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Stroke Survivor - male
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About PaulNash

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    Senior Member
  • Birthday 05/18/1958

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  1. >> There are days I honestly wish I had not survived, but I just keep working through those feelings. I feel that way too, from time to time. The feels take less and less time to pass, and occur less frequently over time. It still sucks, though
  2. I think that anyone who has had a massive trauma will be fearful and anxious at times. I know that I do. It's normal. Sometimes I fight, sometimes a find a place where I can just let it wash over me. Either way, the feelings pass.
  3. In my case, my sister-in-law is a huge help and support (she's a well-respected local paediatrician, and got me in to see a bunch of top-of-the-line specialists). She's also a really nice person. So I can't just say "no, I'm not coming". And I enjoy (some of) the company while I am able to. I put up with the crap because I need those people in my life. I just have to remember to pace myself, duck outside for a break when I start to feel overloaded, and remember not to tell any anecdotes as I'll lose the thread half-way. Instead, I've turned into a "good listener' :-). The "don't play the stroke card" stuff usually comes from people close to me when they are battling with something and need help. I have come to realize that it's frustration and anger aimed at themselves or their circumstances, but expressed at me. So I take a deep breath and let it pass me by. And it is nothing compared to my internal dialogue, which is far more accusatory than anything that anyone outside could say. "Cordial but distant" sounds like a really good technique for a bunch of the people around. I'll try it and see how it works.
  4. PaulNash

    That is amazing (the trip). Really happy that it worked out, and congratulations on the leg strengthening.
  5. I get much the same response from a lot of people: "don't play the stroke card" or "you're just avoiding responsibility" or whatever. I used to get miserable and upset; now I'm at a point where I am able to shut up and ride it out and think how grateful I am they *they* don't have to go though this. And I take naps and little time-outs when I can. Passover is coming up, with lots of _huge_ get-togethers with extended family and their friends (with whom I have very little in common). At these things I usually try to tune most of the noise out, so that I don't overload, sit quietly and hope that no-one notices that I am there. And if I do get dragged into lots of conversations, I try to find a polite opening to duck outside or into another room or any place quiet where I can sit by myself and recover. The good bit about those sorts of events is that it takes an hour or more before anyone notices that I am not there and comes to look for me, by which time I've usually go some strength back. These things were tedious before the stroke, they are (literally) unbearable since. You just have to look after yourself; it doesn't help anyone to be a martyr.
  6. The "experts" keep telling me there's nothing wrong with my brain from the stroke (as far as cognitive procedures go) You may be talking to the wrong "experts". I had a consult a while back with a cognitive neurologist. She took a look at the MRI and CAT scans, and then asked whether I tried to read full-length books, and what I found when I did. I told her that I did, but my fatigue always got the better of me, and that I would put them down, lose interest, and general just give up on them. I always ascribed that to being tired and lazy; she explained that there is a small part of the brain that "chunks" up text, which makes reading long-form content easy, and that in my brain this bit is dead. Hence no ability to read full-length books. She advised me to stick to short stories. I have a similar issue with talking. I'm OK when I have something short to say, but as soon as I try to recount an anecdote, I lose track of what I was saying, where I was going, and what the point was. I either ask for a reminder or just shut up. I'm used to getting strange looks at social gatherings, and have learned to ignore my wife's exhortations to talk to people. I listen, and they seem happy to have an audience who doesn't want a turn to talk 🙂
  7. >> When I’m answering a question and start to answer, after a few seconds I’ll stop mid sentence and ask ‘what was the question?’ Been there, do that all the time. When I forget that my memory is broken, I'll start telling an anecdote in company; then have to stop part-way through to ask the unfortunate audience to remind me of how I started on this. People who know about the stroke shrug (and avoid me in social situations :-)), those who do not just think that I am very very weird. I have a fix, though. I usually just listen, nod and smile and let other people talk. It seems to make them happy, and keeps me out f trouble. My wife nags a bit about how passive I am being, and how I don't interact enough. I guess you just cannot win.
  8. That was amazing! Foolhardy, perhaps, but amazing. You've shown yourself that you can do it if you have to, even if the cost is high. Maybe ask a local kid to wash it next time, but remember that you did it, against all the odds, and be proud!
  9. PaulNash

