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Stroke Survivor - male
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Everything posted by PaulNash

  1. Ed This just came to me, thinking about what you wrote: I do look up to people just hard after being the person that was the Shell answer guy I think that we all struggle with this. I know from my own experience, how easy it is to see your own struggles and your own failings, and think that everyone else has got it just right. Truth is that we all struggle, we all fail, and we are all very aware of the struggle and failure. And, yes, it is worse when you were "the answer guy", the person who could fix anything, the provider, the rock, whatever. We still are those people. Maybe not in the same way, but we are still there. We can still do those things, albeit differently. We can still inspire others, comfort them, and love them. And, bonus time, we can accept support, and help, and especially love, from others. It's not a failing, it's not a crime. Accepting what is offered is a gift to those who are offering. It can be really hard after being "the person who supported everyone else", but there is no shame, no failure. It just is. Think Zen, try to accept things as they are and work with them, rather than fighting. Yes, you can still improve, not give up, help others, and mourn what you have lost, but you can grow and flourish in new ways, bringing new gifts to those around you. Thank you Ed. Without you, I would never have realized this. See, you still are "that guy"!
  2. Thanks for posting. Absolutely shocking! Can you invite her to join us? " I am hoping to hear about other people and their "dealings" with this trauma." Sounds like she is looking for people to share her story and help her (or at least provide companionship).
  3. What I meant to put in, but forgot, is that anything (music, bible, running, staring at a river) that can let you silence the daily noise works really well. I used to get this way running, back when I was able to run far. The world just tunes itself out, thoughts silence themselves and there is just the immediate present.
  4. The way that I understand mindfulness meditation is that you try to clear your mind. Thoughts will pop up, you examine them, acknowledge them, tell them that you'll get back to them later and then dismiss them. It sounds weird, but after a bit of practice it works. You acknowledge thoughts one by one, until your mind is blank, and then you just sit for a while. The actual relief comes from acknowledging your thoughts, whatever they may be, and however you may feel about them. No doing anything about them, or giving them any sort of value, just saying to yourself (or to the thought) "OK, I see/hear you, you are telling me _whatever_, I will get back to you later but right now I need some space". It sounds a bit silly, but it works, and over time you get better and better at it. Then your mind can just float free without thoughts and feel good. With practice I can do it on the subway, in the dentist waiting room, whatever, still somewhat aware of what is going on around me. Works really well to still an anxious mind
  5. Hey Ed; I hear you and I sympathize. I'd guess everyone else does too. Yes, we feel like crap a lot of the time, loss, frustration, anxiety, pain, regret. But there are also good moments, and I try to treasure those. It's a roller-coaster. I've been on a mindfulness course; the meditation doesn't change anything about my situation, and doesn't always change how I am feeling, but does help to calm me down. If you haven't tried it, see if you can find someone to teach you. It may help, needs no pharmaceuticals, can be done anywhere, and as far as I know id legal even in the Southern states of the US :-). Even just focussing on my breathing while sitting still helps to tune the rest out and bring some peace back. I'm slowly accepting that things are as they are. I may not like them, but I have to choose my fights carefully, especially because of having a limited energy budget. In the bad times I also try to remember that things will improve at some point, I just don't know when or how. One thing that I learned in my ultra-marathon running days: when you are running out of steam, take things one step at a time. Don't think of having to run *another* 20, 30, 40, km, just think of the next 1km, 100yards, 10 steps, 1 step if necessary. Then think about the next one step. And then the next one. Just one at a time. It's like the old joke about how to eat an elephant: one bite at a time. And there are always times when none of this works, and I just give in and embrace the suck. Let myself be pulled under and embrace just how horrible the situation is. I don't do anything about it, just feel it and acknowledge it and sob my eyes out. Eventually I feel completely drained and empty, like I've shampooed and vacuumed my emotions, and then I pick what's left of me up and start again. It isn't easy, not for any of us, whatever our public faces may say. We are all in a horrible horrible situation, whatever the details may look like. But we have also been tough enough to survive until now, and are tough enough to keep going. It is not always pleasant, but the good bits can be good enough to make up for the bad.. At least that is what I tell myself when I am feeling like *beep*. Strength and peace coming your way, and truckloads of love.
  6. Quick datum, reinforcing the above. Just spent a couple of hours brainstorming somebody else' problems (spinal degeneration) with them. Getting in the company of others and away from my own moods left me feeling back to normal. These things come and go, just sent to test us at random intervals.
  7. What I have learned over the past four years (how time flies when you are having fun :-)) is that these things come and go. So when I am down, I focus on making it through the next minute, then the next two, then the next five, then the next 1/2 hour, and so on. It's a technique that I learned in the days when I used to run seriously long distances. If you focus on the finish line, it gets overwhelming. Instead, air for the next lamppost or tree or whatever. Once you get there, aim for the one after that. Lather, rinse, repeat. Still works for me. Keep on for another 5 minutes; 10 minutes; then 1/2hour. Next thing I know, it's bed-time. And tomorrow is usually brighter.
  8. What a horrible set of mistakes and wrong paths. At least she's getting the correct treatment now. Speaking from experience, improvement is continuous, although not always visible. Most dramatic improvement in the first year or two, but it does keep on. Your daughter is lucky to have your support. I found that taking things a day at a time helped me with my recovery; I had significant improvement in most areas over the first three to six months, and still see improvements years later. We are here to support you both, and obviously we have an idea of what you must be going through. Please lean on us.
  9. PaulNash

