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Betty Jean

A Little Update

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First of all I want to say THANK YOU to everyone here! I have been reading when I have a few minutes and have found a great deal of help here and part of it is knowing that I am not alone. That in itself makes a world of difference to me!

 

Now for a little update on Jim. He is showing progress every day.The therapists have him up trying to walk and, while he can not do it by himself, his left leg can move but he has very little control over it as yet. It does give me reason to hope that at some point he will regain most of the use of his leg. Jim's left arm is also showing signs that the muscle wants to come back. The therapists tell me that they can feel some response when they are working with his arm trying to "wake it up". I'm very excited about that!

 

There is one really major problem that is giving everyone fits and if anyone has a clue how to fix this I'd love to hear it. You see, he had a major right brain stroke. Part of the brain that was affected is the part that says "yes, I had a stroke and things are a little different for me now but I don't see what all the fuss is for because there is nothing wrong with me." Jim thinks that he can get up and walk just like he always has, dress himself just like always, feed himself, drive, go to the bathroom etc just like he always has because there is nothing wrong with him. He has gotten out of bed and fallen down, gotten out of the wheelchair and fallen, gotten off the toilet and fallen but he doesn't learn. They put soft restraints on him in bed and he has figured out how to undo it. So far, he can't undo the one they use on him in the wheelchair and they never leave him alone in the bathroom any more. Jim doesn't see the need for rehab because he's been walking for 58 yrs and can do it on his own. The therapists are just putting restrictions on him and holding him back. Same thing with the pills. Anyway, if anyone has any ideas on how to get Jim's brain to accept that there is a problem I'd sure love to hear about them.

 

Betty Jean

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Betty,

 

Thanks for the update on Jim. I must say this is a first for me hearing of a survivor who's mind is still as strong as his. My body is at the point I know what I can't do in the same manner I once did. I guard against falling at any rate and in my near three years and have only fallen once.

 

I missed the curb stepping up (not watching my foot) on my last day of therapy one year ago. I'm at a total loss for ideas on how to get Jim's brain to accept that there is a problem.

 

I suppose he just hasn't processed the fact in his mind that a stroke has occurred and his body functions, although weak, hasn't indicated any difference, even after he falls. Sounds like a good question for his neurologist who should have sound medical answers to shed some light on Jim's condition before he really hurt himself in falling.

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Betty Jean,

 

I'm wondering if that is impulsiveness. I recall my husband talking about how he just "felt" like he could get up and walk, but he knew better. He had to really hold himself back -

 

I recall when we would help Rob transfer we would have to almost put our hands on him, to keep him in the chair until everything was ready - he often would jump up, or move before everything was lined up and we were ready to help him. His therapist called it impulsive.

 

Rob has gotten better to the point these aren't issues anymore - but it certainly was something we had to watch for the first month.

 

I am also wondering if you husband lost the use of his dominant side? Rob still has use of his dominant side and has litteraly bulldozed through life with his left side, it's so strong. I wonder if that is similar to what is going on with your husband?

 

-Karen

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Scooterman,

 

The rehab hospital gave me a book to read that explains a lot about strokes in terms that are easy to understand. It's a very good book. Anyway, one of the things it says is that a stroke in the right hemisphere can cause the victim to have complete denial of the illness. The brain will refuse to see that there is anything wrong, any paralysis or weakness on the left side and that makes rehab very difficult. It also makes it dangerous for the patient because if nothing is wrong then he just continues to try and walk or stand or whatever and falls down. It is still very early after his stroke but I guess Jim's brain could get the right idea now or stay confused for months. I don't think I can handle that. I'm going to have to hide the car keys, the motorcycle keys and disable the bike in case he has a key I don't know about. I need to make a list or something of all the things I have to hide or get rid of so that he can't hurt himself because he thinks he is normal. God! What a nightmare! Maybe after the surgery it will clear up.

 

Thanks for responding,

Betty Jean

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Karen,

 

I wish it were that Jim just "felt" like he could get up and walk. Jim knows there is nothing wrong and can not understand why we can't see that. He resents the therapists for making him do therapy he doesn't need because nothing is wrong. He resents me because I won't bring him home, I make him do the therapy he doesn't need, I won't bring him his cell phone (he can't remember how to use a phone). His right side is his dominant side so he still has that because it's the left side that is affected. I'm scared to death for him when he comes home. I don't know how I will be able to keep him safe.

