heathber

Stroke Survivor - female
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Everything posted by heathber

  1. So glad you got someone Janelle. A good support worker will ask how you want things done and do it your way. But over time they also learn how to work with you and it becomes a partnership.Sabine now does the regular stuff without me asking. Deigh I’m surprised that Valerie gets care workers for personal care, but you both don’t get home help. My aged care is means tested for house work, but will still kick in for personal care if there is a medical event. The Australian system has worked out that people do better in their own homes and is setup to facilitate that for as long as possible. When Mum needed personal care support after getting out of hospital they also got basic home help even though they are self funded retirees, no gov. pension. I think the personal care was fully funded, but the home care they paid for.
  2. I had my first serious fall on Jan 5th. I’ve had plenty of stumbles and few over balances in the years since my stroke. Mostly I tuck in time and don’t do major damage except to my dignity. This time it was a Friday night and I must have been tireder than I realised, as I did the right foot pivot turn in my toilet door and didn’t land the bad foot cleanly. I staggered backwards and lost my balance landing on the laundry floor after sliding down a cupboard door. Everything hurt. I did the usual lie there snd don’t try to move until you do the mental body part inventory, then I did another curl to get away from the glass back door and sort of rolled over enough to get my feet under and pull myself up using the laundry bench. Shook myself and went to bed. Woke up the next morning with major chest pain and unable to roll over. Swore at myself. Lay there for a while dozed a bit then called the cavalry (Dad came over, by which time I’d managed to pull some clothes on, and took me to the local emergency department. Verdict was no broken bones, just bruises and strained muscles. I’ve had bruises like this or worse from other falls but they are nuisance value only, and while spectacular in colour otherwise pretty harmless. Having strained muscles and ligaments around my ribs was a new one for me though and that hurt, and I was still in pain 3 weeks later, which was bad enough to stop me exercising.. l’m fully tecovered now, but that one scared me.
  3. Glad you got approval for your chair. And yes cats have staff/slaves.
  4. My Podiatrist uses the dremel sand paper thing except for my big toe nails which need the clippers. He also holds my left foot very tightly as it can’t be trusted. But much les chance of infection at podiatrists than the nail salon, so its worth the extra bother especially as you’re diabetic and they need to keep an eye on your toes for capillary damage.
  5. I have a lift recliner in the apartment. Bought long before NDIS. Like you Janelle I’m tall, my chair is too big for her when Mum visits. As always Jade thinks its her’s and wants me to sit on the front so she can be cozy between me and the back. She does laps only very rarely. I think she didn’t feel safe on my wonky left leg when a kitten so she never got that habit, but she loves to sit next to me. These days I don’t use the lift feature so much, A push n the right armrest is usually enough, so long as I’m not too deep in the chair.
  6. They have one at my gym. No idea how practical it would be to get for home. But if not good old heat pack in the lap and/or on lower back when sitting helps.
  7. Yin Yoga stretching and Pilates core exercises should help too. But it sounds like you’re already doing the right things. Keep your fluids up and maybe look into an infra red recovery sauna? I’m often quite stiff in the legs and lower back, because I do quite a lot of therapy still. Recovery days help, as does my regular tune up manipulation massage session with the Physio. Heather
  8. Hi Janelle, organise for a regular support worker, just a couple of hours a week. You’re on NDIS its no business of the others in the house, what you spend your hours/funds on. Knowing it will get done, takes lots of stress out, its not a waste. If Wayne and the kids do stuff for you that’s a bonus and you can offload some of the mental load and just say thanks. My regular worker helps with all sorts of stuff, as well as the regular house stuff we cook, garden, go for walks/hikes, catch up on “spring cleaning” tasks, all the little jobs that I can see but not do properly/easily any more. Including things like worm/flea treatment application on a reluctant feline, and getting knots out of her belly fur. We’ve also done things like put furniture together, and pack suitcases. Mum and Dad are always happy to help but I don’t like asking them. Sabine calls it “other duties as directed” and it ranges from cleaning the shutters and putting fuel in the generator, to helping me change batteries in the remotes, and putting cable covers on. It took me ages to be able to sit back and let Sabine do things on the bad days. But knowing she’s coming makes it easier to ignore the “not done” things for a few days. I recommend a white board on the laundry wall to keep a list. Which has the bonus of making the list visible to others, without you having to nag. And then whoever does something can erase it, and you can add things and then ignore them because they won’t be forgotten. Try to be kind to yourself. Which includes learning to let some things go. We’ve spent decades being the one doing everything and carrying the mental load for a family, keeping everyone organised. Its hard to let that control go especially when you can still see all the stuff, and it feels like the others can’t.
  9. Interesting to hear this Alan I have avoided Baclofen as it is a systemic treatment that will relax all muscles not just the spastic ones. Are you finding any issues with over relaxation of non spastic muscles? I’m still using periodic botox injections for my worst affected muscles, and finding that very effective. Each treatment lasts 3-6 months but I usually wait 12 - 18 months before getting it redone.as it takes another 6 months after it wears off for the spacticity to become painful and/or unmanageable.
  10. Hang in there. You will feel much better soon. In the mean time retreat into blankets, hot packs and soup by the fire. If you give in and embrace the experience it passes much quicker.
  11. Nope you need to be rich and/or willing to give up other things. Mum’s script costs her $200/month
  12. You may surprise yourself Janelle when it comes to baby care. A hell of a lot can be done with one hand only. But they do know/feel if you are nervous. New borns are easier than a few months old they squirm less, especially if their parents have swaddled them before giving to you to hold.
  13. Asha, too much advice feels like nagging and judgment to the receiver, especially if they have not asked for advice, you can easily push them away by doing this. You need to have faith in them and your parenting, if you’ve done your job right they will have good grounding and knowledge to make their choices. And remember what is right for them is not always what you would like or choose for yourself. Trust them to be their own best self, and make sure that they know you will always be there to help if/when things don’t work out as they hoped or planned. The old adage is true in this case “if you love something let it go, if it comes back it’s yours, if it doesn’t it never was”
  14. Medicinal Cannabis is available in Aus for a range of conditions. But if you take it you can’t legally drive. Recreational use is banned still. I’ve recently been through the rigmarole required to get it for my Mum. There is a product here called Restavit, which Mum uses occasionally for help staying asleep, although her cbd oil helps with this too.
  15. heathber

