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Russ

Anxiety, anger, isolation, and depression

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I was so bad at first...couldn't walk, stand straight, nauseous all the time, vomiting was common, patterns moved increasing my central vertigo, sometimes I felt like things were moving around me or I was moving around them but was really still, I couldn't look at walls with any texture or pattern because I felt I could fall right through them, I could not balance with my eyes open much less closed, in fact when my eyes were closed I couldn't tell where I was in space (right side up, up side down, sideways, etc.), I also had and still have a really hard time seeing in the dark or rather balancing (learned to balance with my eyes at PT), I also saw things (hallucinated <--- I have a hard time accepting that) in the dark like whispy almost ghost like things...they were always white or see through white and moved like the wind was flowing through it really slowly. I also saw my white cat everywhere lol even though she was not there. It took close to a year of PT 3 times/ week before I could compensate decently. Now many times I am in control of my balance. Big stores, tall open stores, malls, crowds, loud noise, night, not getting enough sleep although I feel like I never get enough, being put on the spot, headache (often), heat, a lot of visual and auditory over stimulation, I could go on... affect me and what problems I can have because of them. Balance is one of them. I can't run but I can walk on a treadmill now which I couldn't for a long time. I fall easy without any warning due to all sorts of things...a bump, uneven ground, a rug, my own feet/shoes, stairs, the list goes on lol. I can drive...this confused many people around me but because I am sitting and in a small area with my seat belt on I feel more grounded therefore way more in control of my body which means better balance though I really need to be alone and I need quiet (I am now extremely easily distracted). Some days I feel pretty good and others I have lots of issues. If you haven't had vestibular PT yet that would be my first suggestion and repetition of balancing activities/excercises. The more you practice the better your control. I don't have any answers for you about if it will go away or not. Good luck. Learn how the human body balances, what parts of the brain/body/senses play a part, and work on using what works the best.

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Russ

I have been this way for 20 months tomorrow, I am starting to believe that this might be as good as I get and that's hard to except 

all the treatments don't help in any way.............

"A man need to know his limitations" and I think I'm there

Ed 

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Posted (edited)
7 minutes ago, edkel1 said:

Russ

I have been this way for 20 months tomorrow, I am starting to believe that this might be as good as I get and that's hard to except 

all the treatments don't help in any way.............

"A man need to know his limitations" and I think I'm there

Ed 

Ed, I hope you are wrong about that.  I know everybody is different, but it took me about three years to feel my best.  Get headphones and listen to music a lot. I have read that that really helps the brain after injury. I have various audio players, and listened to music pretty much constantly while I was flat on my back.

Edited by Russ
Left something out. Verb tense

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I hope i'm wrong too but I cant keep going like on  this, I'm the guy that could do anything and now I'm a gimp......... help

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Russ

How long do you keep trying....... forever because I don't think I can 

Ed

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Just now, edkel1 said:

I hope i'm wrong too but I cant keep going like on  this, I'm the guy that could do anything and now I'm a gimp......... help

I know it's hard, but try to stay positive. I believe that truly helps. I am uncertain as to what your symptoms are from the stroke, but for me it was balloon headedness and nausea.

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2 minutes ago, edkel1 said:

Russ

How long do you keep trying....... forever because I don't think I can 

Ed

What treatments do they have you doing?

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Positive....... My family thinks I am embellishing my stroke, looking for sympathy......... I could go on and on I never quit now walking for five minutes wipes me out 

 

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I am going to the eye Dr once a week, I stopped everything because it was not doing anything

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7 minutes ago, edkel1 said:

Positive....... My family thinks I am embellishing my stroke, looking for sympathy......... I could go on and on I never quit now walking for five minutes wipes me out 

 

The same thing happened to me. My dad told me he didn't want to hear about my stroke, because it was in the past. I was pretty angry for a long time. The first 7 months after my stroke I literally wanted to murder someone, anyone. I locked myself up in the room with my dog because I would have probably not been very nice to my wife or five kids. I have 18 year old quadruplets and a 24 year old daughter. I had people at work making fun of me because I was on reduced hours. My boss where I work had to call 911 on me one day because he thought I was going to get violent. My mood sucked until just about 2 weeks ago or 3 weeks ago. That was the last thing to fall into place. The fatigue was probably second to last to leave. That has only been a few months, and I am over 2 1/2 years out.

