CagedBird Posted August 19, 2008 Share Posted August 19, 2008 Tonight I spent 10 minutes trying to open my medicine bottle. The pharmacy caps are always extremely difficult for me to open so I usually find someone else to open it for me. but tonight as i sat in my apartment alone, i had no one to help so i put the medicine bottle in my left hand, squeezed, and used my right hand to push down and turn the top off. this was my first time using my left hand to actually do something since my stroke 7 years ago. I was proud when the bottle finally popped open but I couldnt help but feel frustrated since it took so long and my hands were sore. I started to wonder if I try to use my left hand more often will there come a day when it is easier for me to use it? I know the doctors say you might regain use of your affected side although it will never be the same again. but how do they know? how many case studies have been done on people with strokes? I guess I just wonder if I will get better or not. I wish I could just look into my future and see if Im going to be a little bit better, back to normal. or still the same. I know there have been a lot of post on acceptance but I wanted to know what you all honestly think of your condition? Do you have a pessimistic view and only look at the bad side like things will never be the same? Or do you have 100% faith that you will get better no matter how long it takes? honestly, I have a pessimistic outlook but at the same time its acceptance. I feel like this is the way things have been and most likely will continue to be? but sometimes I do think what if one day my toes began to wiggle and my fingers move or what if I stretch my arm enough I get it as strong as the right one? Are you pessimistic or optimistic, HONESTLY? Link to comment Share on other sites More sharing options...
Vivid-Dawn Posted August 19, 2008 Share Posted August 19, 2008 The old saying "is the glass half empty, or half full?", should be simple enough to answer...right? Well, my answer has always been "That depends on if you took a drink from it, or poured something into it". I've always like to analyze things more than I probably should! So here's my opinion. You did something with your 'off' hand! YAY! (I have both hands working, and I still can't get those durn things open!). Here's the main thing...are you satisfied with that? If so, then I guess you're where you want to be. If you'd like to do more, then just work harder at it, and it'll probably be a while before the next victory, but it'll be worth the wait. Find motivation of some sort. Opening pill bottles first, then maybe something else requiring a bit more dexterity and/or strength. Knitting, piano playing, etc. For me, I'll never get back to my old self. Not from the stroke, but I have heart failure. I get weaker every year. I used to could walk around the whole neighborhood, and now I can barely go along half a street before I get tuckered out. Then again, I haven't really been trying. Had nothing to motivate me. Now I have the hobby of fishing, and the place I really want to go next spring requires an uphill hike... the doctor assured me that if I try to get back into shape, I won't end up straining my heart (as I assumed), but it's just like any other muscle like biceps, abs, calfs, etc.... the more I work it, the stronger it'll get. So now I go on a treadmill every (okay, maybe every other) day. I want to be able to make the whole trail, and stop to rest at the END of it, rather than 2 or 3 times along the way. And then still have energy to reel in a big fishie! LOL Link to comment Share on other sites More sharing options...
stessie Posted August 19, 2008 Share Posted August 19, 2008 Caged Bird Good post. I honestly believe I will improve. There's no fluff to that statement. I work every day toward improvement with exercise and being as optimistic as possible. If I think for a moment that I can't do something, it makes me even more determined to try to do it. I have been trying to walk heel to toe for the past month and a neighbor commented to me in our driveway tonight without solicitation that she was noticing some improvement in my gait. I was thrilled! This same neighbor has seen me walking up and down our street for the past year struggling to improve. Vivid-Dawn Great post. It's refreshing to read your feedback. You seem determined and brave. Look forward to your future posts. Stessie Link to comment Share on other sites More sharing options...
scrapdoo Posted August 19, 2008 Share Posted August 19, 2008 Caged Bird, I have a little of pessimissim and optimisim. I am pessimistic that I will not recover to my desired level. My optimisn is that I will recover as much as I am able. I continue PT, OT and ask them to challenge me hard I WANT to recover!!! I think practicing and repitition is helping me regain use of my affected side. I am very stubborn. I will not give up! Do what is right for you. I can't tell you what is right for you. I only know what is right for me! Wishing you the best of luck with your road ahead. Beth Link to comment Share on other sites More sharing options...