 

Thank You for responding,

Betty Jean

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Hi Betty Jean,

 

I do believe, from what you are describing, that Jim's knowing everything is the same as before is a result of his stroke. It does sound to me like what they call "impulsiveness". He will have to relearn how to be careful. It may seem like he "knows" everything is like before, but it sounds like his stroke has affected his cognitive skills.

 

Bill thinks he is perfectly fine to stay at home alone. However, he can't read, write, doesn't know our telephone number, can't dial a phone and doesn't know my name other than "Baby" on a consistent basis. Is Jim getting speech therapy? That includes much more than speech I found out. He hasn't thought much of speech therapy - naming items in a category (animals, cars, flowers...) but those exercises are designed to help in getting the brain to WORK again. Another activity they have used is for him to list the steps he would take in completing an activity. This is designed to help with that impulsiveness. (What would you do in order to make a cup of coffee?) His view of it all is that it's a waste of time.

 

It doesn't really sound like denial, although I'm sure there is some of that too. I don't know whether they have used an alarm with Jim yet? The alarm is a "reminder" that he needs help when he gets up. It isn't a pleasant sound, and when a little weight is taken off the dumb thing sounds like somebody has robbed a bank - but again, it is retraining and would be a reminder to him that he has to wait for help. He won't like it, but it is probably needed for his safety. The hospital used it in Bill's bed and his wheelchair. I used the alarm when he first came home.

 

I've shared these tidbits as a result of my experience with Bill. These are some of those "invisible" results of stroke that I've learned about through Bill's strokes. On the outside everything looks great. We know it really isn't though. Karen (kkholt) described the impulsiveness real well. Bill's has lasted since his strokes.

 

God bless,

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From all I've read about strokes, YES, it sounds like impulsiveness which is common with right hemisphere strokes. In time that is supposed to subside, although of course that may depend on the extent of the injury to his brain. I don't have experience with how to handle it BUT I think the folks here have some great ideas. Eventually he will learn his left side isn't working well...

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:( Poor Jim, it is not his fault as he is in deep denial - I know because I am 20 years post stroke, affecting my left side, & was told until I accept my disability, being in denial would slow my progress - And for sure, they were right - it took years, but once I accepted my disability, progress was and is made every day

GOOD LUCK

June, a 20 year survivor :cheer:

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Hi Annie and Robin,

 

I truly wish that I could agree with everyone and say that it was impulsiveness. Unfortunately that is not the case. It is flat out denial that there is anything wrong with him. You can give him a t-shirt and try to teach Jim the way that he is going to have to put it on now. What you get in return is anger, "I've been dressing myself for 58 years just fine and I can do it myself just fine now. There is nothing wrong with me and I don't see why you people keep wanting to make me change the way I've been doing things all my life." Apparently the stroke has to hit a very specific set of brain cells for this to happen and it doesn't happen very often which is part of the reason we are having problems. If you were to sit down and talk to Jim you would have a conversation with a man with an extremely high level of intelligence who seems perfectly normal. This same man can not use the telephone, reason out problems the speech therapist gives him, and has no short term memory. Anyway, because this denial thing doesn't happen often it is frustrating for the therapists who are trying to teach him things he doesn't want to learn because there is nothing wrong with him. Jim has an alarm on his bed and he used to be kept in bed with a roll belt until he figured out how to get it off. Now that he can get it off, if he wants to go to the bathroom he tries to go by himself because there is nothing wrong with him and he has been going by himself for 58 yrs and ends up on the floor by the time the nurses get to him. They can restrain him in the wheelchair and he can't undo it and they don't leave him alone in the bathroom ever but the bed is a problem. Anyway, I thank you for your responses. The trouble that I am having here getting you to understand is the same trouble that we are having at the hospital trying to get those who really need to understand to even consider that this is a very real problem and Jim is not just being a pain in the butt. I don't know. Maybe I shouldn't post any more but it did feel good to vent a bit and get other peoples insights. I value your opinions very much since you know so much more than I do. Maybe I will just go back to reading and fight the battle on the home front until either Jim comes around or I figure out how to show him that there is something wrong with him.

 

Thanks so much for being here for me,

Betty Jean

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Well Betty, for Jim's safety sakes, I certainly hope and pray you, the doctors and somebody can figure out something to prevent him from hurting himself seriously by falling.