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I did lose some of my peripheral vision in the right eye

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I'm just tired of everyone I go to saying they can make me better but nothing ever does

I'm dizzy all the time and have zero stamina and don't take the heat like I once did, gotta be honest this has gotta change because there is only so much one man can take

Ed

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So you had your stroke 2 1/2 years ago and its just starting to come around now, what are you doing medically to help out, any special treatments

Ill stand on my head,eat or do anything to fix this, at 20 months its getting unbearable.

Any help would be greatly appreciated

Ed  

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Ed the big thing is not to give up especially don't give up because you think nothing is happening.  brain healing is horribly slow and so is building new circuits and it builds in such tiny amounts that it's often not measurable. I find thinking of it this way helps. to lift your finger needs x force (signal strength and muscle strength). it's an infinite regression problem. if you can currently only generate x-n force then nothing is going to happen when you try to lift the finger but each time you try the gap between x and x-n is getting smaller( i.e. n gets infinitesimally smaller each time you practice a movement even if nothing actually moves. and then all of a sudden (or so it seems) out of the blue n=0 so your finger lifts. 

 

Multiply this by I don't like to think how many muscles and remember to contract one muscle always means you have to relax or turn off it's opposing muscle, so any functional movement involves a controlled sequence of muscle contractions and extensions, and even once you get the gross movement back getting those fine tuning sequences correct is hard!  So no wonder your brain is tired and hence you are tired.  But therapy and work need to be continued if you are going to see improvements.  A stroke knocks out all the automatic sequencing you learned as a small child. Sorry there aren't any short cuts.

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Oh ma, I'm going to lend you all my friends!

 

Family...not so much.

 

It's not that they think I'm milking things, I think they just forget.

 

My friends, on the other hand, my real friends...

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Ed, I just saw your posts tonight, or I would have responded earlier. I know it's hard, but you're going to have to make "a blind leap of faith" that we all know what we are talking about when we say "things will get better." One of 2 things is going to happen: Either the deficit itself is going to improve, or you are going to become better at dealing with it. Either way, your life will improve from what it is right now.  Becky

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I get much the same response from a lot of people:  "don't play the stroke card" or "you're just avoiding responsibility" or whatever.  I used to get miserable and upset; now I'm at a point where I am able to shut up and ride it out and think how grateful I am they *they* don't have to go though this.

 

And I take naps and little time-outs when I can.  Passover is coming up, with lots of _huge_ get-togethers with extended family and their friends (with whom I have very little in common).  At these things I usually try to tune most of the noise out, so that I don't overload, sit quietly and hope that no-one notices that I am there.  And if I do get dragged into lots of conversations, I try to find a polite opening to duck outside or into another room or any place quiet where I can sit by myself and recover.

 

The good bit about those sorts of events is that it takes an hour or more before anyone notices that I am not there and comes to look for me, by which time I've usually go some strength back.  These things were tedious before the stroke, they are (literally) unbearable since.

 

You just have to look after yourself; it doesn't help anyone to be a martyr.

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14 minutes ago, PaulNash said:

I get much the same response from a lot of people:  "don't play the stroke card" or "you're just avoiding responsibility" or whatever.  I used to get miserable and upset; now I'm at a point where I am able to shut up and ride it out and think how grateful I am they *they* don't have to go though this.

 

And I take naps and little time-outs when I can.  Passover is coming up, with lots of _huge_ get-togethers with extended family and their friends (with whom I have very little in common).  At these things I usually try to tune most of the noise out, so that I don't overload, sit quietly and hope that no-one notices that I am there.  And if I do get dragged into lots of conversations, I try to find a polite opening to duck outside or into another room or any place quiet where I can sit by myself and recover.