lucky22 Posted August 19, 2008 Share Posted August 19, 2008 Great post. I believe I will continue to improve. I've worked continously to improve mentally and physically since my stroke 6 months ago. One interesting thing I have found is that there have been a lot of unexpected side benefits to this. By constantly challenging myself, I think I've developed more self-discipline, patience and peace of mind. It has not been easy, but has definitely been worthwhile. Link to comment Share on other sites More sharing options...
sue in oz Posted August 19, 2008 Share Posted August 19, 2008 Hi CB, First of all congrats on opening the bottle A+ for giving it a go & A++ for succeeding. I'm on the optimistic side of the fence. Sure I have a bunch of deficits, but I continus to work bloody hard to claw back what I can. So I will get better - maybe not completely but certainly improved. So what if the qwacks say one won't improve - prove them wrong & give them some positive data to add to the "negative" data they are quoting. Keep up the good work & I hope the driving is going well. I do my test on 11 September. HTH Link to comment Share on other sites More sharing options...
merichsen Posted August 19, 2008 Share Posted August 19, 2008 Katrina, My attitude was always that I could do anything that I put my mind to. After my stroke I continued to have the same outlook toward recovery, as time went on and I became somewhat frustrated, I was told that I might just have to accept the fact that this was out of my control. I don't back down that easily though and I have yet to find anyone who can give me a good enough argument as to why I should not think if there's a will there's a way. I think what made it harder for me earlier on was that I tried to put time constraints on my progress, e.g.I would predetermine that i would have my arm working in "x" months and felt defeated when that didn't happen. That wasn't realistic or the type of thing we can do with recovery so I was setting myself up for disappointment and failure. When I came to that realization what I also considered was that it may not be the recovery of my arm that may be out of my control, and I may need to adjust how I look at attaining goals in life. I always looked at it as shoot high, if you shoot for the sky, you may land among the stars, but if you only shoot for the stars, you'll land on the clouds and so on. Reach as high and never take your eyes off the goal no matter how long it takes you to get there. Spirit, will and determination are amazingly powerful forces ~ just look at your transcripts Katrina. Maria :hug: Link to comment Share on other sites More sharing options...
HostAsha Posted August 19, 2008 Share Posted August 19, 2008 Katrina: It's great question.for me I am trying everyday to be closer to the way I was prestroke. yes I can not my left hand yet the way I used it before "normal way" but what is normal anyways. I still try to use my left hand yes right now as fist turning on off lights, I am adding new ways to incorporate my left hand in all daily activities. you will see once you don't give up things becomes easier than they were day before. try to open that medicine bottle every day & ypu will realize by month end it will take only minute to open it. I know you are very strong lady, so don't ever doubt yourself. you are meant to soar in your life. Asha Link to comment Share on other sites More sharing options...
dstraugh Posted August 19, 2008 Share Posted August 19, 2008 Katrina, Excellent post and topic first of all!!!!! For me, it's a combination of optimism and pessimism though I strive for the optimism as well as the acceptance that I may not gain any more back but I'm not going to be complacent about it either and give up any hopes for further recovery. I try to only look at how far I've come since my encounter with stroke on 1-1-05 not at what life was like before that day (seems like a lifetime ago). Part of my journey has been finding ways to adapt to the deficits I have. My affected leg is slowly coming back but the affected arm and hand are being super stubborn. I forge ahead and strive to improve knowing that ultimately all is in HIS time, not mine. Good for you that you got the bottle open - YEAH!!!! for you - celebrate each victory no matter how small. Link to comment Share on other sites More sharing options...
