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Stroke Survivor - female
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Everything posted by heathber

  1. heathber

    It has to happen, scared is fine. Do your advance care plan before hand (just in case) then trust your plan and hope it isn't needed. You've got this. (((hugs)))
  2. The best advice I can give at this point is sleep and rest! Don't try to overdo it. You would not go for a run with a broken leg. Right now your brain is injured and will take several months just for the physical healing. When your concentration is shot your brain is trying to tell you something, learn to listen to it. Your brain gets it best recovery when it doesn't need to do anything other than the minimum required to keep the body going so sleep when you can. Yes you need to push limits sometimes but be realistic too. There is a time and a place for "Stubborn" Heather
  3. heathber

    I'm in the celebrate it camp, too. 15 years is an achievement for both of you. It might not be a happy memory or a good moment in your lives but it was a major change and you both got through it and it should be marked in some way. Why not have a party so long as it's not too much for either of you. Can you ask a friend or family member to do the "work" of it?
  4. Hi Jim, nice to meet you although I would rather this wasn't happening to you. But you can't undo so you move forward. Yes the first few months are full of questions and the emotional roller coaster can be overwhelming. Congratulations on reaching out for help. Unfortunately this is a marathon you've just embarked on with no preparation so it will be tough sometimes. Don't beat yourself up, ask all the questions you need/want and if you just want to get on here and scream occasionally know that we've all been there and "get it" and will offer advice to the point where you wish we would all just shut up. But that's the joy of forums like this you can ignore us any time you want to and we'll still be here when you need us. -Heather
  5. heathber

    That sounds like a great idea Deigh. I have yet to find an effective and nice way to discourage the "mothers" of this world. Although sometimes explaining that it helps to at least try to do it yourself first can help them get the idea.
  6. heathber

    Hi Scott. you are not quite six months into this journey. And a journey it is. Frustration and even despair are the hallmarks of that first stage. Keep in mind that the physical healing of your brain is only now starting to finish. So now is when you really start rebuilding. "Recovery" up til now has been the "easy" stuff that was probably more affected by inflammation than actual loss of brain function. So yes it feels like you have plateaued (as the insurance likes to say, they don't want to spend any more money on you) but that just means you have reached the point where the easy gains have been made and what you get from here will require much more work and perseverance. Time to engage your inner stubborn b*****. Stubborn is you friend on this journey as are we. Ask any questions you want, we can help with strategies that have worked for us even if we are not medicos. In some ways we know more having lived through this. And yes recovery continues long after the insurance company thinks you should stop. Yes some of it is just learning easier (more efficient) ways of getting things done, but a lot of it is the slow improvement of connection and control. Keep working and repeating to rebuild your strength. that walking thing is tricky but achievable. I too lost my non dominant side completely. I still don't walk fast but I can walk a couple of kms when I need to. I exhausts me but I can do it. The main thing is don't give up, you only know where your limits really are by pushing against them. This doesn't mean take silly risks. If you are going to push a limit asses the risk and have a plan for failure just in case! Other than that go for it. Life is for living get out there and do it! -Heather
  7. yep what he said! you go girl!
  8. I'm not sure how Janelle's topic about people telling you how to grieve and when got sidetracked to euthanasia. But I'm for it, so long as it's the patients decision not the doctor's, and not the family's. Which means either the patient has documented the wish before the event e.g. with something like a "living will", or the patient is in a position to ask for it themselves ( i.e. terminal and "had enough" and capable of saying so.) -Heather
  9. and resisting the temptation to crawl back into bed 🙂 btdt
  10. heathber

    Oh yes, Like cats you can suggest but until it is their idea it won't happen. I hope that you can suggest it to them, so that they can see the use. It is not that they are incapable its about speed of response and ease of mind for everyone. Maybe ask your stepmom what she would have done to get help if you had not been in the house when your dad fell. After all that will soon be the reality. At the moment she can't call for help and stay with him while she calls. The modern alarms can sense when the wearer falls and call help automatically. Who they call is completely programmable, first call could even be her, and the programming is done by the company so you/they don't have to stress about that bit, you just say what you want to happen and provide the phone numbers.
  11. heathber

