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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. Wow! There's a tidal wave of sympathy heading your way from Canada! You are far from alone. Having dealt with disability insurers , I will send all my psychic powers South to help speed up your hearing. My stroke was just under two years ago, so I'm a comparative noob, but I can relate. Some aspects of life are difficult to navigate with cognitive problems but no (or few) physical symptoms. Many people are intolerant, as they do not _see_ a disability. I have had co-workers think that I am just goofing off or drunk on the job at times, and fatigue can be a major issue. I used to be a master-multi-tasker (hey, that rhymes!); now I have retrained myself to work on one thing at a time and make copious notes along the way, so that I can remember what I am doing. I don't have any sage advice, just know that you are not alone, and that there are a whole pile of us out there who are rooting for you. And you will aways find love and friendship and sympathy here.
  2. Trust me, we know what you've been through and are still going through. Not in detail; we are all as different as our strokes, but we know big picture. It's one of this things that gives me great comfort about this site. Even just reading through old threads make me understand that there are people out there who understand how it now feels to be me; viscerally, from the inside. I get a lot of love from my family, without whom I would not survive, and they try to understand, but I hope that they never will. Because the only people who truly understand are those of us who have been there. The good news is that things do get better. You adapt, you forget, you come up with strategies to cope, and you can have the pleasure of discovering old delights for the first time, all over again :-). And most people are kind and compassionate; you get to see a lot of the good side of humankind.
  3. Don't apologize for feeling down or needing help. You had a major trauma, not surprisingly that you feel miserable. It doesn't matter how much worse anyone else' stroke is, any stroke is bad enough that you can justifiably mourn your losses. Give yourself time; I know that after more than 18 months I still don't *really* believe that I had a stroke, and I still get mad at myself for forgetting things and for getting tired easily. Cut yourself some slack, talk to people, both here (which is a wonderful place) and in real life. Enlist family, friends and colleagues to help, even if it's only little things -- my children know to remind me quite obsessively about anything that I need to do, because I have major memory issues. They started off skirting around it, but now seem to enjoy being my memory. Your daughter is a bit young for that :-), but there will be others helping to fill those gaps. The trick is to allow yourself enough "poor me" moments that you don't feel like you are being martyred, but not to make it a habit. You have a whole new circle of friends here, make use of it.
  4. FWIW, in Ontario your license is automatically revoked after any sort of brain injury (doctors, hospitals and optometrists have a duty to report to the MTO). Getting it back involves having visual fields checked. I have lost about 25% of my visual field (upper right quadrant), so I had to apply to the Ontario MTO for permission to be tested. They needed two sets of visual fields done at least 3 months apart. After a review, they allowed me to do a test, which consisted of an interview & office cognitive test by an OT, followed by a road test in a dual control car with a specially licensed examiner and the OT present. I was required to give a running commentary of what I was seeing, was aware of around me, what I was doing and planning to do. The whole thing lasted about an hour, left me exhausted but with a license. I would rather have this system than one where people can just get in a car and drive. If in any sort of doubt (or even if not in doubt), get an OT's opinion and get re-tested before you drive again. For everyone's sake!
  5. The elephant in the room: "now the wife wants to go". I'm not a psychiatric professional, have never played on on TV, but have seen a bunch of them in the last two years. Do you know why she wants to go? Do you talk? I would try to get her (or the two of you together) to talk to a professional as soon as possible. She may well be confused and upset and wants to get back to before your stroke. The sooner the better, before she paints herself into a corner. Is she at all involved with your rehabilitation? If not, try to get her to come along to rehab sessions (if you have them), get her to talk to your neurologist. If she understands the deficits and the prognosis, she'll know that you are not just goofing off, and will have more realistic expectations of the path forward. Does she have *any* idea at all about how messy divorce is? And in a situation like this, it will be even messier. Apart from anything else, her chances of getting any significant spousal support is probably about nil. Plus the kids will hate her for abandoning you when you are in need, and she will hate herself when it all sinks in. Once again, she should probably talk to a marriage counsellor, especially one with experience of traumatic brain injury or chronic illness. Not sure how you would find one, maybe your neurologist or family doc would be able to help find someone. I hope and pray that I am over-interpreting your comment, and will be horribly embarrassed. If not, I she will then make the correct decision (whatever that may be) for the entire family. paul
  6. Conceiving a baby is comparatively easy; there is AI and IVF if the two of you are unable to conceive naturally. You do *NOT* need a donor, you need post-natal help. Think about calling of family (both yours and hers), friends and the various aid services around (not sure what there is in the US, but there has be be something). If she is set on a third person, get some professional counselling BEFORE you are pushed into what could be a tricky journey. It might turn out to be a wonderful experience for all concerned, but I think that preparation is critical.