 

The good bit about those sorts of events is that it takes an hour or more before anyone notices that I am not there and comes to look for me, by which time I've usually go some strength back.  These things were tedious before the stroke, they are (literally) unbearable since.

 

You just have to look after yourself; it doesn't help anyone to be a martyr.

I have ignored these people or removed them from my life, including family. I'm sorry, I don't need their crap. I have better things to do... my parents don't get it, but my sister does and she is good enough in terms of having family around.  With the rest of the family, I am cordial but distant.

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In my case, my sister-in-law is a huge help and support (she's a well-respected local paediatrician, and got me in to see a bunch of top-of-the-line specialists).  She's also a really nice person.  So I can't just say "no, I'm not coming".  And I enjoy (some of) the company while I am able to.  I put up with the crap because I need those people in my life.

 

I just have to remember to pace myself, duck outside for a break when I start to feel overloaded, and remember not to tell any anecdotes as I'll lose the thread half-way.  Instead, I've turned into a "good listener' :-).

 

The "don't play the stroke card" stuff usually comes from people close to me when they are battling with something and need help.  I have come to realize that it's frustration and anger aimed at themselves or their circumstances, but expressed at me.  So I take a deep breath and let it pass me by.  And it is nothing compared to my internal dialogue, which is far more accusatory than anything that anyone outside could say.

 

"Cordial but distant" sounds like a really good technique for a bunch of the people around.  I'll try it and see how it works.

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My first Dream since my stroke... And it was a weird one

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I can say I have done both...exclude and learned to smile, nod play the quiet part. As much crap I get from my dad (yes he is not nice) I am living with him and his wife for right now (disability hearing next month say a prayer for me). So I have to put walls up and truly be a anti social quiet warrior lol. Last time I lost it I pointed to the lower back of my head and said "See brain? DEAD!!! DEAD!!! DEAD!!! B R A I N  D A M A G E!!!". Oh Lord I am glad I can laugh about it today. That was maybe a month ago...I would have rather taken my shoe off and bopped him over the head but I am civilized. I too have experienced the nagging, fussing, I don't want to hear about it, you're making excuses, something is wrong with your thinking, you are fine, blah, blah, blah. For my own sanity I have done both. Taken myself out of the dynamic or basically appeased who I needed to with deaf ears. Neither always work but they do enough where I am more in control of my own thoughts and actions. Both done out of necessity for my own sanity. I understand you both.

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Ok so Russ, are you saying you had your first dream since your stroke or something that has just flew right over my head lol? That happens. I actually have had the most vivid, realistic dreams ever since my stroke. Definitely weird ones too! I find myself still thinking I'm in my dream when I wake up. Sometimes can take a few minutes to come back to reality. Well that is my after stroke dream experience...it may be totally invalid to your statement but now you know. 😄

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My favourite expression is:

Don't expect anything, and you will never be disappointed. 

 

I actually thought I had made that one up...but apparently not!!

 

With family, I don't expect nice comments,  help, understanding...

 

Much easier to deal with when I don't have high expectations of them.

 

Sure, it's disappointing, but I can't keep letting them break my heart.

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23 hours ago, Russ said:

My first Dream since my stroke... And it was a weird one

 

I have dreamed regularly since about four years old. Anything from mildly pleasant ones (pretty rare) to super nightmares which can take some recovery from. Sometimes I've dreamt about situations that were so real that it took most of the following day before I recognised them as being a dream and fully believed they actually happened. Over a period of a few months once I found out how to fly in my dreams and that made things a lot more comfortable. I don't fly nowadays but two things are really interesting. One is that I still smoke and get annoyed that I will have to give it up again. The second thing is that I don't recognise my stroke and behave exactly as I did unhandicapped!

If I could take a pill to stop me dreaming I'd be very pleased to take it!

Deigh

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I've only recently noticed I've started to dream without my left arm. As in up until about a month ago in my dreams I had and used both arms, now I don't. It just shows how long it takes for the subconscious to catch up with a new reality.  It's funny there's no fear or loss emotions over the arm in the dreams, it just isn't there.

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