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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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  • Stroke Anniversary (first stroke)
  • Stroke Anniversary (second stroke)
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  1. PaulNash

    Not sure there is a daytime group here I guess that I'm lucky. My neurologist referred my to a psychiatrist who specializes in stroke, and she referred me to a mindfulness group run by the hospital. The mindfulness course itself was nothing terribly special (much the same as stuff that I had read before), what helped was the discipline of going to the group every two weeks and having someone lead the session. There are a number of local (non-medical) mindfulness groups that meet every week or two, most of them charge about $50 once-off to join, and have someone to lead the meditation. There may well be something like that near you. I am probably going to join one of those groups for on-going meditation -- it's easier to keep it up it in a group with a fixed schedule and a leader, but it's not difficult to do at home.
  2. PaulNash

    I'v had an erratic sleep cycle since my stroke. The first year, I would sleep really badly at night, nap during the day. That settled down to broken sleep at night, force myself to stay awake during the day. These days (three years on) I sleep badly, wake up several times during the night, and usually get up somewhere between 5 and 6 in the morning, feel half-drugged for a couple of hours. Every so often I will sleep soundly; then I usually wake up even more tired :-(. Exercise helps me to get to sleep. but does not seem to improve the quality. Anxiety/depression makes the quality much worse. Every so often I'll have a night when I sleep really heavily, wake up with a sore ear from not moving while asleep. I'll still wake a couple of times during the night, and still be exhausted in the morning. My family doctor referred me for a s sleep study, but they just monitor for sleep apnea, which I do not have. They don't look at neurological stuff at all. At this stage, I have pretty much resigned myself to it, don't really know what else I can do.
  3. PaulNash

    I see a shrink who specializes in stroke cases. It helps quite a lot. Usually for a day or two (but the ongoing thoughts and action plans *do* give long-term benefit). One other thing that helps: I joined a mindfulness meditation group. I don't attend as regularly as I would like, but just taking time to notice and acknowledge my thoughts is a real life-saver at times.
  4. PaulNash

    I'm also extremely glad that you are cancer free, but understand entirely why you would think of not fighting. My last family member of my parents' generation died three days ago after many years with Altzheimers. I spoke to his widow; she said that the last three years were probably the worst of her life (he was bedridden, unaware of his surroundings, basically vegetative), and that she felt nothing but relief that he was gone. I remember feeling much the same way when my mother died (she had Parkinson's, no-one home for the last three years).
  5. PaulNash

    Good for you! I learned a very long time ago to take control of medical matters -- I consider what the "experts" say, but don't take their word as gospel. It helps that I have a couple of second opinions easily available -- my wife is a specialist veterinarian, and her sister is a paediatrician. Between the two of them, they have all my ailments covered 🙂
  6. PaulNash

    It's also the reminder of things that are broken. I can fool myself that I'm OK for a while, then get a great big slap in the face and have my nose rubbed in the deficits. Which makes it difficult to carry on with normal life, which gets a reaction from my wife, who wants me to try as hard as I can. And *that* makes me depressed, and on and on and on ... Fortunately, my memory is broken so I often forget about these exchanges, but there is a bit that sticks and builds up slowly, which does not help.
  7. PaulNash

    Hi Tracy Sounds like you have come a long way, and are probably way ahead of me. Congratulations on turning that page and facing the future head-on. It's a really really brave thing to do. I'm not quite there yet, but you are an inspiration, and your story helps me on that path. You are an amazing person! (Well, I guess that we all are in our own special ways, to survive what we have survived and to cope in the various ways that we do) Thank you.
  8. PaulNash

    For what it is worth, there was an entire episode of "30 Rock" on TV that revolved around people's inability to pronounce "rural juror". So you are not alone, even normies can struggle with this.
  9. PaulNash

