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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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  • Stroke Anniversary (first stroke)
  • Stroke Anniversary (second stroke)
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  1. Hi Deigh Port Elizabeth, actually, about 600km South of Durban. Beautiful weather (not as hot and muggy as Durban), windy and great waves for surfing. I lived in Australia for three years, but never made it to NZ. My closest friend in Aussie was a New Zealander, and my wife and one of my kids travelled there (many years after we were back in SA) for the Kids Lit Quiz world finals (the first year that Canada fielded a team, and they won!). I'd love to go there, but time is short and getting shorter. I was in SA for the World Cup finals between the Kiwis and the Springboks, when James Small effectively nobbled Jonah Lomu. That game turned into an independence celebration, bringing black and white together in an amazing way.
  2. Wow! I thought that I'd had pain and discomfort before, but nothing like that. You are a superhero! Superheroine, I guess. And you are my hero for surviving that. Thanks for sharing; this helps me to understand that I can also cope with my far more minor travails. I hope and pray that things are much better. paul
  3. My wife has epilepsy. I have the stroke. She had a couple of seizures when we were dating and early in our marriage, then they finally got the meds sorted and maybe something changed in her brain chemistry. Whatever the reason, seizure-free (but still on the meds) for about 25 years. She still take the meds, though, just in case, but a very low dose. Things neurological change with time.
  4. I moved to Canada from South Africa nearly 15 years ago. Still miss the relatively balmy winters of my home-town on the East Coast. Mid-winter meant wearing a sweater in the morningsand playing rugby instead of cricket. Then I moved to Cape Town. Winter meant getting blown over by South-East gale-force winds while walking down the road. Or being flooded if you lived on the wrong side of the mountain. We moved to Pretoria, where winer meant frost in the morning and dead plants because of no rainfall, but was bright and sunny and gorgeous. Summer brought torrential rain in the late afternoon. Now I live in Toronto. Summer tends to be hot and humid, winter tends to be cold and icy. Or so I thought until we went to Newfoundland in midsummer, and found small icebergs stranded near our airbnb. Now I understand why the locals call Toronto "Miami of the North". However, the medical system works really well and the country is peaceful and law-abiding, so weather is a minor inconvenience.
  5. Yes it sucks and is frustrating and drains energy. And there is no easy fix. I have an upper right quadrant anopia (1/4 of my vision is missing). This is because of a lesion in a part of my visual cortex, where the two optic nerves join to form a 3D image. The rest of my vision is apparently normal, but I still get fatigued if I do anything visually intensive (like spending all day looking at a computer screen -- I'm a network engineer, so this is a significant part of my working day). I have gotten used to taking frequent breaks, stopping and closing my eyes to give the visual cortex a break. Every so often I get up and walk around outside, to get natural light and to focus on stuff far away. It took some time to build the habit, and it annoys some of my clients when I take breaks, but it's the only way that I can keep going. Even so, if I'm working on anything that is cognitively intensive, I have to stop and shut off completely at regular intervals. Put my head down on my desk, find a comfy chair, go and sit in my car, take a walk, whatever ... I signed up for a system that exercised the visual fields and was supposed to improve the field cut (nova-vision?). Their in-system testing showed improvements, but a real Esteman test showed no improvement whatsoever. Can you say "snake oil"? I knew you could :-) I also have significant memory deficits. Notebooks and pens help, and I have recently switched to a system called "neo notes". Pen has a small camera next to the nib, paper has invisible markings, so the pen can track and record pen-strokes. It then syncs over bluetooth so that you have a records of the page _as_you_wrote_it_ (like watching a movie of the page being written). Not perfect (I still have to remember to look at the notes), but big improvement over my mountain of old notebooks. Try to adapt rather than fight. Plan trips to museums or galleries to give yourself breaks every so often when you can sit down and shut your eyes and rest for 5 minutes. Eat frequently. Stop and rest during normal activities. Monitor your energy levels and stop when they are getting low. The eye misalignment can apparently be fixed by fitting prisms to your glasses lenses (or getting glasses with prisms if you don't usually wear them). These can move the images to align them. You need to find someone who specialises in neuro-optometry to help you with this. I hope that this helps. You are not alone in this, and there are ways that you can adapt your day to make it easier to cope. And this is not a weakness or moral failure on your part, and more than having difficulty running after having one leg amputated would be a weakness or moral failure.
