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Stroke Survivor - male
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Everything posted by PaulNash

  1. I had a vertebral dissection three years and a few days back, left me with a quadrantanopia and a badly damaged memory. Also fatigue, low self-esteem, and the other usual suspects. I am lucky. I have a supportive wife, who has acted as my guide and advocate through the medical system, come up with DIY rehab plans, looked for help for deficits, and generally done everything that she could to help. However, elephant in the room is conversation. Because of the memory issues, I find it hard to follow a conversation, to in company I tend to site to one side, listen and nod politely, and people are really happy (because they mostly want to talk). However, in one-on-one situations (especially with my wife, and especially x2 when she is upset and need support), I just sit there are think "what should I say", "what would be appropriate here", and just block. This makes her even more upset, she sounds off at me, I try harder and am less and less able to compose a sentence, much less a conversation. I know that these sorts of things can be overcome, and one can develop strategies to respond appropriately or even start a conversation, but I have no idea where to turn. In a work context, I can discuss technical matters quite happily, albeit referring to my notes. It's the personal stuff, and ESPECIALLY with my wife, because of the social aspects and also because they are fare more emotionally laden than the mundane stuff. If anyone has ideas about how to get started, or pointers to any resources about how to get past this, I would love to hear them. I'm at my wits' end and despairing about this. paul
  2. PaulNash

    Interesting that you take carbamazepine. My wife has been on it for most of her life for epilepsy. Looks like a useful all-purpose drug :-). I'm really glad that you have something that works.
  3. Over the past three years I have found out a bunch of stuff about memory. I use to have one of those off-the-charts memories for every detail of every thing/conversation/person. Now, bu the time I open the cupboard door, I struggle to remember what I was looking for. I'm especially bad with people's names and contexts. When I am first introduced to someone, I usually say "I have a terrible memory, you'll have to remind me next time we meet". A surprising number of people say "me too". And no-one is upset when I recognize a face and say "I know you from somewhere, remind me please". This is without telling them about my stroke, or anything else. Hang in there, things get better. Depending on the damage (location and severity) some things will improve, some will stay the same, and some will get worse. I guess that is what life is like anyway.
  4. PaulNash

    I'm with Scott. Dedicated, persevering, stubborn.
  5. Tracy, good for you! Nothing wrong with quirky, a lot right with the moral compass and standing your ground.
  6. They seem to run in families. My mother had three brothers, two had Alzheimers, one had Parkinson's. In all four cases, it was brutal for the patient, even worse for their families. My father died of a heart attack; Saw his doctor for "indigestion", doc sent him to hospital for a check radiograph just in case. He died shortly after the rads; according to my mother (who was there) he just slipped away painlessly. She was never one to sugar-coat, so I believe her. If I had to choose, I'd rather go that way. Or with a needle. In a slight weird way, this conversation makes me feel far more positive about life! On a more upbeat note, went to a lecture about migratory birds yesterday. There are some absolutely gorgeous birds that fly up through the US and Canada at this time of year. So if you can, look out of your window for feathered migrants taking a rest in a tree, splashing in a puddle, or just flying past.
  7. I looked at the video. It is amazing how people fail apart under pressure, even when they know what is going on. Now I know how cops and courtroom lawyers manage to get the weirdest confessions from people. Thank you. I'll show it to Linda.
  8. I guess that that is the point; they have no idea what this new life is like. They might try to imagine it, but they don't KNOW it. Even my darling wife, who does a huge amount to help me, and has found many ways to smooth the path, cannot know what it is like. And I hope that she never does :-). I started out taking everyone's well-intentioned advice seriously. Mistake. Then I rejected everyone's advice because they did not have a clue of what I was going through. Mistake. Now I evaluate advice, because sometimes there is a gem hidden in there; some ideas from my wife and from a speech/language pathologist have made my life FAR easier. Still not easy, mind you, but easier than it was.
  9. I know that people are trying to be encouraging, and that it is all well-meant. I just cannot prevent the internal knee-jerk reaction. And yes, it rather invalidates what we go through. On a different but related tack: I had a discussion last week with a woman who had a major concussion six months back. She thinks that she is slacking off because the house is a mess, and she doesn't have dinner ready on time any more (she's in her 70's and very old-fashioned). I explained to her that it's not "just a concussion", it is a traumatic brain injury, and that it is not at all surprising that she cannot keep up, that she forgets things and that she is always tired. I suggested that she have a long talk with her neurologist, or that she considers finding a new neurologist. Met her again this week looking *much* more composed, after a long consult with the neurologist, who finally explained to her and her husband when the impact of a concussion can be, and why she feels the way that she does. She doesn't get any more done in the day, but neither she nor her husband thinks badly about about. He has apparently even started to help.
  10. PaulNash

    It's quite interesting what can be inherited :-). And I though that it was just things like hair colour.
  11. Kelli It's a joy to see someone who recognizes that death can be a relief. Canada allows doctors to "terminate life" (ie. euthanize) patients in the last stages of a terminal disease. Linda and I both have living wills asking for this. I saw my mother deteriorate over may years from Parkinson's, and I would hate to inflict anything like that on my family (or on myself).
  12. PaulNash

