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Stroke Survivor - male
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About PaulNash

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  • Birthday 05/18/1958

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  1. > just beginning to understand... that surviving this far is something. Maybe I was feeling a little guilty For what it is worth I'm still having difficulty dealing with guilt and understanding that just surviving is quite remarkable (and I had a comparatively mild stroke). Accepting that you are disabled is not easy, especially when the disability is invisible. (I had something really clever and pithy that I was going to add here, but I forgot what it was while I wrote the previous sentence :-)). Friends and family want you to be better. You want you to be better. So you get lots and lots of positive messages ("you are doing so well"), and every failure comes as a surprise and a shock ("but I thought that that was OK now"). I hope that things get easier and easier for you. For all of us. And we have each other.
  2. >> I miss my doggy, Pearl, so much. She was our “empty-nest” puppy. We have a Shitsu-cross called "Pearl", adopted form the local humane society (my wife is a vet there). She was (and still is) a huge boost when I start to feel down, unconditional love 24/7. I don't know how long it has been, but if it is not too soon, consider looking for another dog to love and be loved by. They really do help with mood and with recovery for serious trauma or illness. Other than that be kind and forgiving to yourself. Just surviving this far is an amazing feat, much more difficult than running a marathon (I know, I ran lots of them before my stroke). Remember, you've got lots of time to recover, so don't worry if it is slow. paul
  3. Me too! Or when I forget and order it again, and again, and end up with two or three of whatever I wanted. Double/triple Christmas!
  4. Hi Pam Welcome to one of the most exclusive clubs around. Feel free let your hair down and let it al out here. We know what it's like and have all been there in one way or another (or are still there). As Heather said, you'll see continual improvement over time. I'm a touch over two years post, and have just see a huge leap in self-confidence, and my ability to engage with people instead of (not always just figuratively figuratively) hiding in a corner. I'm sure that your friends are trying to be encouraging. I got a fair amount of that early on (and still do), and found it very disheartening, as though they were negating the trauma, until I finally managed to understand that they *did* see the deficits and were not denying their existence, but were trying to cheer me up and encourage the healing somehow. Also quite a lot of wishful thinking on their part -- it's painful when you see someone you love reduced in this way. Try to take what they say as signs that they love you, and want the best for you. Your brain (and body, and psyche) has had a huge trauma, and it takes time to heal. Hang in there, rest, and be gentle with yourself.
  5. For both Hogarth and Ed, about being slower than before. I am a network engineer, and I am still the person who is ultimately responsible for a bunch of networks. It's been over two years since my stroke, my cognitive processes are still much slower than before, my memory is still shot to ribbons, and I still get seriously fatigued (especially in noisy environments like data centres or when I am battling with complex problems). I went through a spell of thinking that I would have to give everything up, but a couple of my clients persuaded me to keep working (fortunately). I take longer to get stuff done, BUT I document everything much more thoroughly (well enough that someone who has never seen the network before can pick up and be productive), I plan more carefully, and I take breaks. Lots of breaks. The end result is that my work is more reliable and predicable than before the stroke, and if anything were to happen to me any half-way competent engineer would be able to take over. One thing that I have *not* done is drop my billing rate. No-one has asked me to, and I have not volunteered. I have asked a couple of clients why, and they say that they are still happy to pay for a known quantity, and while it may take longer and thus cost more, they have a more predictable outcome and a safety-net in the form of careful documentation. So in some ways, at least, the stroke was a win for all concerned. Try to take this as an opportunity to change the way that you work, and see where that takes you. Yes, there will always be people who want it fixed RIGHT NOW, but they can either wait or find someone else. It's quite astonishing how many urgent jobs are not quite so urgent when I tell them that.
  6. I started walking unaided after a month or thereabouts, and started walking normally after three months of rehab walking in front of a mirror so that I could see what my left leg was doing. Two and a half years later, I can walk normally unless I am tired, I can run slowly on a treadmill for about 30 minutes every other day, and can run got around an hour outdoors when the weather is good. All this varies depending on how tired I am, how much I have eaten, whether I've been trying to cope with complex tasks (like driving and cooking). I was very lucky in that regard, as my defects are primarily cognitive (memory and social interaction) and visual (I'm partially blind). However, when I started rehab, I could not stand on one leg, even with both eyes open. And before the stroke my idea of a decent weekend run was somewhere between 30 and 50 km. Everything improves with time. Sometimes the improvements are very slight and very gradual, but they are there. But when I look back over the last 2 1/2 years, the change has been massive. Think of boiling frogs -- put them in cold water and start heating it gradually, and they won't notice the water getting hotter until they have boiled to death. So too with a lot of post-stroke improvement. It can creep up on you gradually, so that one day you think back and realize just how much things have changed. These are still early days. Hang in there. It'll come with time and practice.
