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Stroke Survivor - female
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About heathber

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  1. If you don't like the word disabled use "challenged" except when filling in forms etc. then being disabled is necessary, if you are going to get what you need. My Grandpa used to say "what's the point of being a blind, old aged pensioner, if you don't make use of it occasionally" He was the fittest, most independent 90 year old I'd met at the time, despite being diabetic and blind. You and I are not blind old age pensioners, but when it suits us we are "disabled", and the rest of the time we are "challenged". and either way we are bloody minded stubborn and independent. And we didn't want to do Jury duty anyway did we? I do recommend doing the neuropsych test/evaluation it helps to know exactly where you current limits are and they also give you pointers on ways to manage the deficits.
  2. The trials of having a good sense of relative pitch when those around you don't. Unlike perfect pitch relative pitch can be taught/learnt although it's easier if you start early so your chances with Valerie are slim.
  3. Pam I so understand this although I don't have the pain (thank goodness). Nearly 8 years later and I still haven't internalised how much longer it takes me to do the ordinary things. So I'm constantly running late and I hate it. I was always the early/organised one but not any more. When you work out how to get your head to understand the limits of the new you please share the secret. In the mean time hugs and congratulations to us both for still getting out of bed each day and getting on with life. -Heather
  4. More Hugs Hogarth, you are only 1 year into this, it does get easier and both you and your wife will make your own adjustments to the changes in your life. Be as independent as you can be. Life changes, nothing is forever, we can't go backwards so it's better to try and focus forwards. Hang in there and try not to be too hard on yourself.
  5. I have good days and bad days. Some days my gait is almost normal, other days I 'm barely a step up from the zombie shuffle. The thing that's done the most for my gait other than the muscle lengthening surgery which gave me back access to my knee and ankle has been running training. Also lots of drills up and down the gym/studio, high knee marching, grape vines, heel toe along the line, crab walk (especially with the band to add resistance) and what feels like a million squats and sit to stands, a lot of "soccer" drills in the gait ladder. if you watch a toddler in an adventure playground and copy a lot of what they do instinctively you will build back to a much more normal gait and movement patterns. Learning to lift the knee and push off with the ball of the foot rather than hitching the hip to bring your stubborn leg through is also vital. If you can get a gait analysis done so they can tell/show you what you need to change that helps a lot too. -Heather
  6. They are amazing! and yes I've seen that look many times
  7. Hi Pam, Good to have you back on the board/blog. I approve of stuffed animals especially where/when access to live animals is not easy. Thankfully I have a family/friends who think similarly I was given a great collection of soft toys while I was in rehab, I know they helped, the best was a full size articulated teddy bear that I called Lenin and kept in my hospital bed with me. don't let anyone shame you about bunny I like that she has her prayer beads as well. Hugs -Heather
  8. Mixed news but yeah to kicking it to the curb!
  9. Hi Ed, One small point I think you mixed up Cholesterol and blood pressure, given the numbers you quote. Either way it is important to know what you are taking and why so the first thing to do when you find a new GP is a medication review. Also I get that it is driving you crazy and you are going to hate me for saying this but 17 months into your stroke journey is just starting out. What you have now is unlikely to be the best you get if you keep pushing and working for better. There is no miracle cure and after the first 6 months or so it takes a lot longer to see and feel improvements but they do keep happening. Your Neuro is right your brain has to learn again how to do all the things you used to do and this time it's not young and flexible and neither is your body. I recommend finding a good myotherapist or other soft tissue expert to help with general muscle pain and spasticity management, I find my "good" side benefits from this well as my bad side as the good side is carrying more of the load than it should and your movement probably includes a lot of sub optimal movement patterns and compensations that cause other issues. Can your Neuro recommend a good rehabilitation clinic/specialist to help mange pain/dizziness/spasticity and your overall recovery plan? So my advice is keep working, dig deep find your stubborn and don't expect a magic solution, you already mastered "work your ass off" so take that and redirect it into you for a few years. It's a bummer that your wife is not willing/able to stick with you through this, but it is often what happens when something drastically changes a relationship. It might have happened sooner because of the stroke, but it sounds a bit like you may have drifted apart a bit before this. Try to look back on your pre stroke life without the rose coloured glasses and look at the life you both had from your wife's point of view. Also has your mood and approach to your recovery pushed her away? Many men have difficulty adjusting to a more dependent role. Hugs and try to be kind to yourself and her. This life is not without it's good things, although you may have to look a bit harder to see them. If this isn't living what do you want to do that is living and what do you need to do/change to be living? It is now our reality and there are lots of things you can do, so focus on the cans not the can'ts. You may be surprised at what you find. And if there are can'ts use the desire to change these things and set your goals appropriately try for some small wins rather than the overall I want to back to x% of what I had. little gains add up especially when they are focused on doing the things you enjoy doing. Also try not to let only the way you used to do something be good enough, there's satisfaction and fun in doing things differently to everyone else. Sorry if this turned into a sermon. Feel free to ignore me :) Hang in there and don't worry about venting here, better on here than at your friends and family. -Heather
  10. My family call it exercising my stubborn. we are taught that being stubborn is a character flaw, but it's also the character trait that gets people through these sorts of challenges. NEVER SURRENDER!
  11. Disabled Surf days are the highlights of my summer, being sick this year meant I only got to 1 of the 4 that are held a practical distance from home. The group who organise it are fantastic. But it only happens a limited numbers of times each summer once the water warms up enough. They take anyone who wants to for a surf, and cater for any and all physical or mental disabilities and all ages. It's just the shore break but it's the best feeling, and everyone has FUN The volunteers I've spoken to have as much fun as the surfers. The day I did get to this year I got dumped at the end of my last run, but I never felt unsafe the crew were right there ready to fish me out and I came up laughing so hard I could barely stand.
  12. Banjo I hope the flight went well and you enjoy your trip! Sue I know it's too late now, but I'm going to put this in for others. There are airport/airline staff available to assist with pushing chairs and managing bags in the terminal when you travel with a disability, you just need to request the service when you book your tickets.
  13. Kelli, Sand is very tricky. I was so pleased with myself when at my last disabled surf day I not only walked myself down to the beach I walked across the sand to the tide line without feeling all wonky. And then I kicked off my crocs and did it again barefoot just to prove to myself that I could. Mind you by the end of a surf day I'm a physical wreck and was glad to have one of the volunteers walk back to the club house with me. Your Bambi image was me on my first surf day, 2 years ago now.
  14. Interesting they have done both extensors and flexors for your big toe that's going to reduce control of both the curl and the counter movement. I assume that's about your overall cramp, but I'd be asking them why. Exercises and stretches are the key to getting the most out of botox, generally when a muscle has been spastic for a while it gets shorter and loses the ability to move voluntarily, also the opposing muscle gets over stretched and loses tone, so there's nothing really stopping the movement you don't want. So post botox exercises are generally around increasing your access to and the strength of the opposing muscle as well as stretching the treated muscle so that when the botox wears off ( it only lasts a couple of months) you have some long term improvement. Here the spacticity clinic wont do botox without an accompanying physiotherapy plan and measurable goals agreed with you before treatment. I do prefer to wear sandals while botox is active in my toes, It's easier for me to monitor what my toes are doing and means I don't get calluses on the top of my toes.
  15. That sounds brilliant although it doesn't help pay the bills.