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Stroke Survivor - female
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About heathber
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    Chief Mentor
  • Birthday 05/23/1965
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  1. heathber

    yep reality is its none of their beeswax. and if I'm happy why does it matter to anyone else. It isn't what I wanted from my life, I was lucky to know that at the age I did. (If I'd said at 18 I want to be a doctor no one would have questioned me, but when I said no kids the answer was always "you'll change your mind in a few years".) Now my elder niece is the one getting it. Just because she and her partner have been together nearly 10 years and have bought a house together doesn't mean they are going to get married or have children. So long as the choice is right for both of them no one else has any right to comment.
  2. heathber

    Hi Mike the way I think of it is your brain is now a battery that has been fully discharged one too many times. It takes a lot longer to recharge and does not hold a charge well anymore. It also tends to run out with a "bang". With constant trickle charging and being careful not to fully deplete it again it will eventually improve, but this takes time. Learning to manage your energy and saving it for the stuff that matters is the key.
  3. Hi I also have no idea of the stats, they can't even tell those of us who've already had the full catastrophe how likely it will be that we have another. other than to tell us our risk of a stroke is higher than other people who haven't had one yet, but are otherwise equivalent. So get out there and live your best full life while you can and appreciate every part of it. Remember it's the things we didn't do that we regret, when we look back at our lives. And yes the whole process is fascinating, I too continue to be amazed rather than scared. I think that's the best way to deal with it. Also be stubborn in the best way.
  4. Now that's a tough pill to not swallow. Hopefully they can try something like Pam has been on where they physically change the nerve impulses. RFA, electrode intervention etc. There's also the harder fixes where you need to retrain the brain to understand the signals it's receiving rather than just linking everything to "pain". These take a lot longer and are extremely difficult when you have to unlearn the current responses as part of it.
  5. heathber

    yes if you aren't feeling confident at managing it yourself find someone to help after all you don't want to lose the option because to apply you need to be able to "work" and the whole point is you can't work. If your friend can't do it look for an advocate rather than a lawyer. you can't be the only one in your situation.
  6. Sounds like a good idea! let us know how it goes.
  7. heathber

    That is wonderful news Mike. An employer who's willing to work with you makes a huge difference to your long term outcome. But do watch yourself and don't try to do more than you can/should. Tempting as it is, jumping back in all guns blazing could set you back in your recovery. So the words I hate to hear I'm passing on to you here "Make haste slowly, please". Stroke fatigue has a nasty habit of sneaking up on you and accumulating over a number of days. And the more accumulated fatigue you have the more your deficits will appear and impact both you and your work. Listen to your body and rest when and where you need to. You CAN do this but you also don't want to screw it up.
  8. heathber

    Oh Pam, just what you don't need but you will get through this hurdle too So hard to find a partial solution and then to have to go back to waiting and with a new worry on top of it. HUGS
  9. Hi Tarina a night splint is pretty standard equipment. I hate mine and go through periods of not using it. During the day make sure you are using the hand as much as you can and stretching the muscles/tendons and mobilising all the joints through full range of movement. what you use as a splint depends on how much movement you have. a glove or mitten with a soft ball in the palm may be all you need. Another option to try is a rolled up flannel. A splint does not hold the fingers at full extension it just needs to prevent the finger tips from touching the palm. Also make sure you keep the fingernails very short. Benni was using an archery finger splint at one point she posted pictures of it here somewhere.
  10. heathber

    That's the way its done Tarina! If people stare etc. its their problem not yours. If it works and you can go out feeling safe it's worth it.
  11. heathber

    Oh yes that big scary word DISABLED. None of us want to accept that definition of ourselves. but it's only a word not who you are. And by using that word you can access the things you need in order to survive. Just remember that word does not change who you are but does make a lot of things a lot easier to manage. This thing comes with so many disadvantages don't cut yourself off from it's few advantages. And don't minimise your deficits when applying for help. They want us to deny our realities so they can say no to giving us help. As my grandfather used to say " there has to be some advantage to being a blind old age pensioner". You never saw a man less disabled by a body that was failing on him! and he was over 90 when he said this.
  12. heathber

    Hi Tarina, exactly! I never married although I did spend too many years in an unhealthy relationship to be in any hurry to repeat that exercise. I 'm happily single and have/had been for years both pre and post stroke. You get used to everyone thinking your crazy when you say at age 18 that you aren't going to have children and then you don't change your mind, at least now I'm over 50 people have stopped asking the kids question.
  13. heathber

    Hi Mike, yes this is tough and recognising it for what it is (fully life changing) is a good start. There's nothing wrong with losing it and having a day on the couch if that's what you need. Just don't let it become every day. If you want to try the medication route rather than battling through there's no harm in that either. you need to find the path that works for you. And there no shame in recognising that you need help and asking for it. While moving "home" is probably a good idea it will also take some serious effort and organising so I would delay that for now. Feeling isolated is one of those common threads in stroke recovery, it's one reason this community is as strong as it is. Hang in there, you CAN do this -Heather
  14. Go for it Tarina slippers in the bed with you sounds super sensible. and I like the sound of your cards too. The more you reinforce the message the better it will stick.
  15. heathber

    https://www.healthline.com/health/anticoagulant-and-antiplatelet-drugs Hmm so Asprin stops the clots from forming while the anticoagulant drugs unbind the proteins to reduce the size of clots. But there are still 7 other anticoagulants on the list on that site. I would think that all of them will have a risk of bleeding, that is the definition of what an anticoagulant does. and the reality is that the newer ones are going to be more expensive than the older ones. One approach you might want to discuss with your doctor is take the anticoagulent for 6 months or so (assuming you can get free samples for that long) to remove/reduce any existing clots then switch to antiplatalet to reduce likelihood of new clots.