Stroke Survivor - female
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About heathber

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    Senior Mentor
  • Birthday 05/23/1965

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  1. Hi Scott, thanks for explaining so clearly. I guessed it was something like that. My sensory nerves in the affected arm are also screwed up, but thankfully my brain has so far not wired the "lost" nerve signals to "pain". In my case if you touch my arm I know I'm touched but not necessarily where I'm touched so it's also linked to my lost proprioception. They call it loss of touch discrimination. It's a silly game you can play. - I shut my eyes and someone else touches my arm and then I have to touch the same spot with my good hand. I 'm often out by over 6 inches. Although some days I can do it. I also can't identify objects placed in my left hadd that I can identify if they are placed in my right.
  2. Linnie there's always someone willing to clutch at straws. I know if we wait for fully scientific proven treatments we may never do anything and I use clinical trials to get access to newer treatments on an "it can't hurt to try" basis, but anyone offering miracle cures needs to be treated with skepticism especially if they want serious money for the miracle, clinical therapy trials are usually free. It will be interesting to watch how the spider venom experiments progress.
  3. Keep us updated on progress Scott
  4. Virtual hugs from this side for both of you and anyone else with CPS. So glad I don't have it. It probably doesn't help but I've been watching a fascinating UK doco called "The Doctor who gave up drugs" It's largely about antibiotic resistance and how modern medicine is dependent on pills that often have more problems than benefits. He did a fascinating "experiment" on a lady with chronic pain to prove to her that the pills weren't helping and she should be doing her exercises instead. She did not have CPS or anything like it. They took all the pain meds out of her house so she couldn't cheat, She had been routinely taking near maximum doses of both paracetamol and codeine daily. So they gave her a preloaded pill box and told her that some of the tablets were real but some where placebo so she wouldn't know on any day what they'd actually given her,and asked her to keep a pain diary. after a month they came back and graphed the actual meds over the pain chart. they had actually weaned her off both meds without her working it out, and she had been drug free for 2 weeks, and she could then see that the exercises were what was controlling her pain not the pills. Fascinating stuff but it doesn't help with getting Doctors to be sensible about pain meds. for CPS
  5. Hi Janelle, it's a big shock but sometimes weird stuff happens, my family reacted the same way when my nephew was diagnosed as Type I diabetic at age 17. It was always a risk for him as his Mum had gestational diabetes when growing him. At least there is enough diabetic history in my family that we all knew what was involved. Hopefully you are Type II and you can reverse it with diet and exercise. (although the exercise side is always more tricky for us strokees) I assume you also have a referral to an endocrinologist. Just remember that it can be easily managed these days and is nuisance value not end of the world. Hugs -Heather
  6. Scott, all hobbies are therapy! It's one reason the OTs make such a big deal of getting you going on your hobbies again before discharge (at least in inpatient rehab they do). I believe there is even research that shows you brain will be more plastic in adapting to something you enjoy doing.
  7. Hi Tracy, Autumn is supposed to be coming (we don't call it Fall as only imported trees loose their leaves here), but right now we are having a late hot Summer. It was over 30 degrees both days of the weekend and it'll be in the high 20's for the rest of this week with rain and thunderstorms. This reminds me of the weather we used to get when I was a child (and it got silly hot once we went back to school in Feb/March, but as an adult I don't remember any other years where I've been wearing a sundress in the middle of March. The big thing taking up all my planning skills at the moment is my trip to New York in July. I'll be staying in Brooklyn for 10 nights exploring NY City then a 7 night cruise to Bermuda before flying home again. I need to get walking fit before then, so I'm working on my endurance, distance and speed. I want to be able to walk 10km in under 3 hours, without it wiping me out for the next day, before I leave. I did a 4km yesterday in under 90 minutes, I'm a little slow/sore today but not wiped out so I think it's achievable.
  8. Also remember you only know what you can do once you give it a try. If you try and it isn't for you or it's too much now then that's something else you've found out, and you can always have another try later. There's a difference between not yet and never.
  9. That's wonderful Kelli I'm so pleased for you. I had a similar response when I was finally referred to the surgeon to fix my shortened calf muscles. In my case only 5 years after asking EVERYONE if there was anything that can be done to make my leg more functional. My miracle man was also a pediatric specialist. You feel slightly silly sitting his waiting room but what the heck if he can help.
  10. I hear you Janelle, me too. When I 'm doing well it's way to easy to do too much and cripple myself for the next week. It's the old "make haste, slowly" thing that I hate about stroke recovery.
  11. That's a hard one to answer. Nothing wrong with telling it like it is, but if you know you're having a bad day, maybe put that in the response too. so preface your answer with "I'm not feeling too positive today myself, but..." We are your friends and we take you as you are each day, don't feel obliged to put on a brave front for us. There should be enough people feeling positive on any one day to balance your response out and seeing others struggling can actually give strength to someone else who's also doing it tough right now. Trying to be other than you are doesn't help anyone, especially you. Hugs -Heather
  12. Change can be tough but it often helps to get out from under each other's feet. My sister and I fought like cats when we lived under the same roof but once we each had our own lives we got on much better and are now good friends. We even choose to go on holidays together sometimes. Also while I love my mother I could not live in the same house as her for very long without us both blowing a fuse.
  13. Oh the jet lag without even the fun of going anywhere. But getting up in the dark every day would irk me more. The hardest part of winter for me is having it not fully light outside when i get to work and it also being after dark when I leave work each day If we didn't change with DST in summer the sun would rise well before it was time to get up and would set as I was getting home from work. I find this way of doing it much easier overall. While the changes are annoying and it takes me 2 - 3 weeks to adjust each time I understand why we do it .
  14. in the black header at the top of the page next to your picture and name with the drop down box that lets you update your profile there are 3 other buttons, "Create" , "notifications" , "messages" When you click on the in tray it opens a pop up window with your inbox with your PM conversations and a button to start a new PM I assume that when you have a new message it will show a counter on the button (that's what most sites do)
  15. I don't usually sign out. and when I sign on I usually tick the keep me signed in box so that the sign in is automatic next time if it is needed. If you really want to sign off e.g. if you're using a shared computer it's in the drop down menu from your username in the top banner.