Stroke Survivor - female
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About heathber

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    Senior Mentor
  • Birthday 05/23/1965

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  • Stroke Anniversary (first stroke)
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  1. Hi Becky and Scott, So good when you get a therapist that explores stuff with you. I so get the weak butt thing. My weak butt and hamstrings are currently causing me grief with left heel strike that I need to get to increase my stride length and walking speed. I'm going to have to try butt walking. I got my quads going well by knee walking but hadn't thought to try butt walking, will discuss it with the team next visit. Scott fingers etc. crossed that you succeed in the "brain/pain" training. My neurophysio does some of that with me and whenever we do arm work I have to describe any sensations so that he can reinforce the right ones. I think this approach is a large part of why I don't have CPS. He's been actively working to make sure it doesn't develop.
  2. Oh yes wjy do those of us in that mid range get so little support? I was 45 when I had my stroke and I learned very fast that I had to fight to get "the system" to acknowledge that I needed to access the help provided for senior citizens. And yes those family change rooms are marvelous things, I wish they were more common. Water therapy makes a huge difference it makes so many movements that you can't do on land accessible, It's mostly because the water provides support against gravity. as I learned quickly and still say constantly "gravity sucks". Your idea of a spa sounds brilliant. The thing that I want is the ability to hire a care with the hand controls I need. I've heard that this is available in the US. It certainly isn't here in Australia and it means if I go on a holiday I have to drive there (i.e. bring my car with me) or fly and then rely on buses and taxis. which is never easy in a strange town. It's not like the hand controls are expensive com[pared to the cost of the car and they don't stop the car being usable for other drivers.
  3. Kim it really is common, Have a look here and see if some of this info helps. https://enableme.org.au/Resources/Sex Overall take your time together and you'll find ways to enjoy each other again.
  4. Hi Pearls tempting as it is to "just eat ice-cream and forget it", that is not a healthy way to deal with it on either a physical or mental level. I think Tracy has the nub of it Define your boundaries, work out what you can do and get on with doing it, as others see you taking more control they should back off but you may need to tell them out loud that you can do this now. i.e. "Thanks for the help but I've got this now" Ask a friend to come over and help you rearrange the spaces that are no longer setup "your way" or that are not setup to make things easier for the new you. I'm still trying to convince my Mum that storing the large plates in the back of the crockery cupboard at our shared holiday house no longer works, as I can't get them out. One way to approach this is that you need to spring clean after your "absence" and re-familiarise yourself with what you have and where it is. Approach it as if you have just moved house. By doing this you should be able to reclaim the spaces and start to feel like they are yours again. Just take it slowly and do it in little bites, it will exhaust and overwhelm you if you try to do too much too quickly and them you'll be back where you started. Hugs -Heather
  5. We are at least approaching your story with several grains of salt. Let us know when you finish it :)
  6. Hi Tracy, I just want to echo Pam's response. All our past experience leads to who we are now. You don't want to forget but you do need to forgive (both yourself and Adrian) and move on. We've all made decisions and done things that in hind sight were a mistake but they still helped us evolve and going backwards doesn't work. As you are finding its often hard and lonely but there are people around you who care and who are doing what they can to ease your journey. You are loved and worth loving. Hang onto that thought, and be the butterfly not the caterpillar. Also remember we love you too -Heather
  7. Hi Joe, Thanks for letting us know. Fingers crossed the pain settles down quickly. I've never had a broken bone so I can only guess what it's like. But as you say sometimes you take a step back so you can move forward. Hang in there and do your physio as prescribed.
  8. So glad to hear you've finally found a good one.
  9. Hi Scott, Have you read "Lincoln in the Bardo" By George Saunders. I've only just started it. It's a bunch of ghosts in "limbo" watching Abraham Lincoln mourn his son.
  10. Yes suspension of disbelief is a key part of story telling. Never let the truth get in the way of a good story. It sounds like your story belongs in an historical setting rather than Sci Fi. Don't let it worry you too much. I've read some pretty unbelievable "historical fiction" that was quite enjoyable, even if I did occasionally go "WHAT!" You're writing for your own enjoyment, so embrace the quirks, and have fun.
