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Hello my fellow survivors. I am about 32 months post hemorrhagic stroke. The rare one. I'm still numb on my left side head to toe and expect I will be the remainder of my life. I have mobility but very little sensitivity. Although more than at 1st. I can pick something up if I'm looking at it but would most likely not be able to feel something behind me to pick it up. I'm left-handed and that has been helpful as that hand had been in the game my whole life until 32 months ago so it refuses to be ignored. Time to ride around and perform that summer ritual of cutting grass. Thanks for the opportunity to blab!

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Hi Willis, Thanks for sharing. I also had a hemorrhagic stroke and  I am left handed also. Early on in my rehab, the therapists tried to teach me to be right handed in because it was uncertain if I would be able to write with my left hand. Using my right hand didt work out too well and fours tears later, my left hand is the dominant one again. Not as strong as it was and still have the pins and needles sensation,but much better than it was. I wish you continued success in your recovery. Glad to hear from another hemorrhagic stroke survivor...we survived!!

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Nice to meet you Willis. Always happy to hear your blab here, be it good news or bad, or whatever. Blabbing is good for the soul and as you've seen, chances are someone else here has been there, done that.  There is sensitisation training that you should try on the places where you are affected.  I did not have a hemoragic stroke but it made a huge difference to my arm, which was invisible to touch for the first 4 months after my stroke, and is still non functional. My discrimination is still pretty unreliable, but it did help my propriaception and my general sense of touch of that arm.

 

Just keep plodding

-Heather

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Hi, Willis. I'm a hemorrhagic stroke survivor too.  12 years out, and the numbness has never gone completely away. The "pins and needles" sensation went away, but not the numbness. You kinda get used to it because you can't feel it, until you have to use your numb hand for something. I never realized until I didn't have it, how often we rely on our sense of touch. I DON'T TRUST MY NUMB LEFT HAND TO HOLD ON TO ANYTHING THAT'S IMPORTANT, FRAGILE, OR CAN SPILL, because my hand, unable to feel the object in it, just lets go of it. Good luck, Becky

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Exactly! I have often been amazed at the things I can do with a numb hand! Becky

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It is weird, how there is a "hole" in your perception but over time it does start to fill in, well for me it did. At first there is nothing and then there is a sense of "hole", and you keep niggling at it and eventually there is arm even if it doesn't do what you ask, it is there.

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Hi Willis, welcome to the club.  

 

This is a great place to hang out, get some perspective, and find shoulders to cry on.  There is also some very very good advice from people who have dealt with this for far longer than we have.

 

My stroke was 3 1/2 years ago (ischemic), I'm still adjusting (and still seeing improvements). 

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Personally Willis I often read but only add a comment if I feel I have something to add to the discussion. Not everything is relevant to everyone. This is like any conversation at a group gathering, not everyone feels like talking all the time.  I don't think people are "hiding" or "holding back" if they choose to listen rather than talk.

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Willis, I agree with Heather here, I only butt in if I can add to the conversation.

Deigh

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I understand how you feel.  There is nothing quite like talking to the world and not getting a response.  In face-to-face conversation it can be quite devastating.  In forums like this, it is fairly normal.  Not everyone feels that they have something to add, or is in a position to take the time to respond, or is able to gather their thoughts or strength at that moment.

 

My stroke has taught me not to ascribe motives to people's actions.  In company, I tend to be withdrawn and silent, because of some significant memory issues which make it difficult to track conversations.  Before my stroke, I was always butting in, taking part, holding forth and so on.  It took my wife a l_o_n_g time to internalize that I was being quiet, not because I was not listening or not interested, but becauseI could not keep the conversation in my head.  

 

My in-laws flip-flop between not thinking anything (too busy talking about people I don't know and will never meet) or thinking that I am pre-occupied.  In business meetings, people think that I am thinking deep thoughts and/or judging them.

 

All the same behaviour on my part, different interpretations.

 

It took a while for me to get chatty here, and I like this space because I feel that I can contribute something useful (sometimes), and I can take my time composing my thoughts; I can follow my train of thought (usually) by reading what I have just written.

 

I DO know how you feel about writing and not getting a response, but I am now used to long delays.  They're just a symptom of members thinking about what to say, not ignoring you.

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Nicely put Paul, which is why I do usually try to respond, especially to new people.

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I've spent the last 3 1/2 years trying to teach myself to at least give a message of "I hear you, I have to think about this, I'll respond as soon as I can".  It's easier in email/online chat type conversations than face-to-face, probably more important face-to-face.

 

Some people get annoyed, but in the end that is their problem.  Not a lot that I can do to change them.  I get it from my family when they are in a hurry/tired/anxious/whatever; at least we can sort it out between ourselves once tempers die down.

 

Ultimately, it's all a matter of managing expectations (one's own and others')

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On 7/10/2019 at 11:14 PM, PaulNash said:

 

My stroke has taught me not to ascribe motives to people's actions

 

Paul, for a person who has trouble communicating with people you have remarkable skills at putting your thoughts into print. You are to be congratulated! 

My local health board issued me with a business card sized information disc that can be kept in my wallet. It explains in large print my condition as a recovering stroke victim and asks the reader to accept that I may be slow in answering and requests toleration. It is not a card I've used much but once or twice I have had to flash it when a situation has become tricky. Do you have the same thing?

Deigh

 

 

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Hi Deigh

 

No notification cards here that I know of.  I have thought of making my own, but then I would probably wax lyrical and end up with a 15-page breakdown of what they can and cannot expect, which would rather defeat the object of the exercise.  It's a great idea, though -- once they have finished reading the tome, I'll have worked out what to say :-).

 

If I'm stuck, I try to just say "give me a moment to think about that", no explanation why, and it's usually accepted.  My biggest problem is that my wife no longer accepts that, she just wants me to do a Hunter S Thompson if necessary and give her whatever I am thinking right now.

 

Re: writing; my mother taught English at the local university and was an English language Nazi.  So my siblings and I all ended up getting top marks for language.  I've lost a big chunk of my vocabulary, which is probably not a bad thing.  And complex grammatical constructs now evade me, as I forget how I started the particular sentence.

 

This is all way way off topic.

 

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I am so in awe of those who lost their dominant side, and regained it.

 

Absolute determination and perseverance. 

 

About the contribution thing.  I'm one who will try to comment on everything.  Even if it's only a comment of support.  Like for...oh gosh...the pain thing...

I don't suffer from that,  but I like you lovelies to know I care.

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