    Congratulations! That is such good news!
  10. PaulNash

    I have gained humility, and the ability to call on and rely on others. I used to be quite self-sufficient and was the person who always helped others, but would or could never accept help. I how ask for and accept help, which makes me far more human and makes relationships far more equal. Like you, I have always relied on my brain, this has taught me to give my heart priority.
  11. PaulNash

    Your support is and will be a huge boon for him. He is really lucky to have you. From my own experience (and everything that i have read), he is likely to improve quite significantly over the first 6 months or year, and then slow down a bit. Don't give up at that stage, the improvement continues pretty much indefinitely. Sometimes it is so slow as to be almost imperceptible, sometimes it appears to go backwards, and occasionally it leaps forward. It keeps on improving. Support him, push him, have patience. And look after yourselves, this can be a very trying time for all concerned. Good luck
  12. PaulNash

  13. PaulNash

    Hi Watson Give it time and look after yourself. My stroke was just over 2 1/2 years ago, and I still see improvements. There were significant improvements in the first three of four months (like getting my left leg to behave), and I started to adapt my routines to my new self. I was back at work within two months (I'm self-employed, so no sick leave) and look back in horror at the mess that I made in that time. I managed to lose most of my customers (which I would have done anyway), but I think that overall it was probably a good thing from rehab perspective. Yes, you're weak and probably easily fatigued and a burden. Most people will want to help (at least for a while); friends and family will want to keep on helping. It's your boss' problem to deal with work distribution and whether or not to get a locum for you. I also get frustrated and anxious and feel like a burden, but friends and family have made it clear that they would rather have me as I am than not have me at all. I don't always believe them, but it helps to keep me going. From my experience, I would suggest that you try to return to work once you get the headaches under control and once you are able to get some sleep (which may take time; my sleep is still messed up). Make it clear that you are still an invalid, that you'll work slowly and probably cannot do everything, but that by actually working you will probably improve faster. Of course, this is all based on a sample size of one, your mileage may vary. Good luck, and keep talking. This is a great place to hang out. paul
  14. Hi Dave Welcome to the club that no-one wants to join. It's exclusive, the cost of membership is high, but it has some of the nicest people you will ever meet as members. [ disclaimer -- I am (was?) an engineer, and am useless at "touchy-feely" ] I had similar experience about 2 1/2 years ago. I won't bore you with the details, suffice to say that however "mild" your stroke my be compared to others, it is still a stroke and is still a massive insult to your brain and your self. From my experience: give yourself lots of time and leeway to recover, push yourself to try to overcome deficits (and keep pushing, improvement mostly takes time and repetition). The good news is that things can and do improve. The biggest factors, as far as I can tell, is time and repeatedly trying to do stuff. My left leg used to drag and turn outwards (proprioception rather than motor issues), so I had to remind myself to glance down and see what my foot was doing. After a month or two it started to behave, and is OK now unless I get very tired. I walk and run as much as I can, and keep taking quick peeks to make sure that it is still working properly. Some issues take far longer to improve. My memory is still atrocious (like 5th percentile), but is better than it was two years ago. However, over time one can learn compensation strategies -- I keep copious notes, use my phone calendar and to-do lists a lot, explain to people I meet that I'm unlikely to remember them and why that is that case, so that they are not insulted the next time I bump into them. Again, I try to remember stuff before i dig through my notes ad diaries. I think that it is helping a bit, but cannot measure easily. And some will never improve. I am partially blind, and the visual fields have remained rock-solid constant since my stroke (I have to get them done every year for my driver's license). I have learned to compensate, and flick my eyes around more so that I don't bump into things. Take care of yourself. Take lots of rest breaks, or snooze during the early afternoon. Try not to be to hard on yourself, buy do keep pushing. And feel free to vent, ask for help, or anything else. That's what makes this place what it is. paul
  15. PaulNash

    Wow. You write beautifully; I wish that I could take some of the pain away from you.