kanderson Posted August 19, 2008 Share Posted August 19, 2008 katrina, that was a good post. i think we all feel both ways at times in our recoveries from a stroke. you accomplished a big thing with the medication top. my thoughts are NEVER NEVER GIVE UP HOPE. stroke recovery is repetition. doing things over and over, to build new pathways in the brain. believe you can do anything and work hard at it to achieve it. my leg has gotten stronger over the years but my hand/arm are taking their sweet time. recovery from a stroke can be for the rest of our lives. we have to be patient,work hard and prayer doesn't hurt either. look how far you have come already. look at a baby and how they learn as their little brains develop, everyday they can do something new, like walking. they fall down alot but get back up and try again til they get it right. using their hands to grasp things, etc . we are alot like them in relearning things. they never give up until the master it. prove the doctors wrong katrina. all of us here want you to achieve great things. Link to comment Share on other sites More sharing options...
fking Posted August 20, 2008 Share Posted August 20, 2008 I have been told "use it or lose it." I think that's true in my case if not most cases. Secondly, you can request easy open caps for all your meds. That's what I do. Using any part of your affected side increases its function. Link to comment Share on other sites More sharing options...
jjohnson Posted August 25, 2008 Share Posted August 25, 2008 Thank you for such an awesome post, I have been reading it and rereading it for a few days. First off, :cheer: CONGRATS for getting that top off the medicine bottle. That was a great achievement for you, it's was right on time, as last night I had to get a pill and my hubby had just brought the rx's from the pharmacy home, BUT, God blessed me, they gave me a different kind of top and it was much easier to open. Finally, That was a big accomplishment for you and I think it's great you shared that. Your honesty is refreshing. For me, I have good days and at times I have inbetween days, and yes, a few bad days. I do try to keep a positive attitude as I think that is very important. I am my worst critic, I am very hard on myself. I wanted recovery so very much and I pushed myself. What I didn't know in the beginning of this journey is that it is a loooooooooooong journey. Also, I am in God's loving arms and it is all in HIS TIMING, not mine. Let his will not mine be done. I have a double wammy as I have a form of Muscular Dystrophy. Then I have had additional strokes which hit me hard. I have surgery this Friday, however, once I get better from that, I am starting back on my road to improvement and I am going to get right back on the POSITIVE ATTITUDE TRAIN. WHOOOOOOOOOOO WHOOOOOOOOOOOOOOO ALL ABOARD :happydance: :Clap-Hands: I have always thought If you can dream it you can achieve it. What does help me is I have affirmations all over my house. I look at those and reflect on those. I love when in doubt look above. Each day I wake up it's a new canvas for me to work on a new picture. I want to get stronger, healthier. Thanks again for the post and thank you to those who shared your view point. God Bless, Hugs, Jan Believe in Miracles and SOAR Link to comment Share on other sites More sharing options...
mcdube Posted August 27, 2008 Share Posted August 27, 2008 Katrina, Excellent post and topic first of all!!!!! For me, it's a combination of optimism and pessimism though I strive for the optimism as well as the acceptance that I may not gain any more back but I'm not going to be complacent about it either and give up any hopes for further recovery. I try to only look at how far I've come since my encounter with stroke on 1-1-05 not at what life was like before that day (seems like a lifetime ago). Part of my journey has been finding ways to adapt to the deficits I have. My affected leg is slowly coming back but the affected arm and hand are being super stubborn. I forge ahead and strive to improve knowing that ultimately all is in HIS time, not mine. Good for you that you got the bottle open - YEAH!!!! for you - celebrate each victory no matter how small. great topic. I am 24 years post and still struggling with that. I was told my left side would not get any better, its still useless but I stopped trying when they told me that. yes I am optimistic in the way that if I want to do something, I find a way to do it. I have completely accepted the way I am and try to find ways of doing things with one hand, therefore I have been called a quitter which is very insulting to me.Maybe I am lazy but I don't feel like exercising when I feel that it won't come back. I hate working for nothing. My boyfriend is after me to exercise my arm all the time and frankly I would like to do other things with my time. Enough is enough. This subject comes up a lot and we end up fighting. I wish I could have a guarantee that I would not be working for nothing. I have enough to do around here without having to add the darn exercises on top. Since I met him, he has encouraged me to do more and more. now I do all my housework including washing floors whereas before I had a cleaning lady. He helps but hehas no sympathy when I struggle with something. He believes that if I work that arm, it will come back. I really wish I could believe that. Link to comment Share on other sites More sharing options...