    That is so great. What is the title; I'll have to get copy. Don't have a Kindle, but I'm sure that there is a app for that.
  13. Nothing yet, as things have been hectic. However, Linda is dying to South Africa tonight to visit family for two weeks, and we'll be communicating by email more than anything (time zones, schedules, cost of international phone calls), which gives us a perfect start. So your idea came at just the right time. My hope is that it'll give us a new way of talking (email/text/notes) *and* if we are very lucky, that it'll break the logjam. I've also started on a CBT course run at Sunnybrook Hospital. 5 of the participants (including me) have had a brain injury, 4 concussions, 1 stroke. One was a fairly frail old lady who was really upset because she just couldn't seem to get things done around the house. I spoke to her as we were leaving, turned out that her doctor had dismissed her concussion as "it's nothing serious, just a concussion", and told her to rest for a few days. No MRI or serious neuro exam. I told her that a concussion is a brain injury, that she needs to demand a referral to a neurologist, and that she should find a new family doc. Don't know whether she'll talk to her doc, but she was SO relieved when I told her that she wasn't just malingering; that she had a genuine bona-fide brain injury and that she must give herself time and space, and tell her husband to give her time and space. It makes me really angry when brain injuries are dismissed like that. "But you look fine". Several of my friends had the same sort of reaction after my stroke: "thank goodness it wasn't serious". Meaning that I can walk unaided (provided I'm not tired), can see well enough to drive (albeing with a vision waiver on my license). The lack of memory, well that's not visible so it doesn't really count. Plus there's the standard "I also forget things" response -- the is forgetting and not being able to form memories. Sigh
  14. I agree. People feel what they feel, and process things in their own way. Folk who want to help should offer support, not instructions. That said, I'm sure that her sister is trying to help, just doesn't know what is most appropriate. I know that I do that sort of thing a lot, when I know that someone is in pain and I want to help but don't know what to do. But then sometimes, you have to follow Atul Gawande's advice: " don't just do something, stand there".
  15. PaulNash

    I like the state line thing. There is a town on the Quebec/Vermont border where the public library has one door in Canada, one door in the USA.
  16. PaulNash

    Sigh. Two really solid nights' sleep, then it wore off. Back to waking in the small hours, feeling tired and worn out and miserable. Sigh At least I have a booster shot in a couple of weeks' time. Meanwhile, it's back to the drawing board ...
  17. PaulNash

    Sounds like an absolute win-win!
  18. PaulNash

    Alas! All good things come to an end. I was up again around 5:00 this morning, tired, mids racing, unable to get back to sleep. Sigh. Maybe I need shingles-vaccine shots every two or three days :-).
  19. PaulNash

    I'm not frightened of shots -- when I was a kid I was massively allergic to almost everything (pollens, grasseed, dust, you name it, I was allergic to it). So or family doc gave me a shot of a de-sensitising vaccine (basically a diluted version of everything that I was allergic to) twice a week. They did not seem to have any impact on my alergies, but did make my arm swell up enough that it was almost impossible to put on my shirt. And they hurt like hell. As a result, I can tolerate having almost anything injected into me, in almost any volume, without flinching. So a vaccine shot once a month, so that I can get a couple of decent nights' sleep would be fine 🙂
  20. PaulNash

    If you've got access to Netflix, you can find them there. If not, probably BBC or PBS, a nature channel, or a library.
  21. PaulNash

    >> So much going on! I lost count! That's the whole point. You can only focus on so much. I've seen it before (pre-stroke) and missed everything then, but had forgotten the details when I watched.. I just knew that I had to ignore the ball-passing, so I spotted everything except the player leaving. It's a very interesting exercise. A lot of fun to watch peoples' reactions: "gorilla? what gorilla?".
  22. PaulNash

    I just had two nights of about 10 hours' sleep! I had a singles vaccine two days ago, and it knocked me out. Almost fell asleep over supper the first night after the shot, went to bed around 8, Linda woke me when she came to bed much later so that we could strip and remake the bed (I sweated gallons), woke up around 6 the next morning (a first for me since the stroke; I'm usually up and about before 5). Last night I went to bed even earlier, got about 10 hours of sleep. No sweating this time, just a tender shoulder. Still feel a bit groggy, but *far* more wide-awake than normal. I had forgotten what it feels like to have a solid night's sleep. Maybe I need to get a booster shot regularly, like every week 🙂
  23. PaulNash

    Try to find some of David Attenborough's nature movies. There is at least one about how animals raise their young, everything from baby turtles and penguins to baby lions (totally adorable) and baby eagles (not so much). Wonderful to watch. And some of the cutest creatures you will never get a chance to see in the wild.
  24. Tracy, that's a wonderful idea! I really like it. It also means that we can have "offline" conversations; leave note for each other about how we feel about them, and so on. I will start it, and see how it goes. paul
  25. PaulNash

    Scott, thanks for the recommendation. Our library has a pile of their books, I've placed holds on three that I picked at random (none in our local branch, unfortunately). I also used to read non-stop. Now it depends on when I read. At bedtime, I can usually make between one and three pages (if I get that far) instead of half a book. During the day I can read somewhat more (maybe even a chapter if I'm well rested and take it a bit at a time). And when I pick them back up I usually have to backtrack because I can't remember the plot. As I said somewhere, it makes old favourites new and fresh :-). I'm trying to make a list of positives about my stroke: I waste less time sleeping I can re-read books without plot spoilers I can get in a tiring run in much less time I can block out irritating visual distractions by putting them into my blind area I have an excuse to leave my in-laws' dinner parties early I have an excuse to hold *very* short conversations with people I don't like. I know when I am tired (various limbs start to misbehave)