What We Live With

An article on the web disecting the problems of TBI.  Joseph deals with a HUGE set of symptoms listed below.  And as he grows we continue to discover new problems.  However, some things do get better as he learns his limitations. 



Patients with moderate to severe TBI have more problems with cognitive deficits than patients with mild TBI, but a history of several mild TBIs may have an additive effect, causing cognitive deficits equal to a moderate or severe injury.


Many TBI patients have sensory problems, especially problems with vision. Patients may not be able to register what they are seeing or may be slow to recognize objects. Also, TBI patients often have difficulty with hand-eye coordination. Because of this, TBI patients may be prone to bumping into or dropping objects, or may seem generally unsteady. TBI patients may have difficulty driving a car, working complex machinery, or playing sports. Other sensory deficits may include problems with hearing, smell, taste, or touch. Some TBI patients develop tinnitus, a ringing or roaring in the ears. A person with damage to the part of the brain that processes taste or smell may develop a persistent bitter taste in the mouth or perceive a persistent noxious smell. Damage to the part of the brain that controls the sense of touch may cause a TBI patient to develop persistent skin tingling, itching, or pain. Although rare, these conditions are hard to treat.

Language and communication problems are common disabilities in TBI patients. Some may experience aphasia , defined as difficulty with understanding and producing spoken and written language; others may have difficulty with the more subtle aspects of communication, such as body language and emotional, non-verbal signals.

In non-fluent aphasia , also called Broca's aphasia or motor aphasia, TBI patients often have trouble recalling words and speaking in complete sentences. They may speak in broken phrases and pause frequently. Most patients are aware of these deficits and may become extremely frustrated. Patients with fluent aphasia , also called Wernicke's aphasia or sensory aphasia, display little meaning in their speech, even though they speak in complete sentences and use correct grammar. Instead, they speak in flowing gibberish, drawing out their sentences with non-essential and invented words. Many patients with fluent aphasia are unaware that they make little sense and become angry with others for not understanding them. Patients with global aphasia have extensive damage to the portions of the brain responsible for language and often suffer severe communication disabilities.

TBI patients may have problems with spoken language if the part of the brain that controls speech muscles is damaged. In this disorder, called dysarthria , the patient can think of the appropriate language, but cannot easily speak the words because they are unable to use the muscles needed to form the words and produce the sounds. Speech is often slow, slurred, and garbled. Some may have problems with intonation or inflection, called prosodic dysfunction . An important aspect of speech, inflection conveys emotional meaning and is necessary for certain aspects of language, such as irony.

These language deficits can lead to miscommunication, confusion, and frustration for the patient as well as those interacting with him or her.

Most TBI patients have emotional or behavioral problems that fit under the broad category of psychiatric health. Family members of TBI patients often find that personality changes and behavioral problems are the most difficult disabilities to handle. Psychiatric problems that may surface include depression, apathy, anxiety, irritability, anger, paranoia, confusion, frustration, agitation, insomnia or other sleep problems, and mood swings. Problem behaviors may include aggression and violence, impulsivity, disinhibition, acting out, noncompliance, social inappropriateness, emotional outbursts, childish behavior, impaired self-control, impaired selfawareness, inability to take responsibility or accept criticism, egocentrism, inappropriate sexual activity, and alcohol or drug abuse/addiction. Some patients. personality problems may be so severe that they are diagnosed with borderline personality disorder, a psychiatric condition characterized by many of the problems mentioned above. Sometimes TBI patients suffer from developmental stagnation, meaning that they fail to mature emotionally, socially, or psychologically after the trauma. This is a serious problem for children and young adults who suffer from a TBI. Attitudes and behaviors that are appropriate for a child or teenager become inappropriate in adulthood. Many TBI patients who show psychiatric or behavioral problems can be helped with medication and psychotherapy.

Feelings

This is something I'm trying to understand and yet it is so puzzling.  When I die I pray God gives me 5 minutes to experience what Joseph feels like everyday just so I can finally understand.  He suffers from vestibular dysfunction which means he does not feel his body in space and time.  When they were evaluating him at Madonna they got him to lay flat on his back and close his eyes.  They lifted his left leg up and asked him if his leg was up or down.  He did not know.  So being that he does not sense his body and it's place in being he is always moving so that his brain can register the fact that his body IS present and accounted for.  Sounds strange, huh?  Hard for those not impaired to understand.  He even has to move in his sleep.  It seems sometimes he is having seizures just from the movement he makes at night and this is under heavy sedation.

A new discovery I made just yesterday was while cutting his finger nails.  I was holding his hand in mine and he asked me if I was cutting his nails or mine.  Same for both hands.  He could not feel me cutting his nails.  He made a discovery on his own.  He said he figured out what was making him sick on the bus.  He said it only happens when he plays video games on the bus.  A little boy was sharing his Gameboy with Joe and he would get sick from the movement of the bus while watching the movement of the video game.  I think this is more due to the sensory issue than to the vestibular issues.  Regardless, movement is something that is as necessary to Joseph as breathing is to us. 

He does not feel intense pain.  But he feels the small things and this drives him crazy.  He went outside barefoot and got a pretty bad cut on his foot.  Doesn't bother him.  I'm glad I saw it and cleaned it.  But if he gets a little scratch it will drive him nuts.  The doctors at Madonna say this is sensory issues.  He was complaining of itching skin.  This was mid-winter so everyone in the state of Nebraska is itching.  But it was like a plague to him.  So they wanted me to take him to the doctor not only to document but to make sure he was not having an allergic reaction to something.  No, the itching was fine BUT he had a HORRIBLE ear infection.  Doc was surprised he had not complained.  Joseph sat there saying it didn't hurt.  He had a busted eardrum but it didn't hurt.  All he cared about was the itching!  :-)  Life with Joseph.......

His teachers at school, God love them, have made changes to the classroom to help him deal with so many issues.  He was hiding under his desk to do his work because he would say the lights were too bright.  They have now put lamps in the classroom and keep the lights turned down. 

Easter

It was amazing how well Joseph did this past Easter weekend.  We had a lot of company in and out of the home and yet he stayed pretty focused.  There were just the typical issues with him being too loud, hyper, or complaining but nothing huge.  He slept through Good Friday services.  We skipped Easter vigil this year as we have learned there are limitations that we just have to follow.  He did very well Easter Sunday at mass.  I kept thinking it was like a little Easter miracle.  But then....the normal routine kicked in and he was out of it. 

It dawned on me half way into this past week of why this was happening.  He thrives on novelty for short periods of time.  It is the readjusting to schedules that throw him off.  It's the back and forth.  So we have spent this whole week trying to get him back on schedule.  There has been a huge increase of smelling and licking his hands.  His teachers at school have started to give him things to chew on at school.   They say this has helped.  We are getting closer to the home assessment.  We will do it on a pretty and warm Saturday in the near future.  I'm trying to get him into a summer program that is a daily class but I'm not getting my phone calls returned.  I will keep trying.  I think he will need to stay very busy during the summer months.