CagedBird Posted September 1, 2008 Author Share Posted September 1, 2008 Katrina, Excellent post and topic first of all!!!!! For me, it's a combination of optimism and pessimism though I strive for the optimism as well as the acceptance that I may not gain any more back but I'm not going to be complacent about it either and give up any hopes for further recovery. I try to only look at how far I've come since my encounter with stroke on 1-1-05 not at what life was like before that day (seems like a lifetime ago). Part of my journey has been finding ways to adapt to the deficits I have. My affected leg is slowly coming back but the affected arm and hand are being super stubborn. I forge ahead and strive to improve knowing that ultimately all is in HIS time, not mine. Good for you that you got the bottle open - YEAH!!!! for you - celebrate each victory no matter how small. great topic. I am 24 years post and still struggling with that. I was told my left side would not get any better, its still useless but I stopped trying when they told me that. yes I am optimistic in the way that if I want to do something, I find a way to do it. I have completely accepted the way I am and try to find ways of doing things with one hand, therefore I have been called a quitter which is very insulting to me.Maybe I am lazy but I don't feel like exercising when I feel that it won't come back. I hate working for nothing. My boyfriend is after me to exercise my arm all the time and frankly I would like to do other things with my time. Enough is enough. This subject comes up a lot and we end up fighting. I wish I could have a guarantee that I would not be working for nothing. I have enough to do around here without having to add the darn exercises on top. Since I met him, he has encouraged me to do more and more. now I do all my housework including washing floors whereas before I had a cleaning lady. He helps but hehas no sympathy when I struggle with something. He believes that if I work that arm, it will come back. I really wish I could believe that. I know that feeling too well. My exes always urged me to exercise telling me I would get better.Then I have to explain most stroke survivors only get better in a year. I think surviving a stroke is not about getting back to normal. Its about adapting to living with stroke Link to comment Share on other sites More sharing options...
Vivid-Dawn Posted September 2, 2008 Share Posted September 2, 2008 MDC & CagedBird - I know exactly how you guys feel. My ex-husband and his family were always telling me "you're not trying hard enough" or "just push yoursef". Partly the reason I got divorced. I guess they just don't understand what heart failure is about, despite the fact I tried to explain that I'm getting worse, and no amount of effort/determination is going to make me better. While I'm not currently on the transplant list, my doctors have told me to plan for it in a couple years. I have optimism about what I can do now, but I'm also a realist in the fact that I know if I DO try too much, too hard, it'll just end up backfiring and turning out badly anyway. Sometimes other people can't just be happy with how things are, even if you've accepted it. Link to comment Share on other sites More sharing options...
greg Posted September 11, 2008 Share Posted September 11, 2008 CB, I'm living proof that excercise, working out and using your bad hand will cause major improvement. The past 2 weeks i've been too tired to exercise and i've noticed that everything is just worse Link to comment Share on other sites More sharing options...
Outsider Posted September 11, 2008 Share Posted September 11, 2008 I started to wonder if I try to use my left hand more often will there come a day when it is easier for me to use it? Hey CB! Let me answer your question with a question. When a baby 1st starts to walk is she perfect the 1st time out? NO of course not. Repetition is the key to success. In our situation we are forced to re learn all we once took for granted as every day minimal tasks. Well NOT anymore.... Tell you what I did because I went through the EXACT same problems. What I did was take a medicine bottle ANY medicine bottle and while sitting around watching TV I would practice and practice opening that blasted thing. Over and over and OVER again. After about 6 weeks I was a pro again. Be patient, take whatever time you need to learn what you need to learn. You WILL get better in time. May not be in YOUR time but you WILL see improvements more so than if you do nothing and become toodependant upon others to do things you CAN learn to do for yourself. Link to comment Share on other sites More sharing options...