 

What ever the cause or reason, it's serious when he stand up and fall thinking he's ok, and he feels and think nothing is wrong. I remember the day of my stroke, the only sign something was wrong was my left elbow went numb. I stood up from the computer turned left and fell.

 

I fell a second time, by now I figure I got mad cow disease, I know nothing about strokes. Apparently, I passed out, got to the hospital some 5 hours later. A brain bleed stroke, the last thing I would've thought of happening to me with NO prior health problems.

 

I kinda think Jim is feeling that way, for 58 years he has been doing things by himself, what's all the fuss about. So Betty, I don't know how or when reality will set in, but I hope soon.

 

 

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Hi Betty...we are always here for you. I hope Jim settles in and accepts his limitations soon. :hug:

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Have you considered "neglect"? I know a stroke survivor who does not recognise anything on her left side. If you talked to her standing on her left side she would ignore you. I heard of a stroke patient who was scared of his left arm because he didn't know it was his or who it belonged to. This sounds crazy to us and I think it could be dementia.

Anyway, the longer he goes the more he will recover and it will be a long time. I'm sorry I can't help you much. God Bless.

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Betty Jean,

 

This sounds like it is so real for Jim. Now, how would he explain that his left arm doesn't move, when he wants to reach for something? How does he justify that his leg won't move if he is sitting on the edge of the bed, and you ask him to kick his leg out? I've heard that when people who have this serious denial fall, they usually accuse somebody of "tripping" them - or having a reason it wasn't their fault...... Does he think his arm is moving, when its not?

 

All I can say Betty Jean, is that for Rob, we had to "jog" his brain a lot. We would remind him of things he could do, and hadn't considered. Little by little, things started to click for him. For months he had problems with the right side (that is his affected side), and the running boards on his truck are now cracked and broken, to prove he had a bit of issues on that side. We just look at them and smile...... Thank goodness the neglect on that side has improved before we lost the whole running board.... it does get better.

 

-Karen

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Hi Everyone

 

I received through a private message the medical term for what Jim has. It was such a relief to know that there really is a word for it, not that it makes any difference in his condition. I guess it just validates it. Anyway, the word is Anosognosia. I have done a wealth of research since I got the word so I can understand better what Jim is feeling and I will be forever grateful to the person who sent me the information. Anyway, there is a lot of information out there about anosognosia as it pertains to stroke victims if anyone is interested. I am so glad that you are all here for me. It's nice to not feel alone. I hope that I can be supportive of others the way that you all are helping me through this. It's been three weeks now I think and I thank God in my prayers at night for everyone of you,

 

Betty Jean

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Good morning Betty Jean,

 

It's good for me to get on line this morning and see you have found the word for Jim's condition. I feel like my prayers were answered so he can be treated and not cause great danger to himself in trying to do what he thinks he can do, yet his body is unable to do because of his stroke.

 

I could just picture him trying to do something he feels he can do like riding his motorcycle and killing himself and/or others. In your research I'm sure they recommend what you need to do, so good luck Betty and let us know how things are moving along from time to time, Okay? :D

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Betty Jean, I read some of those articles on Anosognosia and oh boy! that is going to be a difficult one to work with. It differs from denial in that it is the reality for Jim that he is totally well and the rest of you are just fussing about nothing.

 

I guess you may have to find an expert in this field who can find some work arounds for you and all the therapists etc working with Jim so you can convince him to do the therapies without destroying his faith in himself.

 

As a loving wife and caregiver I am sure you will find a way. Hang in there.

 

Sue.

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From all I've read about strokes, YES, it sounds like impulsiveness which is common with right hemisphere strokes. In time that is supposed to subside, although of course that may depend on the extent of the injury to his brain. I don't have experience with how to handle it BUT I think the folks here have some great ideas. Eventually he will learn his left side isn't working well...

 

Not being picky or questioning, but I thought impulsiveness was the result of left brain stroke? Mom is very impulsive and forgetful of even the littlest things. She still thinks she is cooking and cleaning and has not done them in months!

 

I just did some checking and you are correct! Love the internet!!

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BETTY JEAN - HAVE THE THERAPISTS USED A MIRROR?

 

ITS HARD TO DENY WHEN THEY PUT YOU IN FRONT OF A MIRROR AND TELL YOU TO WALK TOWARDS YOURSELF.

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