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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. What she said, been there done that! that arm has a mind of it's own. you just can't trust it to do what you want.
  2. Jay that is the only way to approach this hurdle. As you say it's not immediately critical they are taking their time. so try not to fret about it and take the time to talk to your doctor about the options and what this development means for you. It took a year to grow to 2mm x 2mm a couple more weeks are unlikely to make much difference. And until you see the doctor again there's nothing you can do that will change the situation so go have fun and put it out of your mind until the appointment. I know easier said than done but the big question of a life well lived - if you knew for certain that you will die tomorrow, no matter what you did today,would you live today differently?
  3. It's always worth another try, but the more you can do before the injections the better the result will be. If you are using the muscles the botox "spreads" better and also you can exercise the other (non target) muscles. At a minimum you need to be able to stretch the injected muscle several times a day if the injection is going to be any help long term.
  4. Deigh, if you go to a compunding chemist they will have the old fashioned simple tablet containers. At one point The manufacturers of my regular tablets started double foiling them so you had to peal this backing off them before you could pop them out of the blister pack. So I took them back to the chemist and they put them into a container for me. Thankfully enough people must have moaned that they stopped doing it and went back to the easier packing. The silly thing is that children would have had a much better chance of getting at those tablets than most adults.
  5. Hi cypher, Ranting is fine here. we are here to listen, and though every stroke is different they are also enough alike that we get it. You'll hate me for saying this but you're only 1 year into this journey don't give up yet. You will find that there is joy in this life if you are willing to go look for it. I so get that useless lump of flesh that was the left hand. Unlike you I have managed to re-find my left leg (mostly) but the left hand and arm are still a work in progress. Yes I cut my hair short, and I have to be careful about choosing clothes but I am functionally independent. (much as I hate that term as it doesn't capture how much I can't do like I used to) But the key here is to find new ways to do stuff, It is possible. And with regular therapy and training the walking has become a lot more automatic. Hang in there, keep working and know that you can beat this. -Heather
  6. Hi Michael and Meghan, Yes it's a long hard road and there will be many more ups and downs but You've handled the first bit you can do this! The doctors and Insurance like to think that at 12 months you have what you'll get, but don't listen to them. That is old thinking, and as you say if you keep working at it things will improve, maybe not fast but it does happen and will keep happening so long as you are are challenging the brain to keep adapting. Life probably won't get back to exactly what you had before, but you will both learn to deal with this and adapt to your new life. We never really stop missing who we were and what we used to have, but life is good even so and you need to laugh and enjoy it. I do hope you both get over the communication hurdle. Independence and a sense of control are vital. Please don't try to shield Meghan from the decisions, She needs to have some control over her own life and body. Give her options and let her choose whenever possible, even if its just little things like what colour socks she wants to wear.
  7. I'm trying a night splint again. The theory is that if the hand can't contract overnight it won't be as stiff. So far I'm in the acclimatise phase, it's weird. My hand is so "cross" by the time I get the damn thing on that it spends the next hour "moaning" not looking forward to the review on Monday. At least I'm not getting any pressure spots from it.
  8. I don't think I've ever met a demented weasel, but it sounds like your results are much like mine. Thankfully family is not as judgmental of my results as I am.
  9. Pretty much what Scott said. Some days I'm frustrated and out of patience with myself and this whole thing but most days I'm good at being a duck. I accept that life is what it is and what I can't change is not worth getting cross at. The big challenge of the year is looming for me. I so used to love wrapping gifts for Christmas, these days it just shows me how cack handed I have become. It takes forever and I'm never happy with the result, but I still refuse to let others do it for me.
  10. Hi Heather ( another Heather here), I can't help much with the anxiety side of it, thankfully I've not had that sort of issue, but it's not uncommon. Is the numbness a lack of sensation or reduced sensation, or heaviness, or something else? In the first 6 months after my stroke I had no sensation in my left arm (I could not tell if anything touched my arm or hand and I did not know where it was without looking at it.) The OT got me to do nerve stimulation exercises to encourage the brain to reconnect to it. It has greatly improved since then I now have basic position feedback (although I don't completely trust it) and I know when I'm being touched even if I can't always tell you exactly where I'm being touched or what with. I still only have very minimal conscience movement in that arm/shoulder and no practical function. The nerve stimulation stuff is easy if you want to try it. It involved having a sink/bucket of cold water next to one of warm-hot water. I had to put the good arm in the cold water and measure how long I could stand it while also concentrating on what it felt like, and then put the bad arm in the cold water for the same length of time remembering what it should feel like, then repeat with the warm-hot water immediately after, repeat that cycle 3 times, then the same mental process while drying the arm with a rough towel. repeat the whole thing at least twice a day. Over a week or so the brain learned those sensations and their contrasts and after about a month I was able to pass the hot cold touch test with the OT. The explanation I was given for the blue/cold I get (mostly in my foot but occasionally in my hand) is due to damage to the auto immune functions which are thought now to be a function of the white matter in the brain (for many years the white matter was thought to be passive filler, but new research is suggesting that is does actually do stuff, and stroke damages both grey and white matter) your autoimmune system looks after things like lymphatic drainage and temperature regulation. The subconscious systems that keep the body operating, not just fighting off disease.
  11. No you can't. You may want to explain to her that there's a difference between listening to advice and following advice. But lots of people seem to think that us stroke survivors lost ALL our marbles when we had a stroke when most of the time while we might have lost some things we also gained a new appreciation for others and our priorities in life are not what they used to be so we don't always do as people expect us to. So your decision will be based on other factors than those your daughter may understand or like, but that doesn't make your decision any less valid. You are a grown up and she needs to let you make your own "mistakes", just like you let her make hers. -Heather
  12. The slight nervousness appears when your subconsciousness mind is not convinced. You need to let the rational mind tell it to go away which is not always easy to do as you've found. So you do what you are doing and you look at the things that are in your control and you work with those. But still that little thought from the depth escapes. So you look at it and say hi to it and then tell it to go away it's not needed. Fingers crossed for you. Hugs -Heather
  13. Ed you listen to everyone and then you decide for yourself based on if a consensus appears and how you feel others experiences match your own situation and risk profile. The motto "first do no harm" can be helpful here. it often comes down to the practicalities of what you can manage. Anyone who says "this" is the answer to everything needs to be treated with a degree of scepticism, especially if they will benefit from you choosing "this".
  14. If it works for you GREAT!
  15. I'd start with U3A, U3A is university of the 3rd Age, a lot of it is online or other forms of distance education and it's designed for people returning to study later in life. Here you can get special U3A only courses or access to a traditional University course via U3A enrollment. From what I can see the U.S. equivalent is "Learning in Retirement" and you would need to check out the offerings at the University in your area, I can't see any overall governing body in a quick net search.