PaulNash

Stroke Survivor - male
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Everything posted by PaulNash

  1. One of our kids came over for supper last night. Rapid-test negative before she arrived, lots of windows open. She tested positive this morning, so we tested ourselves. Wife and I both positive, two adult children visiting are still asleep, but I expect that they will also be positive. We were planning to go Banff next week to meet one of the kids who now lives in Vancouver; that is now off. Sigh. Asymptomatic apart from a very mild headache. Could be a while lot worse; thank goodness for vaccines and Ontario's aggressive (if belated) rollout. paul
  2. I've had three shots so far. My only side-effects were sleeping for about 24 hours after each shot (a blessing for me; I've had difficulty sleeping for several years now) and a sore arm for several days. While the protection isn't perfect, I am *REALY* glad that I got them. I may be eligible for a 4th in the next few months, which I will grab with both hands. One of my adult children just tested positive; she's also triple-vaxxed. Has mild cold symptoms, only significant impact on her is that she can't go out to the shops, and has to use DoorDash to get groceries. All the medics that I know (wife, sister-in-law, family doc, neurologist ...) agree that the benefits FAR outweigh the risks and discomfort. I'm not a doctor, but my medical friends tell me that the risk of clots is negligible., especially when you look at the risk of getting severe COVID. I'm on aspirin anyway, so in my case clots are moot.
  3. My sleep was all over the place, but I managed to tame it to a fair extent. I'm lucky because my legs work well most of the time, so I can run, which helps with both sleep and sanity. I can't run very far or fast any more, but even a slow-ish jog around the block helps enormously. It also helps mood, which is vital for me; as I would have walked under a bus long ago without it. In winter I use our (very second-hand) dreadmill, or do pullups or almost anything that will get my heart-rate up. Even just walking our dog around the block helps me get a bit of perspective on life, and helps my sleep. As with all these things, your mileage may vary.
  4. I guess that there is no one answer; I change opinion regularly. I go through periods where I would happily kill myself, were it not for the impact on my family. And other spells where I think that life is just fine, even if not as good as before. COVID lockdowns (both self-imposed and mandatory) have only made things more volatile. Family and friends keep me going.
  5. Must have been horribly scary; glad that it was a false alarm.
  6. Thank you all for the comforting words and good advice. I've been putting my head down and focussing on work to keep the wolf from our door (depressing; it makes me more and more aware of cognitive issues and stamina). Linda and I have a kind of modus operandi which sort-of works. During working days I generally keep to my office, and bash my head (mostly figuratively) against work problems. Evenings can be mixed depending on what happened in each of our days. Because of vaccines, I'm spending more time out of the hours, which also helps to reduce friction. I'm also letting things happen to a greater and greater extent. I have to get visual fields done in a hurry to keep my driving license (I'm partialy blind). In previous years I would stress like anything to get them done and while waiting for the official verdict; now I'm feeiing more fatalistic and calmer. Some of this is getting used to post-stroke me (several years, and I'm still not there), some is giving up. Logically, I know that I am exceptionally lucky. My stroke could have been FAR worse. Our marriage could have fallen apart. I could have been unable to work. And so on. I get good support from my neurologist, and have a Zoom call with the hospital's shrink from time to time. I dislike myself for whining, and giving up, and not doing more for the people I love. But looking at younger friends with no cognitive issues going through similar problems, I guess that COVID just sucks. Thank you all, stay safe. My medical friends tell me that the worst is over and we'll be back to semi-normal "soon". paul
  7. Thaks Becky. When I am busy doing stuff and feel that I am contributing in some way, things aren't too bad. As far as I can tell, the biggest problem is my relationship with Linda, which I hope will improve when she gets to go back to work at the Humane Society, rather than working at home, and sees other people IRL instead of over zoom calls. Right now I'm trying to exercise as regularly as I can (given the weather, snow and ice), which helps my mood and my resilience. Other than that, it's one day at a time. Sometimes one minute at a time. I used to run ultra-marathons when I was much younger. That taught me some very good lessons about endurance, which are half-forgotten. I am re-learning them. Taking the race one step at a time; taking life one minute at a time. Focussing on the finish line, not on the pain right now. Of course, it is more complicated that than, because there is another person involved, but it helps. Except for when it does not :-(. Heather, I haven't been able to listen to Dr Harrington yet, but have scheduled time for it this morning. After surviving three years of Linda's PhD at the ANU, we should be able to survive anything. (hint: if you are driving between Melbourne and Sidney, and see the Canberra turn-off, put your foot down and keep going straight. Canberra is carefully planned, full of bureaucrats and absolutely soulless. Avoid at all costs)
