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Stroke Survivor - female
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About heathber

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    Senior Mentor
  • Birthday 05/23/1965

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  1. heathber

    It does sound like she has given up or is depressed, or a combination of the 2. I suspect waking you up is partly jealousy related. she can't sleep and resents that you can. Stroke can do all sorts of funny things to your brain and your impulse control, and even without stroke brain time goes awfully slowly in the night if you're awake when others are sleeping. Days of inactivity won't be helping that either. She needs to find her "purpose" I'm not sure this is something you can help her with. But she probably needs to talk to someone.
  2. heathber

    It sounds a bit like she has some emotional lability or Psuedo Bulbar Affect (PBA) Look it up on here, lots of stroke people have it. It can be reduced with medication but you'll need a psychologist to prescribe it (well in Australia you do). I understand from what you wrote above why you would be wary to try that route again, but I think it may help you both, maybe ask for a shared session so you don't get any surprises.
  3. heathber

    Hi Losthubby, I'm so sorry that you are feeling this way but given what you've told us also not very surprised. You can't change her, she has to do that. But you can change you. Start by deciding to be happy. Take some me time and look after your needs. Make sure you have at least 30 minutes a day where you do things for you, simple things like going for a walk around the block can make a huge difference. Consider starting a GLAD diary. https://www.healthyplace.com/blogs/buildingselfesteem/2014/10/do-negative-thoughts-consume-your-mind-try-this-technique Take control of both of your diets, cut down the carbs and empty calories. It's amazing how much eating well can make you feel better. Hopefully as you start to take more care of you some of the attitude will rub off on her too. Talk to her about getting into a rehab/physical therapy program and doing some regular therapy. I suspect that she is just as unhappy as you if she used to be active. Physical Therapy will probably not get her back to what she had pre stroke, but it can still give improvement on now, but she will need to be willing to work on it. Also some of her inaction is probably related to stroke fatigue which is a real thing. Fingers crossed you can both make a new start on beating this thing and forging a different path for yourselves.
  4. "wearing your heart on your sleeve" is definitely not socially acceptable these days. People don't know how to react to us when we are like this. I did eventually manage to convince him I was fine, "just laughing".
  5. MUST remember this one! So true and the perfect response to the people who insist on saying "you're so strong"
  6. heathber

    Unfortunately Sarah it does eventually get to the point where you have to be realistic about what you can manage without more help. You have done so much it's really hard to have to admit that you can't do it alone any more and there are limited options for getting what he needs. Try not to feel guilty, you did so much for so long, but you are also just one human being. I do hope you can find what you both need. -Heather
  7. heathber

    unfortunately there is no magic pill so yes you have to keep working on it. in home assistance here is organised through your GP and the local council when required. Can you ask your GP to help you find a new agency? I have found that if you can cut out 98% of the carbs for at least a week or 2 your body readjusts it's sugar expectations and the cravings almost go away, but I bet that's different and possibly dangerous if you are taking insulin. Healthy eating is always easier in summer! raw veg is just more appealing in the hot weather somehow. my go to for winter is soup! easy to make, easy to freeze in portions, ... Hugs and keep up the good work - you will get there! -Heather
  8. Every so often even with the drugs it will break through. I had a bout of hysterical laughter last week at the gym. I was doing an exerise of side steeping between cones and then tapping the cone with my outside foot. the first couple of times I did it I knocked the cones flying even with my good foot, I don't trust myself standing on my bad leg only. then I was so determined to get the d&*$%d thing right I touched it really lightly with my bad foot and then I lost my balance slightly and could not lift my foot up again. I ended up squishing it flat. The cones we use are designed to cope with this. but the way it moved as it came back to shape just set me off laughing and I completely lost it, laughing so hard I couldn't stop and the tears were running down my face, so I couldn't see straight either It was as much my trainers reaction to my reaction that set me off, he had never seen anyone laugh so hard they cried before, and certainly not over something so banal. It was hard to convince him I was OK
  9. heathber