AllanWilliams Posted September 11, 2008 Share Posted September 11, 2008 Katrina To start with great post. Myself you can only be optimistic Survived a stroke last year after surgery recovered 95% I thought to myself not bad done quite well after a while had a heart attack had a few stents put in and back on the road to recovery with a positive outlook, a little bit further down the track had both legs amputated That set me back on my A---! but with a little bit of optimism not realy a lot of optimism I got over that and accepted my new way of life. I wake up each morning if a nice morning make a cup of coffee and go sit outside in the sun looking around I can smell all the flowers in bloom the birds chirping away and wave good bye as my grandsons go to school. I have so much to be optimistic about. Allan PS As far as i'm concearned I got better Link to comment Share on other sites More sharing options...
aikidokaratefan Posted September 13, 2008 Share Posted September 13, 2008 Hi Cagedbird, I'm a new member, and very glad that this forum is here for stroke survivors. My daughter had a stroke nearly 10 months ago, at age 17. No cause was found. I'm convinced it was from the pill, which she took for her acne. Enough background. We chose to visualize a complete recovery, from the moment we learned of her stroke. It took several weeks for her to be able to walk with a cane, and a couple of months before she could talk and make herself understood. She had lots of physical therapy, occupational therapy, some speech therapy, and always, lots of love and support. Her doctors were pessimistic, which did not surprise us. They said that she would be unlikely to make progress after about six months post-stroke. We steadfastly refused to believe that. We found that she got depressed, which is common with stroke survivors. Remember that she was 17 when it happened. Her network of friends disappeared. Recently, she started on an antidepressant, which made a huge difference. After the six-month stroke anniversary came and went, we continued seeing improvements. Changes are often small, but sometimes out of the blue, she recovers some function in a big way. We remind her of how far she's come, and praise the hard work she's doing. Her speech has improved to the point where we can understand almost every single word. . She often self-corrects if her pronunciation is off. The most persistent problem with her speech has been a lack of intonation. Just this week, there has been a huge improvement. I noticed months ago, that she was able to talk with more animation when she'd play with our cat Cassie, whom she adores. I told her to practice talking to the cat as much as possible when no one's home, and to "pretend we're Cassie" when she talks. She walks much better, and still needs an ankle-foot orthotic (AFO) to help with dorsiflexion. Her right arm and hand still have quite a way to go. We're using a Bioness H200. It has helped a lot with finger extension. It started getting better about 2 weeks after using the device. We'd like to buy one at the end of the 4-month rental period. It's not cheap: $6200. I joined this network hoping to find one that someone was selling. I see now that there is a great network of support here, which is heartening. There's a fabulous video you must see, in case you haven't already. Here's the link: http://www.ted.com/index.php/talks/jill_bo...of_insight.html It's about a research scientist, Jill Bolte Taylor, who had a stroke. She recalls the details of the stroke itself, and talks about her recovery. It took her eight years. I was so moved by the video that I got her book and read it right away. It's called A Stroke of Insight.My daughter is almost done reading it, too. I realize that people are all different, and so is their stroke recovery. I feel that no matter what kind of stroke you had, how long ago it occurred, or what you've done so far, the best approach is to visualize continued improvement in your skills, and your growth as a person. If you make this the foundation of your daily life, you will be amazed at the wonderful things you can do. Don't worry about whether you will "get it all back". Keep the positive attitude, and focus on improving your mind and strengthening your body. Make it ok in your own mind to get whatever recovery you get, and have faith that miraculous improvements could happen. Giving to others, however you can, is therapeutic, too. In short, you will keep getting better, as long as you maintain that vision. Thanks to all who share here. Aikidokaratefan Link to comment Share on other sites More sharing options...
dreinke Posted September 14, 2008 Share Posted September 14, 2008 Caged Bird. I have an optimistic attitude but there are times when I just get frustrated about the slowness of it all. Regarding the case studies on recovery you were asking about. I haven't seen anything. I would also like to know what percentage of people have recovered fully. However that type of research is boring and I doubt a regular researcher would condescend to doing it. Maybe if we could get a layperson to do it. There are hundreds of thousands of survivors out there that would gladly answer a few questions. You could try asking at the National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/ If enough people ask the same question they might do something about it. here is the question page for NINDS http://www.ninds.nih.gov/contact_us.htm Thanks for strarting this discussion. Dean Link to comment Share on other sites More sharing options...
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