    Hi Benni, nice to hear from you. Glad you have made the adjustment. For your arm start with your range of motion exercises, you'll probably need to get help to do them. The idea is to move each joint slowly through it's full range of normal movement, fingers, wrist, elbow and shoulder ideally you will be able to consciously relax the muscles so the joints can be moved. It's usually easiest if you are lying down. Step 2 is to visualise the movements and work to help move with the therapist/helper. From that point you start to rebuild connections and muscle strength. Once you have learned to release the elbow/bicep every time you stand up make sure you arm is straight before you start to walk. It will "creep" back up but you need to let it go each time, usually I can just stand still for a few seconds and get it back to a normal position before moving on. Over time your "carrying angle" should reduce as the associations become weaker. Good luck and remember, repeat repeat repeat.
  12. heathber

    Hi Janelle yes the muscles that control your fingers are in your lower arm. The theory of the splint is that it holds the fingers in a fixed position which allows those muscles to relax. A lot of spasticity, and clonus is just a particular form of spacticity where the muscles go into a rapid reflexive clench release cycle, is triggered by associated movement. So my hand and arm gets tight when I use my leg muscles because the signals bleed and overfire from one area of the brain to another. When I can relax the rest of me the arm relaxes, also by stretching and holding a stretch the nerve calms down and the reflex is quieted somewhat, again this is why a splint can help. But when I'm asleep the rest of me is relaxed and I don't need the splint 🙂, hence my doubt about how much it helps. especially as it's hard and digs into other parts of me or stops me wriggling and wakes me up.
  13. heathber

    It all sounds very trying Tracy. It sounds to me like you need to get both your Dad and your stepmom emergency alert pendants that they wear all the time and then they can get help whenever they need and you can feel more comfortable about moving to your own home. https://www.choice.com.au/electronics-and-technology/gadgets/tech-gadgets/buying-guides/personal-alarms Some of these can also double as a very simple mobile phone. I 'm sure they exist where you are. But do remember they are both adults and you can't try and run their lives any more than they should be trying to run yours. 💖
  14. Making a new habit is hard enough without the "joys" of brain injury. Don't beat yourselves up. but do it each time you remember and hopefully that habit will come.
  15. heathber

    out of kilter time zones can suck!
  16. heathber

    fingers crossed he will now use the aids he's supposed to. It is harsh that he had to learn the hard way, but so long as he learns from it and no permanent damage was done! It is so hard to lose control of a body that has always obeyed you (as we stroke people know all too well) The loss of dignity in the middle of the night is tough. I did something very similar when in hospital last year, he only had you and your mum to see the chaos, I had at least 6 nurses and a team of doctors come running. It's funny now but at the time was anything but.
  17. heathber

    Also look into clinical trials in your area. I've done a couple and they usually involve an assessment and a period of therapy, followed by another assessment. If it's a double blind trial and you end up in the traditional therapy group you win. if you end up in the new therapy group you double win.
  18. heathber

    I get you! you can see what's coming and you have done your risk analysis so while you have fear you are not afraid. It's anticipation not dread. All fingers and toes crossed that everything works the way you want it to. -Heather
  19. heathber

    I lost count at 15, but I did see the player leave and the gorilla. I knew at the end that the curtain had changed but didn't see it change, does that count?. It certainly created overload!
  20. heathber

    Marjie this group is fluid, people come and go as their situation changes, but there will always be someone here. reach out any time you need/want to. We love to share victories as well as help with the bad days. Everything is different for each of us but also the same. You will get through this. -Heather
  21. heathber

    just remember penguins are really graceful once in the water. Although when I was in Antarctica (pre stroke) watching baby penguins learning to swim in 6 inches of water was hilarious.
  22. nice to hear that things are improving. this is the thing with all stroke recovery So frustrating for all involved.
  23. heathber

    That sounds great Tracy! And yes I can understand how your particular issues could so easily mimic bipolar and other problems. And what is happening for you at the moment is exciting so you are allowed to be/feel a bit "crazy". I do hope to be saying "happy housewarming" very soon.
  24. heathber

    Marjie watch out for negative self talk! which will be very hard if your sister is also reinforcing it. You are on a journey to reprogram and rewire your brain and your self talk will be a vital part of that. You are not sick or diseased, the cancer is sorted, your brain is temporarily broken. and these are separate things anyway. You are recovering and you are a worthwhile person. Your sister has no right to take the high moral ground or to take her frustrations and probably fright out on you. you're not pitiful you are reaching out for support and we are happy to provide it. Hang in there!
  25. heathber

    Gorgeous! Nice to know he's doing better now. Enjoy your visit