    I get the same sort of thing -- much less resilient than I was, far far more sensitize to criticism. I think that in my case I see criticism as a reminder that I am broken in various ways, cannot do things that I used to be able to do, I forget the things that I could not do in the past, and only remember the stuff that I could do. I try to remind myself that I was not perfect before, and that the criticism or anger probably has more to do with the other person's state of mind than with my actions or forgetting or whatever, but it is not easy. And does not always work; and pretty much always leaves a residue that makes the next criticism even more painful. I wish that I had an answer for this -- I can't change other people to criticize less, and I seem to have no way of changing myself to cope with criticism better.
  10. PaulNash

    Thanks. That was exactly what I needed! paul
  11. Since my stroke three years ago, I have been withdrawn, with a flat affect, and often have conversations inside my head -- somehow the words don't make it out of my mouth. My wife has been hugely supportive, but is getting worn thin and gets increasingly upset and agitated. Our financial plans are in tatters -- I am able enough that I get a (small) partial disability payment, but am finding it harder and harder to find work (I'm a freelance network engineer). I am very aware of dragging her down, and making her miserable. I try to open up, chat, be positive but often can't get words to come out of my mouth. I also feel depressed and responsible -- I should be able to bring in a decent income somehow, I'm just not trying hard enough. And from time to time I feel that everyone's lives would have been better if the stroke had been fatal -- the insurance company can't really argue that a corpse can still earn a living, my wife and children would have got over the grief by now, and I would not be faced with having my disabilities shoved in my face day-to-day. I know that most stroke survivors are probably worse off than me, and that I should feel grateful rather than resentful that I lived. I know that many stroke survivors have been abandoned by their spouses, and that I should be grateful that mine has stuck by me (and continues to stick by me, regardless of how frustrated she gets). No, I am not going to kill myself; I would never inflict that on my family. But then there are times when it all gets too much. I can usually get out and go for a run (my legs still work OK), or try to take a nap, or just wait until I forget how I am feeling. This time feels different; it's probably just a cumulative thing, but I feel that I cannot cope. Rationally, I'll forget this specific incident at some stage, couple of hours or couple of days, but the general misery will linger on, adding to what has come before. I see a psychiatrist at the local stroke hospital every month or thereabouts. She is always upbeat about how well things are going, and tries to offer solutions, but cannot really fix what is broken (mind or mood). Sorry to dump like this, just wanted to express what I was feeling to an audience that might understand. I'll be OK (feeling a bit better already for getting it out in the open). Thanks for your indulgence. paul
  12. PaulNash

    I usually hope that I just won't wake up again. Ever. Not very inspiring, but one of the things that helps me keep going is that knowledge that at some point or other I will die. I have no idea how many years it will take, but I'll get there eventually. I have a cousin who died a year ago from a massive stroke -- the doctors think that from the onset to death would have taken less than 3 minutes. We're going to Philadelphia this weekend for her tombstone unveiling. I envy her. My family are glad that I am still alive, and I do what I can to keep alive for their sakes, but ... Sorry, this is not very positive (not positive at all), and probably not helpful, but I have wanted to get it off my chest for a couple of years, and cannot tell this to my family.
  13. PaulNash

    I'm glad that the hearing went well. You have my sympathy -- hearing an expert spell out that you are broken in some significant way ("unemployable") is a huge shock. I still battle with accepting this on a regular basis. Fights with insurers are the worst. I had them at very regular intervals for the first couple of years, and we kept making the point that the stress and demoralization of undergoing batteries of tests and being forced to face the deficits (rather than what was actually working) was quite counter-productive. Fortunately we never ended up in court. Holding thumbs while you want for the letter. Please let us know when it comes.
  14. I have this on and off. I have a scattering of lesions all over my brain, so I can't point you to any specific area. As soon as I am at all tired or stressed I start losing words, names, thoughts. When I am rested (doesn't happen that often, sleep is also erratic), I still lose them but less frequently and am able to cover up. As far as I know, Aphasia is losing words. I knew someone many years ago who had Nominal Aphasia -- could not remember people's names and often could not remember what things were called.
  15. PaulNash

    Good luck! Make sure that they know that you'll fight them all the way if they try to do anything stupid. And that we'll fight with you.