    COVID

    I still haven’t worked out how to not overdo it. And its been 13 years now since my stroke. I appear to be a unicorn, so far I haven’t caught covid. But saying that, probably means I’ll get it tomorrow. Only place masks are still seen regularly here is healthcare and supermarket checkout staff. I still wear a mask in lifts and when shopping but very few others do. Take care Deigh, hope you’re feeling more yourself soon. Heather
  16. yep Saturday was disabled surfing Day and I had a ball, but I slept all through Sunday. Completely forgot I was supposed to meet friends for a local theatre company performance on Sunday afternoon.
  17. You're all looking great in this photo. Say Happy birthday from me ( even if she has no idea who I am 🙂 )
  18. Hi Deigh, its basically anecdotal, but most stroke survivors I’ve spoken too are much more prone to colds etc. after stroke than before. We seem to get run down easier and for longer. Possibly linked to our ongoing fatigue issues. My neuro physio also mentioned it to me. Things like sunburn will knock me much harder now than they used to. Also its a recognised symptom for POTS, which is one of those odd syndromes that seems to be related to many post stroke symptoms, and damaged autonomic control systems. I’ve also been told it may be part of the after effects of white matter damage. Current theories suggest that white matter does more than they originally thought. It seems to be linked to many autonomic control systems. Like temperature control and lymphatic drainage. Immune cell control is also strongly related to the autonomic systems, although immune function is not considered a direct part of it. I know that my autonomic control systems are pretty stuffed up on my left side, and I had a massive hit to both grey and white matter which you can see on my MRI scans. a friend with POTS suggested I get a referral to a dysautonomia clinic/specialist, but I haven’t followed it up yet. I would love to know if someone is studying if there is link or not, but so far they assume/say that our immune systems are not compromised by a stroke, but I don’t believe that.
  19. Covid does seem to have many lingering after effects for a great many people and as we already have screwed up immune systems (Just because no one has bothered to study it for us doesn't mean it's not true), it seems logical that we are likely candidates for long covid or these type of issues. So glad that so far I've managed to avoid getting Covid (unless I had an asymptomatic dose). Take it easy Deigh and hope you feel better soon.
  20. We’ve lost the habit of being here. It’ll take time to get back to doing this regularly.
  21. Hi Tracy, all good with me. I’ve moved out of the city to my family’s. property in the country. So many people have discovered they can live regionally since the worst of the pandemic. I still go into town for a couple of days a week. I go into the office for 1 day and I go to physio at the hospital and have my in home yoga session. But mostly I’m in the country with the nearest village 6 km away and the local town 25 minutes drive in the other direction. Mum and Dad live in the village which means I can help them when needed and vice versa. The property I live on is a large forest block with a conservation covenant so lots of wild birds and animals, very grounding and relaxing. Before Covid I used to spend 1 or 2 weekends here a month, but the idea that I could be here nearly fulltime never really crossed my mind.