  8. Heather and Janelle Thanks for the kind words and useful advice. Just reading the Stroke Board is a huge comfort, knowing that I am not alone and not malingering. It's also a huge relief being able to talk to people who are going through the same things themselves. And there are occasional eureka! moments, that help me try to change the way that I think or act. Part of my memory issue is that things are erratic. I have anterograde amnesia, so I can remember all sorts of details of trivial things that happened in my childhood, or 6 years ago, but not remember why we had a huge fight 15 minutes ago. Which frustrates us both. I have a spreadsheet that I use to track things that I need to do. Biggest problem is making sure that things get on it, and remembering what I have to do between reading the spreadsheet and actually doing the task. Depending on tiredness, phase of the moon, the actual task details, etc, I can remember for anything from 30 seconds to 3 days. I'm trying to write details and steps for the task at hand and carry that list with me. Just slow going turning that into a habit. Exercise helps a lot. Mood, if nothing else. Now that things are warming up, I'm starting to run again. I used to be a fairly serious long-distance runner, can't run very far any more, but can still work up a sweat and work off some frustrations. Lockdown also makes us both a bit depressed and ratty, and does not help our finances (my work has dropped off quite dramatically this year). And the financial pressures don't help the tensions and mood. I went through a spell of feeling that a tragic car crash would solve problems (insurance money, no anything for me, no frustration for Linda), but figured out pretty quickly that it would just make things worse. So at least I have left that behind me. And, or course, everything is far, far worse when I am tired. So I am trying to make sure that I get several rest periods a day, whether I think that I need them or not. Thanks again for the wise and comforting works. They mean a lot,
  9. I have been offline, just reconnected and saw this now. This space that Steve created has played an enormous part in keeping me sane and alive. I owe him (and everyone else on this site) a debt that I can never repay.
  10. I think that I am losing it In a big way. Last week I had a major blowup and my long-suffering wife. I accused her of gaslighting me; thinking that she was telling me that I was failing in all areas, that she was accusing me of not supporting her while we were in lockdown, and on and on. Then I stormed off and went to go to sleep in one of the kids' bedrooms (this child left home a year ago, but we keep her bed made up just in case). Linda came and dragged me up to our bed. Next morning (and evert morning thereafter), I was contrite, not sure what had come over me, and she has been in serious distress. My memory seems to be getting more and more erratic at the same time, and I have been getting more are more depressed. My memory issues make it difficult for me to remember all the details, and also to behave consistently. I feel detached quite a lot of the time, aware that I ought to say something contrite or reassuring or sympathetic, but unable to think of the words to use. I'm also having difficulty figuring out the sequence of things that I have to follow to get specific task done. We are starting to do some home renovations, both as a form of therapy (which may or may not work), and to try to shorten the backlog on our home-maintenance list. Because of COVID, I can't go and see my psychiatrist (who will be useless anyway, and will tell me to write a "thought record" about what I was thinking even though I have major memory issues). I'm not sure how much my neurologist would be able to help. FWIW, I have had fairly flat affect ever since the stroke, and now find it hard to express my emotions. Since my stroke, I have often been tempted to walk in front of a train, but I could never do that to Linda and the kids. Realistically, things have been OK on a day-to-day operational level, but the emotional bond is frayed and feels like it is hanging by a tread at the moment. If anyone has any thoughts or ideas, I'd love to hear them. I don't really expect to find a silver bullet, but a bandaid could help. I guess that I have finally come to grips with the fact that I am broken in significant wats, and that cannot fix everything (anything) by myself. And that Linda is as drained and as weary of this whole thong as I am, maybe more. Paul