    Hi Brokentechie I also do IT work, stroked 4 years ago now (IIRC), but in my early 60's. Stroke has had a significant impact on the type of work that I can do, so I have shifted to doing a *lot* of cabling work (I have terminated so many network cables in my life that I can do it with both eyes shut and both hands tied behind my back, never mind a trivial matter like a brain injury :-)). My various customers know that I have to take copious notes when I work, and that I am much slower than I was. Some of then actually find this comforting (especially the note-taking part). One thing that *has* helped me enormously is outsourcing stuff that I am no longer comfortable with, and refusing work that I can no longer do. I guess that over time you'll find what you are good at and what your "sweet spot" is. OTOH, a lawyer whom I met (similar stroke to mine) has dropped law entirely and now focuses on music performances, which used to be a hobby of his. He seems to be happier than he was before his stoke, as he is following his passion rather than his bank balance. Any yes, it does suck. We all understand that, and are here to hear you. I'm not that good at the touchy-feely stuff (I'm an engineer, after all :-)), but others here are.
  10. Kelli You are not alone. Not only are we here to listen and support, but a bunch of us (me included) feel exactly the same way. My approach is to try to remind myself "this, too, shall pass". Which is does, usually sooner, rather than later. I wish you (and all of us) strength and peace. paul
  11. >> But, are Willis and I the only ones? No, you are not. I often think that things would have been far better for everyone if my stroke had been fatal, and often this about suicide. However, I would never do it because, however much of a burden I may feel that I am, I know that the impact on my family would be enormous. I mentioned to my wife once that I thought that everyone would have been far better off is my stroke had been fatal. She was so upset at the thought that I never mentioned it again, never told her when I feel that way. I hate hiding things from her, but I don't want to add to the burden. So when that happens, I keep my thoughts to myself and plod on. Like all things, these thoughts eventually pass. paul (in a pretty gloomy mood right now, after running into brick walls non-stop for the last few days)
  12. You must be made of *very* tough stuff to survive that long with no treatment. I'm also amazed at your discharge. My first hospital visit (drive-in with my wife) was eventually diagnosed as a migraine as the symptoms disappeared, but they still did a CT scan (found nothing) and told my wife to call an ambulance if there were *any* repeat symptoms, however mild. Two days later a few more clots dislodged, she called an ambulance. All hell broke loose in my brain on my way to the hospital; I was rushed through emergency for imaging (saw some damage but could not find the dissection), then admitted to ICU & pumped me full of anticoagulants. The found the dissection late the next day, stayed in hospital for another week before they felt I was OK to be discharged.
  13. PaulNash

    Will I think that making light of our situation is essential. It's when I take it seriously that I get depressed. Humour isn't the answer, it's the question. "YES" is the answer 🙂
  14. Also had a left vertebral artery dissection, scattershot of blood clots through my brain. I can't give you chapter and verse (memory issues). Short-term memory appears unaffected (but then its good enough that they cannot actually measure it). Translation to working memory is mediocre. Translation from there to long term memory is near as damnit non-existent. Existing long-term memory is still ok, but not as good as it was. I can often remember images (so I can visualize a map but not remember directions of street names). So the problem is mostly getting stuff IN, but some memory lost and erratic when getting things OUT. Upper right quadrananopia (both eyes). PITA, as I have to be re-tested every year to keep my driver's license. I suppose that I should be grateful, as a couple fo years earlier they would have just pulled my license; Ontario now has a "vision waiver" where you can keep your license even if you don't meet the vision standards provided you have a functional driving assessment and your vision deficits stay constant. Iso having jumped through hoops to get my license back, I now have visual field tests every 12 months with my amazing optometrist. Proprioception is erratic in my left leg, foot turns out when I get tired. Leg feels tired far sooner than my right leg when I run. I drag or stumble on it sometimes especially when tired. Balance is sort-of OK, unless I am tired. I find in almost impossible to hold a "polite conversation". I can generally talk about something specific (if I'm not tired), but find that in company I just sit and cannot think of a damn thing to say. And if there are several people talking (family dinner) I cannot differentiate between them, it all just turns into a blur. Biggest impacts on my life are memory (huge) and social issues. Plus fatigue (especially in company). Way too much information,
  15. PaulNash

