I Need...

Louis Turbeville found the following. He credits http://healthcaresolutionsplus.org/
This is a good find. Thanks Louis.

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.
My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.
Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.
I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.
If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!
If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.
Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.
Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.
Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory. Know that not remembering does not mean that I don’t care.
Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.
If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.
If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)
You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.
If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)
If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.
We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.
Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

Spasms

I will call them "spasms" because that is the popular thing to do now. I know these things, though as primitive neurological reflexes. I remember being told in my MA program, "work right through them." They were something to be ignored. I am only saying my spasms were primitive reflexes. I can't say this about any others. "Primitive reflexes are automatic stereotypic movements directed from the brainstem and require no cortical involvement (thought)." http://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=3&cad=rja&uact=8&ved=0CC0QFjAC&url=http%3A%2F%2Fwww.eaglecanyonwellness.com%2Fold%2Fdocs%2FPrimitive_Reflexes.pdf&ei=eGNmVdb_Io63oQTY_4G4Dg&usg=AFQjCNGVl5L8S3M-lx0f6W3Mji0GtdM2sg&sig2=CRCp_CtsaiDVP1Eg4OxGXA  

I first noticed it years ago...I reached down with my left hand, with my head turned towards my hand. I went into spasm- my left arm got tight and my head was stuck there. It didn't last. I started saying words before I left that place. I asked the Occupational Therapist if it was ATNR (asymmetrical tonic neck reflex). She was surprised I knew such a thing, but she answered 'yes.'

ATNR eventually subsided on my left side. It has taken years. Now that I'm moving my right hand, it's starting on my right. There is one that involves my legs when lying down. Is it Tonic Labyrinthine Reflex (TLR)? I had to look this one up.

If the first subsided, I hope this will, too. It may be a sign that I am doing the right exercises and to keep on doing them.

The reflexes came back after my brain injury. "Reappearance may be attributed to certain neurological conditions including, but not limited to, dementia (especially in a rare set of diseases called frontotemporal degenerations), traumatic lesions, and strokes." http://en.wikipedia.org/wiki/Primitive_reflexes I would expect the reappearance of primitive reflexes if neurogenesis occurred at a low level.

Exercising shouldn't be stopped if "spasms" occur. Think of them like a sneeze. You get a tissue. You don't stop what you are doing. So let the spasm happen and keep on exercising. The same muscles exercised are usually the ones to spasm. Work right through it. Those muscles may be getting used to being used. Likewise, spasms elsewhere may be the body getting used to using those muscles. My answer would be to exercise that area, also.

A Walk In the Woods

Guided imagery, also called visualization is a technique in psychology. It was used on me for pain management when I couldn't communicate. Visualization/guided imagery has many uses. 

"Visualization, or guided imagery, involves a series of relaxation techniques followed by the visualization of detailed images, usually calm and peaceful in nature. If used for treatment, the client may visualize his/her body as healthy, strong, and free of the specific problem or condition. Sessions, conducted in groups or one-on-one, are typically 20-30 minutes and may be practiced several times a week. Guided imagery has been advocated for a number of chronic conditions, including headaches, stress, high blood pressure, and anxiety." http://www.selfgrowth.com/articles/Definition_Visualization_Imagery.html

Take a walk in the woods with your imagination, and leave the pain behind in your body....
 

This video can also be used for meditation/mindfulness.

Foot Circles

I could do this...make circles with my right foot. My ankle never froze up. It could have, but I did some strange exercises. I didn't know any PT ankle exercises, so I made one up. I would do that. I'd make exercises if I didn't know any.

With the affected leg make circles with your foot. First clockwise then counter-clockwise. Make 10 circles each way.

When I first started only my big toe moved. I did it every day, though. I could have sworn my foot was micro-moving! It probably  was. I kept it up every day and those micro-movements became something seen by the naked eye.

Why Should I Do Range of Motion?

Use your good hand to make you arm that doesn't move touch each shoulder.

The picture above is a person doing a range of motion (ROM) exercise. Range of motion exercises "help keep a person's joints flexible, even if he cannot move by himself." http://www.drugs.com/cg/passive-range-of-motion-exercises.html You want to keep the joints working, because you may need them again.

http://www.drugs.com/cg/passive-range-of-motion-exercises.html tells what you shouldn't miss.
 

The following pictures are mainly for caregivers. It is called "passive" Range of Motion when someone else does the exercise. It doesn't matter to the joint who does the moving, but that it is done.

Shoulder Range of Motion, Passive

Knee Range of Motion

(The caregiver may have trouble moving the knee. In this case, put your hand under the knee and pull up. The knee unlocks.)

You would want to do Range of Motion exercises every day if you plan on someday using the limb(s) you are currently not using. Also if you have splints or braces use them as you are told to. They help keep proper position.

 

When I was in the hospital, there was a middle-aged Hispanic woman. She probably had a stroke. She would wrap her foot around the bottom of her wheel chair. It was probably out of comfort the first times. The many times after were habit.

 

One day the Physical Therapist came by looking for candidates for a program that leads to walking. That woman was passed by. Her joints weren't working in the right way. 

The Brain Gets Better

This particular diagram also has the four lobes of the brain which may give you a clue to your own or loved one's injury.

Supposedly, I only have that area hanging down, the brainstem. I don't have any of those lobes.

I disagree with that (me not having lobes) immensely. My behavior suggests this, also. If I didn't have those lobes, I wouldn't be writing this.

In the beginning of my brain injury I didn't have use of those lobes. Here's the evidence:

I had no speech. I couldn't breath on my own all the time. (I was temporarily off the ventilator for this picture.) I couldn't type. I definitely could not write. This picture was 11 years ago from the time I am writing this.

I have speech now and breathe on my own. I also move body parts. I obviously move my left finger. That's what I am typing with. I don't have total use of those four lobes, but there's some. It's enough to get by and not be in a hospital. The brain does get better.

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UPDATE 2/17/2017
That  picture of me above is 8 months after my brain injury, but I spent my first 2 months with my eyes closed. I was deep asleep in a coma. Wounds eventually heal. The brain isn't as fast...at least mine wasn't. I wasn't looking at the camera for that picture. I wasn't looking at anything. I was staring off into space. I cropped that out of a group photo.

Here is an updated picture 14 years after the injury:  

I remain in a wheelchair, but I push to a stand now. This area is very slow. All of this was typed with my left index finger. This makes sense when you figure I pointed at everything with that finger. Speaking- that took a long time. I did years of a single word, then two, and so on. It still improves, but most understand me now. For example, I can speak to customer service now on the phone for orders that I have placed. I have hopes that other areas will improve the longer I am around.

Short-term To Long-term

Does short-term memory transfer to long-term or do the memories never come back?

Repetition over and over is good for this. What is therapy? The therapist has you do the same exercise repeatedly. Whether it is speech, physical therapy, or occupational therapy. The therapist knows different activities and exercises that do the same thing so you don't get bored.

The skill learned will either transfer to long-term memory or become a habit. Either way it is learned. Memory coming back would be faster, but instead of waiting, just start teaching through repetition. If the person gets mad at you ("We already did this!") that's good. The memory is coming back. Just ask what should be done or what happens.

Don't be discouraged if you are repeating for years. Some brain injuries take longer.