  7. Memory issues really suck. My issues come and go, depending on how tired I am, how much is going on, and so on. My sense is that cognitive overload just blows everything up, memory, emotions, the whole catastrophe. It is quite disconcerting and depressing, but one of the joys of the memory issues is that I forget how shitty they make me feel :-) I'm still trying to find something that works as outsourced memory for me, between post-it, electronic to-do lists, sending myself email. One technique that works really well is asking my oldest child to remind me. Other than the teenager eye-rolls, she is very helpful and often quite subtle in her nudges, but she has her own life so this only works in some contexts. Plus it's a big responsibility, even though I make it clear that this is MY issue, not hers. Clients have learned to call or email to remind me before appointments and deadlines, and mostly take it in their stride; the ones who could not cope with the idea of brain injury left for greener pastures as soon as they knew that there was something wrong. So I guess the bottom line is to ask others to help. It's in their own interests, and they can potentially turn it into therapy by giving you hints to try to help you remember (my wife does this).
  8. Just seen this now (only joined a few days back). If you are strong enough to handle a stroke, you are strong enough for this. I've been through my sister's numerous divorces (3 of them; she had bad taste in men) and several friends'. In the end, it is better to lance the boil and move on. You may be lonely now, but this will clear the way for better, stronger relationships. And while we may not be there in person, you have a huge support base right here. Reach out for help or comfort when you need it, that's what this 'life' thing is all about
  9. "I've trained for marathon (and ran a couple) when I was MUCH younger so I think I can do it." The "much younger" part is irrelevant. If you've run marathons, you know what it feels like to bonk around the 30-35k mark, and you know that you are able keep going past that, because you have done it. Just keep that in mind and think of this as yet another marathon; one that you haven't trained for but the same sort of process. Youth has speed, age has endurance, and endurance is what you need now. Then keep putting one metaphorical foot in front of another, and remember that at some point you will hit a point where you'll feel better, notice an improvement, and build up energy for the next leg. If you still have the finisher's medals or finish-line photos, keep them somewhere prominent as a reminder. My wife brought a couple of my medals to hospital when things were getting very rough (before they found the dissection and the brain damage, and I was just getting worse and worse) to keep both of us going. Those little pieces of bronze made quite a difference -- if I could survive that, I can survive this somehow. Eventually things will stabilize and start to improve. It'll take time, but this is a marathon after all, not a sprint. One foot in front of another, and you'll get there in the end.
  10. Hi Ishack Had a stroke before you, but a newbie on this website. I'm an elec. eng., turned computer geek, used to lecture in my very dim and distant past (way back with the 8008 was the epitome of integration). Things go in fits and starts. From what I can remember of the early days, the two weeks that I spent in hospital were mind-numbing, but I felt as though things were getting back together. Then I went home, and spent two weeks feeling as though there was nothing inside my head. Then I spent three months in rehab and felt on top of the world because I was doing so well. Then I tried to live a (semi-) normal life, and felt like something that the cat had dragged inside. Then I started figuring out what worked and what did not, and kind of kept on going as I adjusted to the new reality. Your mileage will most definitely vary. Two things to keep in mind: things _will_ change, sometimes dramatically and sometimes quickly and sometime in quite subtle ways; the overall trend will be positive, even if you don't see it from minute to minute. Give yourself time. As an engineer/computer geek, you might relate to a book that helped me a lot: "The Ghost In My Brain" by Clark Elliot. He's a professor of AI who suffered a major concussion, and describes what he went through using AI and computer processes as analogies. In my case, it helped me to recognize overload before it hit, and helped me to deal with overload. It also helped me to understand that recovery is not something that you measure in days or weeks or months, but that things will trend asymptotically upwards.