  7. Give yourself time. Your brain heals slowly, and will keep on improving for as long as you live. I have had similar feelings often. In my case, the first year was a blur, second year was more aware and varied between "better" and "much worse". I'm into my third year now, and things are a lot more stable (generally improved and improving). Last year I had recurrent thoughts that everyone's lives would have been better if the stroke had only been fatal. No tensions between me and my wife about emotions and communication, not fights with the disability insurers about whether I am cured because I have my driver's license back, no stress about trying to restart my consulting business and watching savings dwindle. And of course the insurance company cannot really claim that a corpse is still a productive person. All that has passed (or is passing). I am aware how grateful my wife is that I am still alive, ditto my kids. Yes, they get stressed and upset about my deficits (especially the hidden ones, like memory and actually voicing what I want to say), but overall they are happier that I am still alive. And so I am happier. These things take time. Give yourself some compassion and some forgiveness (this was not your "fault" , after all) and a whole lot of time. Talk to those around you (especially your wife) about how you feel and about how they feel; try to make it clear that your mood is not their responsibility. Try to get out, even if it's just to get fresh air. Get as much exercise as you are able to. Try to meditate (I've found that just a 10 minute "focus on breathing" exercise calms me down and centres me for several hours). And know that you are not alone. Everyone on this board sympathizes wth you. We want to help, and so, I am sure, do those closest to you. Give yourself permission to need that help and open up to being helped. We love you. We care. So do many more people.
  8. Sounds wonderful. Maybe I should pop over to Oz for one of your surf days :-).
  9. Hi Ed We are all living lives that we did not expect or hope for. However, we have to live the lives that we currently have. Things change, the trick is how you respond to the change. And it is not easy responding to unplanned and unwanted change. My stroke has taught me more about resilience and dealing with the unexpected than the preceding 58 years did. There have been many times when I thought that I could not carry on, or wished that I had died while in ICU. There have been even more times when I have been grateful that I survived. I spent three months in rehab, two days each week. During that time, I saw so many people who were in a far, far worse state than I was. I also discovered that my impairments were far, far worse than I had thought. In the end, I am grateful that I lived, and in some strange ways, grateful that I had the stroke. It has taken quiet some time, but has taught me (and continues to teach me) a lot about life, people and myself. Any yes, my mood still bounces around, from anger and denial to despair and grief to acceptance and forgiveness. I am lucky about how my family took this, quite upset about how some of my close friends shunned me as though my stroke was contagious. All that said, it sucks, sometimes more than others. We're here to give you a should to cry on or to lean on, we understand what you are going though (or some of it), and we'll do whatever we can to help. That's what this board is all about. My only real advice is not too look too far ahead; focus on getting through the next day. If that is too scary or depressing, focus on the next hour or the next five minutes, or making a cup of tea, or washing just one hand. Once that is over, repeat the process for the next chunk of time or small activity. Over time, the chunks of time get longer and longer. All sorts of love and good wishes flying your way. We care. paul
  10. Hi Jeannie My heart goes out to you. Sounds like a "perfect storm" of one thing after another. Having a stroke sucks. You've probably seen that progress comes in fits and starts, and can be erratic. So how things are now are not how they will always be. However, life goes on. I find that looking ahead a day at a time, followed by a week at a time, helps enormously. When I try to imagine life in 10 years' time, I crash horribly, so now I just don't do that. Focus on getting through the next hour, then on getting through the day, and when that gets easier, start focussing on getting through the week. Try not to worry about the rest (and yes, I know that it's easier to say than to do). As time goes on it gets easier and easier to keep going. We are here. We understand. You can cry on our (virtual) shoulders, talk and we will listen. We've all been through some of what you are going through, and are all still going through it. PS: I would happily swap you some memory impairment for some executive function :-).
  11. Hey Heather I sympathize. I hope that the liver issue resolves soon, and you can start exercising again. Can you at least take yourself off on long strolls; just getting out and about, even if slowly, can make a huge difference to mood and health. It's quite a pleasant change to have someone envying me :-). I'll try to remember that to cheer me up next time I need cheering.
  12. "Like the time I fell off the stage in the middle of a play...I've gotten a lot of mileage out of that one :-)" Spike Milligan once tripped and fell flat on his face when making a dramatic exit in "Son of Oblomov" (if what remains of my memory is correct). Rather than trying to recover, hie just looked up at the other cast members and say "you carry on, I'm just going to chat to these midgets down here". Then launched into a hilarious impromptu 15-minute monologue with the imaginary midgets, and had the audience and the cast doubled up in laughter. So you are in very good company!
  13. Hi Donna Quite a low blow, but I guess better in the long run. You can make your life the way you want, without having to compromise for someone who doesn't really want to be there. You've got lots and lots of good wishes on their way, plus lots of support available here. Stay strong, and remember that you have shown that you are the better person. And you have the cutest puppy!
  14. I've never been realistic in my goals. My balance is pretty good, and I've been running on overgrown trails in the hills to get to be very good at falling. Not always so good at getting up :-). After my stroke, I thought that my balance was great until my OT made me try to stand with my eves closed (I fell flat on my face). That was allowed by three months of intensive balance exercises (the local facility had no-one trained in cognitive rehab, but are very very good at physical therapy). I ended up being able to balance on a Bosu on top of a trampoline, so probably better that I was before the stroke. I just could not remember what order to stack them in :-). With our extended winter (it was snowing a in Toronto yesterday), we've rented a treadmill, which has done me the world of good. Both physically (means that I "run" every day or every second day, regardless of schedule or weather) and emotionally (nothing like exercise to get rid of the blues). And I've started repainting the trim in our house, which has been pretty beaten-up over the past 10 years. I've become very aware how much I have to be grateful for, and how lucky I am. It's one of the many benefits of this forum; we all have some positives and we can discuss the negatives without being told that they don't really exist or aren't really important (I know a lot of very "positive" people who drive me nuts with that sort of talk; I guess they mean well).
  15. One of the many things that only other stroke survivors understand :-). It's quite a privilege to be part of this exclusive club. The price of admission is high price of staying a member is also high, but you get to meet the nicest people (both survivors and caregivers).