  11. Asha I hope the times you need to list the things you can't do are few and far between. It's always disheartening to look at the "can'ts" in your life especially when you need to list them all at one time for someone, I do wonder if the people who create things like insurance forms realise how debilitating they are. As Jay said look at the things you love but also look at what you can do. When you have to list your "can'ts" balance them with a list (at least in your head) of your "cans". Life was not perfect before your stroke, and it no less perfect now. OK so I'll probably never make pretty cupcakes again but I can make a mean banana bread. Just don't let one bad/blah day turn into a lifetime of them You got this Heather
  12. Hi Jan, it could certainly be part of your stroke effects. I used to get overpowered by smells when I had a migraine. I'd be aware of a truck going past the end of the street not from the sound but from the fumes, smells are much harder to hide from than light and sound. Good luck with it. Going back to Joe's topic. That reaction is like what some people do in a foreign country its as if they think if they just talk loudly enough in English the person who doesn't speak English will understand them. Or people talk down to you in their "little girl" voice. As in You had a stroke, therefore you've lost your "marbles". When my "marbles" are just fine thanks
  13. Deb the main thing he has going for him is his will to work on recovery. So long as he is willing and able to put in the effort he will see improvement. It may be little and slow at times but the key is to keep him working at it. So far he's getting good quick results and that does make it easier to keep going. If your sisters start to tell him he's wasting his time that could easily become his reality. So make sure those around him are not telling him he can't unless of course he's a stubborn bugger like me, where if you tell me "you can't", I'll say "stuff you". Keep an eye on his moods and frustration level but remember, the more he does for himself the more he'll be able to do so this needs some "tough love" tactics. It may help if you explain this to him too, so he knows that really you care and you want the best for him, but it's also an individual thing. Every stroke and every recovery is different, there is no one way to do this. The big one to remember is to always ask "do you WANT help with that?" before you do anything for him, there's a huge mental difference between "want" and "need" that you as a carer need to internalise. One of the hardest parts of stroke is the way it takes away your independence. If many people suddenly start treating you like a child you just want to scream at them. He's been an Adult for a long time so understand and be prepared for his current limitations but don;t let him lose his sense of self worth if at all possible. All the best on this new journey with him -Heather
  14. Hi Joe, That last reply reassures me a lot . thanks. you've got classic spasctic "tippytoe" walk, but without the strength to control it. I don't have to imagine that pain I lived through a version of it, with my left foot eversion. My surgeon will also not do Archilles lengthening as he feels it's too hard to get exactly the right length, and if they are too long that's worse than being too short, he prefers to work on the calf muscles as he finds that gives a better controlled outcome. The recovery time is quite long but I was surprised at how quickly I was up and about again although it's only now 12 months after surgery that I'm getting any strength in the muscles he operated on. I was on Vallium for 2 weeks post surgery, both for pain and to relax the muscles and promote healing. They put me on a morphine pump for post op pain while I was in the hospital but I found I didn't need it and they removed it after 48 hours. The main annoyance is the cast. Although because it's designed to be walked on its in the way more than painful. Hardest part for me was first getting up with the walker when the ward physio was not neuro trained and tried to make me use my useless left hand/arm to stabilise and take some weight off the leg. She would not understand that I would be more stable and safer with my crutch than the walker.
  15. Hi Joe, I had bad foot drop in the beginning too. But as well as foot drop I had severe foot eversion. This meant I was unable to cope with the pain of an AFO (we tried 3 or 4 different styles). Anything that held my ankle in a fixed position would set off my foot eversion and cause cramps. I ended up using a Bioness which was able to lift the foot and as it was active not static did not create the tone reaction. What I'm saying is have you looked at what/why the AFO or brace does not work for you? I'm also concerned that the surgery can't be undone once done it's not like an AFO that you can adjust or take off. My eversion and calf tone eventually lead to shortened muscles (even with the bioness stretching the muscles in active range daily) that I had corrected surgically and now I walk without any AFO/brace or other aid.