cap).step-by-step he can add an accomplishment, and maybe it will help him feel better about himself, which can only help.

                • We have a shower chair but we don’t use it, I like the suggestion you are giving us. Time to use the shower chair again and try to see how much he can accomplish for himself.
                  Thank you so much

                  • Yadira, I had a stroke 4 years ago and still use my shower chair, although I stand to shower when I go to visit people and after aquatic therapy. I’m MUCH harder for me to shower standing up. There’s no juggling soap and shampoo bottles. If I drop something, I can safely reach it from the chair. And I can have a RELAXING shower, something I can’t do standing. All the best.

                    • Showers are a dangerous place. I do very well, but the shower is a place I’m still extra careful. We have a built-in seat which I use most of the time. we also have a dispenser on the wall for soap, shampoo, etc….just push button…no bottles.The hot water makes me dizzy and so does closing my eyes to wash my face.

            • It was the same for me. I HAD to get better, and I WANTED it more than anything. We couldn’t afford to pay someone to take care of me and my son…and somebody (my husband) had to work since I wasn’t/am not able to. I had to be able to take care of my son and I wanted to…My son was 2 at the time and I wanted desperately to be his mom. With my son, it was really hard because I couldn’t stop or give up…I was the only one there…I HAD to be successful. It was crazy hard, but I’m sure it made me recover…sink or swim technique over here. Yadira, I’m sorry for you….that must be incredibly hard and frustrating. Can you require more from him without endangering him? Think small baby steps. Or have you brought him to a neuro-pschycologist? He might be depressed and “hides it well”, or he’s somehow afraid of doing more? It’s worth getting a set of professional eyes on him in my opinion, and you can discuss your frustrations there too. They might be able to offer insight/solutions.

              • I know my husband want to get better, he is always telling us I want to get back, but he is no ready to push himself harder. He walks with out assistance, his balance is great, he can lift his arm all the way to his head ( bend arm), but he does’t try to use his arm at all, his speech is getting a little bit better, but something that we are doing wrong is to talk for him or before he finish a word we are guessing it.
                I idmire all of you for your hard work and determination.
                He haven’t had to much luck with the neurologist, but maybe a neuro-pschycologist can do better, never heard of it. At the beginning of this year we loose our insurance, but finally Medicare is kicking in this month for him. I wish he was interested on reading your blogs to see that he is not alone and yes he can get better.

                • Yadira, it’s interesting to think about personality and motivation as it applies to stroke recovery. Motivation is one of those characteristics that someone might have, and we all know that you can encourage, but you can’t motivate, someone else; think of a smart kid doing poorly in school … Has any parent ever motivated a kid to change? What could/does work? Pre-stroke, I was bossy, driven and persistent, pigheaded even. I wanted what I wanted and always figured out how to get there; I failed sometimes, but only after giving it my best shot.

                  I don’t mean to be discouraging, but you might have to let go of feeling responsible for his recovery. It’s his, and all you can do is encourage him. And yes, it’s easier for all of us to have someone else do things for us, but the motivated ones are like 5-year-olds who just want to do it themselves.

                  All the best. Good luck.

                  • Thank you Barb, you are right I want him to get better so bad than I need to remaind myself that at the end is his body and is him the one who has to push himself, maybe he is not ready yet or haven’t figured out that working hard can help him with his recovery.

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