  11. Wow! That is a really impressive set of achievements! I never knew that I was in such exalted company.
  12. Wow; Gbale that is really shocking. That has to be super-tough to cope with. You are a remarkable person to be able to deal with that. Keep fighting!
  13. Good luck! I hope that his is one of those huge leaps forward. Let us know how it goes (the clinic) and please please please keep us updated after the procedure, so that we can follow your progress. Holding thumbs that this returns you to a pre-stroke state!
  14. Still here, still alive. Been seriously busy (DIY home reno, gardening, work. Also pretty depressed (domestic issues exacerbated by COVID restrictions). Keeping going, day to day.
  15. Will2, I could not have put it better. This site is a sanity- and life-saver
  16. If you are interested in wildlife, there are fixed tents like that at various Southern African reserves that I have stayed at. If you are interested and can cope with long-distance travel, Etosha Pan (Namibia) has 5-star arrangements, I have seen some in Zimbabwe (especially on the Zambezi river), but their current state is unknown. And the most amazing of the lot was in Zambia -- basic accomodation (2- or 3-star rather than 5-star in Etosha), but the animals wander around really close to the site in the evenings, looking for unwary tourists And Kruger Park in South Africa has 5-star+ accommodation, guided nighttime tours; the whole catastrophe. And if you are paying in US$, it is frighteningly cheap, even with the "foreign tourist" surcharges.
  17. My father died quickly and peacefully. I think about him and all the good parts of his life on both anniversaries. My children are tired of hearing the same old stories over and over, so I tell them to myself instead. My mother died slowly, with Parkinson's. My major thought on her anniversaries is gratitude that she eventually died, and that her death was painless. Then I think about her life, which was complicated, and how she managed to deal with it. I get more and more sympathetic and impressed each passing year.
  18. Wow. I have just been to my family doc who thinks that I have gout in one toe. Sounds like is is as actually spasticity. That toe scrunches up, muscles tight as can be, and gets really painful after a while. Only relief so far is if I straighten it manually (push down with the other foot while sitting). Onset was around a time when my other leg (the effected one) started to behave significantly better. I'll bring this up with my neurologist at my next consult, and see whether he has any ideas. Family doc wanted to put pin down the length of the toe to hold it straight, which stretch me as pretty brutal!
  19. Thanks you Kelli I want on two CBT courses post-stroke, which helped for a while, but with my memory issues I kept forgetting to use it, or if I remembered I forgot how to do it, and would generally end up feeling worse. This is great -- I have printed it & stuck it to the wall in my "quiet space", so that I can run through the steps easily when I am feeling overwhelmed, depressed or angry.
  20. Crossing everything that I have two of, and hoping and praying that this is a permanent change. You are a real inspiration.