  6. My heart goes out to you. Grief is not contagious, and if venting helps, do it. You listen to others' pain here and help them, we can listen to yours and try to help you. I wept reading this. Life really is unfair; if I could take some of your burden, I would do it in a heartbeat. So would others. We love you. Believe this.
  7. Good news that you have a neurologist who will take the time with you. It makes all the difference. The other good news is that things *do* improve, especially in the first year or thereabouts, but the improvement keeps on for years after. It gets less and less noticeable, but it is still there. Just remember, this is a marathon, not a sprint.
  8. This made me cry. You have given him a most amazing legacy.
  9. Wow! That is such a great insight. I have something similar, with vey minor cognitive overload causing my thoughts to fall apart totally. I'll watch out for that, but I think that you have nit the nail on the head. Thank you.
  10. I used to suffer from chronic allergic sinusitis as a kid. My mother's treatment took some getting used to, but worked wonders: Mix a medium-size down full of blood-temperature water with a couple of tablespoons full of table salt (amount of salt needed varies with size of bowl). Submerge your face in the bowl and sniff. Let the slat water come up your nose and into your mouth. Take your head out of the bowl, spit out the salt water. Repeat several time per session, several sessions per day as needed. It sounds really gross, and the first sniff is really difficult to do (survival instincts kicking in), but it is not unpleasant and it really works. This was the only thing that let me breathe through my nose in the spring. I still do it as an adult whenever I have a bad cold or flu and am feeling bunged up. It's a lot easier to snort saltwater now (practice :-)), and it really helps.
  11. If they have not done a any decent imaging, they have no idea how much and what damage was done. In may case, it took about 12 cat scans/MRIs/contrast MRIs over 4 days to find the vertebral dissection and from there find the lesions. One of the joys of Canadian socialized health-care; there was never a question of whether or not to do the extra scans, they thought it necessary to find the root, so they did whatever was needed. If necessary, make a scene to get them to do a decent examination. Jump up and down, scream and shout if necessary.
  12. I am not a doctor, psychologist, psychiatrist orang other sort of medical expert. I can only speak from my own experience. I'm going through some of this from the other side, but nowhere near as severe. From what I have seen on my stroke journey, the most important thing is to look after yourself. Take time to run again. Long/fast runs (especially running to complete exhaustion) are like shampoo for the brain, helps to clear out the crud. Focus on your family, they also need your help. I am not a neurologist, but in my case, time has made a huge difference. It's 2 1/2 years since my stroke, and I feel human again fr the first time. I still have a flat affect, but I am getting better at reading cues and trying to face appropriate responses. Hang in there and look after yourself and your family. Good luck and let us know how things progress.
  13. Since my stroke, I have had enormous difficulty showing what I am feeling. I know that my wife gets enormously frustrated with this, and I am trying to learn how to "spontaneously" show my emotions. It is not easy for either of us -- she sees a flat affect, and thinks that I am not listening or do not care, I feel like I have to learn how to be an actor and act out the emotions that I feel, as otherwise they are invisible. I don't know what the answer is. Even talking doesn't always help -- at one point I started pushing my family away from me, thinking that they would be better off without me. Those feeling have changed, but it has taken time. Showing how I feel is a work in progress, but at least we talk about it now. Hang in there, talk and try coaching him in appropriate responses. It sounds stupid, but it really helped me to be asked "what do you feel about this? what does an appropriate response look/sound like?". It takes some time to re-learn social cues, and (in my case) a lot of repetition to remember them. It must be really hard to be on that side of the wall that stroke can erect. I hope that you two can work things out and that it improves.
  14. I've also been there. Many bouts of depression before my stroke, some very severe depression at times post-stroke. Found that anti-depressants had very very weird side-effects post stroke (like making me itch all over). The depression improved over time. The most helpful intervention was a mindfulness meditation course that I went on, which did not "fix" any of the problems but helped me to accept them (most of the time). There were many times when I thought that it would have been far better for everyone if m second stroke had been fatal. Just seeing the misery on friends and families' faces (and attending a bunch of non-stroke-related funerals of friends' parents/siblings/children in the last couple of years) has put me right off that one. I still think about death occasionally, but mostly thinking how glad I am that I am alive, for the sake of others if not always for my sake. This journey can be a real struggle at times, no doubt about that, but it is worth battling on through the tough bits, it makes the good parts that much sweeter. I hope that you find a way of dealing with this that works for you. We're on your side, and we're rooting for you.
  15. I'm with you Tracy. Things improved for a while, not starting to slip. And the depression and anxiety creep in and make it worse.