    Will it still seems to depend on the patient and the root cause of the stroke. Listen to your doc. But also blood "thinners" come in 2 basic types, and some can tolerate one but not the other, and which you end up taking after a stroke depends on all sorts of factors the type of stroke you had is just one of them. Antiplatelet drugs are different to anticoagulent drugs. one stops clots the other reduces the small particles in the blood around which clots can form. "Blood thinners don’t actually make your blood thinner. Nor can they break up clots. But they do keep blood from forming new clots. They can also slow the growth of existing ones."
  10. heathber

    Nothing in life is ever entirely happy or sad. You can celebrate and be sad at the same time. Sure there are times I miss my other life, but mostly this life is pretty good and enjoyable. I settle for nothing is perfect. and the reality is you are better off looking forwards so take that deep breath and step forwards into the unknown. I may not ever do some of the things I used to do but I have plenty of new things I do now and life is full, as it always has been, remember there was a time in your life when you didn't play an instrument. And don't give up on running, hiking, camping, ball playing you are only 2 years into this. I know every stroke is different and you can't compare one survivor to another but I'm coming up for my 9 year anniversary and I have done the last 3 post stroke (admittedly not with the grace and ease of before) and I'm getting close to running. Keep working on it. -Heather
  11. heathber

    Nice to meet you Leia, give her a few months before you write her off cognitively. Even with TPA there is some brain damage, that will take time to heal, she may well improve. Usually 3 - 6 months healing is needed physically before you can be sure things are not going to suddenly change, longer when you're older. Mind you the older you are the less you bounce back from something like this, a simple thing like a fever is enough to trigger dementia if you are already vulnerable. Always, The best way to help is to ask what they want you to do, and then do as you're asked (If that is step back and let me make a mess of it, let them make a mess of it!). For many people the loss of independence and life control is more troubling than than any physical loss. If you can keep in mind their life values you won't go too far wrong. But it's worth having the conversation with your Dad now about his understanding of what your Mum would want and also what he wants going forward. I've just done this with my family as I've just setup my "Advance Care Directive"/ I think in the US you call this a living will. All the best -Heather
  12. heathber

    Very true Will, sometimes acrobatics are required to get off the sofa etc. I believe that coffee tables were invented for people like us to use for getting up off the floor! When people try to help you just feel more vulnerable I can usually trust a coffee table to not move, but watch out for furniture with wheels they are sneaky b*&^ds
  13. Hi Becky, the bioness is great and yes the freedom to wear any shoes you want is a bonus, but you do have to wear shoes, there is a sensor under your heel and a little transmitter attached to your shoe so the stim knows when to fire. maybe they have redesigned in the last few years but my lower leg unit was just under my knee, not just above the ankle. and it was 6 -7 inches wide, so yes no skinny jeans! and you can't wear stocking or tights, the electrodes have to touch your skin. But still more comfortable and versatile than a rigid AFO. Not that this has anything to do with food preferences. My food tastes haven't changed AS, but like the rest of you I do go for things that don't need a knife and fork, I find a fork can do lots more than people realise. I also use the slow cooker and pressure cooker a lot, as it sits on the bench and means I don't have to hold a pot and stir. Janelle how can you live without vegies! I seem to have some rabbit genes, my preferred lunch is carrot sticks, cucumber and capsicum with houmos or other dips. plus olives and and a cheese slice. Note all finger foods ! 🙂
  14. heathber

    Will, that's it exactly! I think that loss of desire to eat is not that uncommon. The first couple of years you lose weight because things don't taste "right" and you aren't really hungry but after that you start to gain and as you are less physically active its harder to get rid of any excess. remember that 1/2 inch is 1 whole cm so you certainly claim it
  15. So true Will, the only reason to spend time and effort understanding what happened the first time is to prevent a second time. but the reality is that most of the time its just bad luck. There are too many and varied reasons why this happens to prevent all of them. So you take a deep breath, pick yourself up, swear a bit, and get on with life.