    As someone on the other side of the fence, I can relate to that. After the first three months, I thought that I was reasonably OK except for partial blindness. Then over time I found that I get serious cognitive fatigue if I think hard for more than a short period. Then I found that even un-fatigued, my thought processes had gone from ultra-rational and logical or erratic. Also that my working memory was erratic and my long-term memory almost non-existent. Along with the, my self confidence has pretty much evaporated. The good news is that, while my memory and vision are not going to improve, I'm better at managing energy and resting, and my persona has improved, as has my confidence. It's hard to know whether things work better when my wife pushes me to test my boundaries, or whether it's better when she understands how difficult they can be to overcome. Probably both, at different times. I hope that she will never know what it is like, and I hope the same for you. I *do* know what you mean about grieving. I have finally started to mourn my old self, to cry about my losses, and to slowly try to internalize the changes. It's not easy for me, and I'm sure that it must be enormously difficult for you. I have enormous admiration for spouses of stroke survivors (strokers? strokers?) I found meeting a couple of other survivors helped me get some perspective. This is my only long-term stroke relationship, but I have chatted with several others over coffee or a meal. I know that Canada is a big place, but if you are somewhere around Toronto and want to chat, a shoulder to cry on, or to vent, give me a shout.
  16. PaulNash

  17. Welcome to this group. It's a great source of advice, good companionship and comfort. I had much the same: vertebral artery dissection, clots gave me a minor stroke that seemed to clear up in the emergency room, two days later had a second dose of clots that left me in hospital for 10 days (I think; my recollection is a bit hazy :-)). Also left me with a smorgasbord of neuro issues.
  18. PaulNash

    Woo Hoo! That is great news!
  19. PaulNash

    Reading the board this evening, and especially Alan's poem, made me glad in many ways that I had my stroke. I would still rather not have had it, but I have met so many amazing people, mostly here, but also in the medical and rehab services. All of you make me realize how shallow my life was in so many ways before my stroke.
  20. PaulNash

    made me cry. Thank you, that is beautiful.
  21. PaulNash

    I guess that I was lucky. My wife pretty much camped out at my bedside for the first week, kids cams to is it after school, and my sister-in-law (doctor) made sure that the medical staff checked up regularly. What I wanted more than anything was an idea of what the next few days, weeks, months would be like. Longer than that would have been too frightening, but an idea of the process and timing of getting from the hospital bed, unable to sit up unaided until I was out of rehab, about to walk again. A realistic timeline, rather thin thinking that I'll be right as rain in 1 week or two. Telling me that I would need to take lots of regular (and unscheduled) naps for the next year, thoughts would be jumbled up, that I would be incoherent at times, unable to follow conversations at others.
  22. PaulNash

    Wow! That is an amazing story -- one of those situations where all the ducks are in a row and everything goes right. You are a lucky lucky man, and your daughter deserves a huge amount of praise for recognizing what was going on and acting so quickly. This is a great place to hang out, chat, talk to people who know what you're going through, and find solutions. Welcome.
  23. PaulNash

    Happy Anniversary, Scott. May you both have many, many more!
  24. PaulNash

    Owww! That sounds really nasty! I've cut myself often (pre- and post-stroke), but never as badly as this. I hope that it heals soon and clean.
  25. PaulNash

    Anne has a LOT of anxiety and can't be left alone for very long I also suffer from significant anxiety. I've always bee mildly anxious; since my stroke it has been overwhelming at times. I have learned a few things that help me, some straightforward like stopping, closing my eyes and breathing slow and deep, others are a bit more analytical. The breathing thing seems to work well for a range of people. It's easy. Close eyes, breathe as slowly and deeply as possible. Focus on the feeling of the air flowing in and flowing out. As simple as that. I do it for as log as it takes to feel calm (probably 2 or 3 minutes at most). The biggest hurdle is remembering to do it.