  11. Hi Alan Give yourself time and space to recover. You'll probably have some setbacks along the way, but these will be temporary. Expect them, and try not to get upset, just wait for things else to catch up. My two cents is to get whatever aerobic exercise you can (in moderation) and get enough sleep. I slept about 12 hours/day for the first few months (usually not all in one stretch). Even now, if I stay up later than usual or get up early, I have all sorts of weirdness -- I have difficulty walking, I am incoherent, and so on. Things improve over time, and keep improving. There is a lot of support out there, and most people want to help, so let them know about the problem and tell them what they can do to help. And don't beat yourself up if you do get upset or downhearted; it's all perfectly normal and feelings like this need to come out. It really does suck at times. Just keep going minute to minute, hour to hour and day to day. paul
  12. One of the results of my stroke is an upper-right quadrantanopia (ie: no vision in the upper right quarter of my visual field). This affects both eyes (it's in the visual cortex, AFAIK). I have regular visual field checks (Esterman and Goldmann) to keep my driver's license (I'm on the vision waiver program; my vision is outside the limits that they require but I can compensate well enough to drive safely). If the early post-stroke days, we were looking long and hard for anything to speed up neuroplasticity and magically fix everything. We ended up finding Neurovision, which is an FDA-approved visual field rehab program. It uses a computer program that have a fixation point to stare at, then flashes up blobs of light of varying size and brightness around the edge of the field cut (both on the visible side and the blind area). The idea is that over time the brain can start to track objects the straddle the cut and then objects just inside. The measure response (you click the mouse when you see light, much like Esterman) and tune the program accordingly, adjusting size, brightness, location and duration of the blobs. Regular reports show progress. The reports do indeed show progress, slow and small but noticeable. Of course, the stimuli change over time (brightness and size), so the results are probably not all that meaningful. I did feel that there was some real progress being made, and that this was worth the two or three hours each day. At the end of the program, I was convinced that things had improved Then I went for my annual Esterman/Goldmann (for the MTO to approve my annual driver's license renewal), and found that the results were identical to the year before. So there you go. I guess that it gave me a feeling of doing something positive and constructive, but ultimately it turned out to be snake oil. Maybe it works better for other people? If you are thinking of this, caveat emptor. Think carefully about the investment of both time and money, and whether you can afford to throw them away if it doesn't work for you.
  13. Just discovered that you are both from the Atlantic. I was nearby not that long ago; the entire family (wife and I, plus 4 children) were in Newfoundland for two weeks at the start of the summer. We must have driven past Benni's house (landed in Deer Lake, spent our first night in Little Rapids). I've not been to PEI yet, though, but that's on my list. There is something about people who live on the Atlantic -- I spent my formative years (and met my wife) near Cape Town. Not as extreme as the Canadian Atlantic, but rocky and cold and stormy and beautiful. And the nicest people. And when the weather is good, it is perfect (which is what we got :-)) I've been trying to persuade my better half that we should retire there; she's still holding out but is weakening after out trip.
  14. Toronto, near Bathurst/401. Immigrated from South Africa 13 years ago, second-best decision of my life. Best was getting married. Wonderful country, amazing people.
  15. Hi Benni and Linnie Thanks for the welcome. Having lurked on this board for a while (reading posts non-stop), it is a great place. I feel quite humbled reading through the support forum. I'm very aware of just how lightly I got off, and how much so many people have to deal with. That was my big take-away from three months in rehab watching people learn how to walk, how to pick up a pencil, how to drink unaided from a spill-proof cup, how to stand without falling over. I keep reminding myself that things could have been so much worse. The vision problem is due to damage in my visual cortex and so affects both eyes. It is unlikely ever to improve. I tried using Neurovision, which supposedly helps improve vision around the edge of a visual field cut, but after 12 months of 2 hours/day, there was no change at all. I have gone through the vision waiver program, and was able to get my driver's license back, so I can compensate pretty well. I have to get visual field checks every year to keep my license, and a road test every couple of years, but that's a minor hardship. Memory seems to have improved slightly over the past year, but the Cog-Psych evaluations show no actual change. I'm just better better at managing it (subtle prompts for reminders, trying to pick up clues from conversation, taking notes, using smartphone reminders). I am not expecting any real improvement. I can fool most people, but I used to have a phenomenal memory (I can still remember my childhood toys from 55 years ago) and I am aware of the changes (cannot find anything in the kitchen without going through every cupboard; I have done all the cooking in our household for the past 30 years) I'm an engineer and my wife is a veterinarian, so we both like hard information, so lots and lots of testing over the past 18 months. I'm mostly getting better at managing the deficits, which takes a certain emotional and cognitive toll. My wife can spot workarounds a mile off, and hates them; she'd rather face the problems head-on than use work-arounds. I try to patch things up and paper over the cracks when I can. Overall, I am really lucky; it could have been so much worse. I hope that I can offer others some meaningful help and support over time. I owe gratitude to some many, which I cannot repay directly; helping others is a way of passing that support on.