  21. Hi Janaailene I'm not the feel-good type; here is what I've gone through. Your mileage will almost definitely very, but there is hope. I've never had a panic attack (as far as I can remember). I had two strokes two days apart as a result of a vertebral artery dissection in 2016. Nothing after that. I am allegedly at a higher risk of another stroke "because". My neurologist can't explain exactly why, it's more of a risk/statistical thing. Plus the dissection is still there, but the artery is now completely blocked. The first two years saw a bunch of improvements, big ones at first (walking, balance), getting more and more subtle as time goes on. I'm still partly blind but I am better at compensating. My left leg still gives me trouble, but only when I am tired or run longish distances (but at least I can run again!). My short-term and working memory is still a disaster, but I have workarounds (notebooks, computer, and more). The first few years my family and I were all horribly worried about further strokes (or bleeding to death because of anti-coagulants). We've worked out a modus vivendi over the years, and it works most of the time. I am still anxious, frustrated, angry, depressed and despairing from time to time, but it gets easier to deal with. Wife and kids are used to this, so don't generally freak out. Not every day is good, but there are streaks when I feel almost normal again. I have found it easiest to deal with when we are all brutally honest about about the impact and prognosis. Our children (now young adults) have adapted easily, and help in multiple ways in a very natural manner. One of the positive side-effects: they are compassionate and have a huge amount of empathy when dealing with people. This is early days. Over time things get easier to deal with and sort-of settle into the background. Just think of the impact of having a child; life goes from stable to crisis to complicated to a new normal. I hope that this helps. paul
  22. I've also gone from being primary (often only) bread-winner to also-ran. I finally earn as much as Linda does now (if you include the disability payments), which is something that we are both still coming to grips with. I'm also getting used to her asking a colleague when she has computer problems, rather than asking me. Mick Jagger: "Time is on my side". That's the one thing that has consistently helped mood and function.
  23. My heart goes out to you. I am hoping and praying that he improves quickly and you are able to take him home soon.
  24. Wow! That is a whole lot on your plate. I really feel for you. And yes, it's not fair. None of this is. Unfortunately, there's nothing much that any of us can do about the event itself. Just how we react to it and to the deficits and emotions that come in its wake. You have already taken the first step (or maybe it's the second, or third, or ...) by signing up for counselling. And one more step by coming here and asking. I'm also all over the place sometimes, but for me things have got easier over time. There are still very very bad moments, but I have found that they are just that, moments. I find controlled breathing a great tool when I am feeling stressed. I breathe out as far as I can, wait a few seconds, then breathe in as far as I can fairly slowly. Wait a few seconds. Breathe out slowly as far as I can. I keep on repeating that for as long as it takes to calm me down. When I first started, I had to concentrate really hard not to take short quick breaths, now it is much much easier. It works really well for me, though your mileage may vary. Probably the most important thing for me is exercise. I used to run quite seriously, can still run but neither far nor fast, but I do try to get in a run at least every second day. Initially, I would run for 5 steps, walk for 10, run for 5, and aim to run two lengths of a city block (out and back again). Not far or fast, but it helped mood and general stamina. I try to walk as much as possible, rather than driving or taking transit. We have a dog, and one of my duties is to walk her two or three times a day, which gets me out into the fresh air. When my leg starts misbehaving, I just go for as long a walk as I can manage. I was on anti-depressants for a couple of months, and I think that they helped, even with horrible side-effects. I saw a psychiatrist during that time time, but got little if anything out of those sessions. I dropped psychiatrist and anti-depressants as soon as I could, and keep them as a kind of threat to myself: "if I can't work out how to cope, I'll have to start that again" is a great incentive to work out how to cope! Another big thing is to talk to people. Talk to us, on this board. Talk to friends and family, by phone of in person. Persuade them to come and visit, if at all possible. Chat to the neighbours, say hello to random people if you go out for a walk. I'm sure that not all of these will fit or will work, and maybe none will. In my experience, though, the act of starting to do something has a huge positive impact. "At the moment one definitely commits oneself, then Providence moves too" -- William Hutchison Murray "Whatever you can do, or dream you can, begin in. Boldness has genius, power and magic in it" -- Goethe
  25. I'm all over the place. One of the joys of memory impairment is that some of the time I forget about COVID-19, and things feel normal (well, as normal as they have been since my stroke). My generalized anxiety has gone sky-high. I often feel gloom and despair about the present and the future; keep wondering what is going to happen to family, friends and the population generally before the is an effective vaccine. My youngest is due to go back to school soon, and I am scared witless about what might happen, both to him and to the rest of the family. And of course there is still the usual depression when I run into the brick wall of the brain damage, which seems to be happening regularly. I'd love to be positive, but ...