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Answers to your personal questions from someone who
cares........
DEAR PAT: Do you
know of any resources available for obtaining a specialized wheelchair for a
low-level brain injured patient with no access to financial resources?
PAT'S RESPONSE: Finding money for specialized equipment is often very
difficult. Wheelchairs often range from around $1000 for a basic model to
more than $10,000 for more specialized power models. There are a few options
for financial assistance that you might explore. First, carefully check the
patient’s insurance policy. Some policies pay for necessary medical
equipment such as wheelchairs or other specialized healthcare equipment.
Contact your state’s Department of Rehabilitation Services to find out if
your state offers financial assistance for such situations. If that is not
an option - churches, community groups (Rotary or Kiwanis clubs) or other
charities may be willing to help you raise money. Often, people are willing
to help if you just ask! If other people have suggestions that Pat hasn’t
thought of, send your ideas!
DEAR PAT:I am an avid reader of your articles since my
brother became a survivor 7 months ago. He had water around his heart
(pericardial sac) that was misdiagnosed as pneumonia. He went into cardiac
arrest at the hospital and the residents did open heart massage for 20 minutes.
He is now totally dependent on his wife who also cares for their two small
children. I am there daily and on the Internet nightly, looking for all
information. My question is - Where can I look for similar cases as ours to sue
the hospital and doctors? The expenses are enormous to keep him at home. This is
our only recourse, we are involved with the Mayo Clinic now. That is a blessing,
but now my family is considering bankruptcy. My brother is 51 years old. We
celebrated his birthday in ICU while he was on life support. Life’s not always
fair, but we need to find out if others had this happen and what is our legal
recourse. I did go to an attorney who is waiting for records from the hospital.
I had to give him $5,000 just to review the case, non-refundable. I have learned
that what needs to be done, I must look into myself. Where can I go to review
other lawsuits?
PAT'S RESPONSE:I’m very sorry for this tragedy in your family. Your
story shows how brain injury and illness affect entire families, not just
the patient. As my readers know, cardiac arrest can result in brain damage
from lack of oxygen to the brain – and this sounds like the case with your
brother.
As for your question about malpractice – it’s hard to comment on the
specifics of your situation. Pat is not a lawyer or a cardiac or respiratory
specialist. I do know that fluid in the pericardial sac is often the result
of viral or bacterial infections such as pneumonia. Pat isn’t qualified to
assess whether your brother’s treatment conformed to standards of practice
or if the physicians failed to identify the pericardial fluid when they
should have… Consultation with a specialist in cardiac or respiratory
illness may provide some answers for you.
There are some other resources on the Internet that you have probably
located with your Internet savvy! There are many legal and medical websites
that may better address your malpractice questions. I am concerned that you
gave an attorney $5000 of non-refundable money just to "review" the case.
Many attorneys offer free initial consultations and free legal aid is
available for people who do not have the ability to pay attorneys’ fees. It
is important to find out if you have a good case before you spend large
amounts of money – especially if your family is having financial problems.
It is important to weigh the financial risks of bringing a lawsuit against
the potential benefits of a settlement or successful suit. I hope that you
will find justice and that your family will successfully adjust to this
terrible tragedy.
DEAR
PAT:I am a long-term care Administrator. Our facility is attempting to deal
with a 74-year-old woman with a brain tumor, which is growing and causing
aggressive behavior towards other residents. I am unable to find a facility in
our area of Southern Wisconsin that would be appropriate for discharge. Where
can I access a list of such facilities?
PAT'S RESPONSE:It is often very difficult to find placement for
violent or aggressive patients. Such patients require extra resources, are
stressful for staff, and can create dangers for both staff and other
patients. Other facilities that do accept aggressive patients may limit the
number they accept due to staffing and other concerns. In your case, it
sounds like your facility is in a difficult predicament with this woman. I
would make a couple of suggestions in the short-term. First, work closely
with her family and physicians (consider a psychiatric consult) to identify
medications that may help to decrease aggressive behavior and to make this
woman comfortable. Second, be sure your staff is trained in the proper way
to restrain aggressive elderly patients. Consider consulting a psychologist
to develop a behavior modification plan. Even with cognitive impairments,
many people are still responsive to behavior modification techniques.
Finally, try to identify when this woman is becoming agitated and develop a
plan for dealing with her aggressive behavior that protects her, your other
patients, and your staff. It sounds like a tall order – and it is. (Probably
why you’re having such a hard time finding an alternative placement). For
your facility, it sounds like it’s only a short-term solution until you can
find a more appropriate placement.
I don’t know if I can be of much help to you in Wisconsin. About all I
can suggest is that if you haven’t already done so, you might want to
contact the Wisconsin Department of Health and Family Services. On their
website, they provide contact information for people who should be able to
help you identify good nursing home or mental health facilities for this
woman. You may also want to look into facilities specializing in
Alzheimer’s, as they often have to deal with unusual behaviors.
Many rehabilitation professionals have been concerned for years about a
lack of resources of aggressive patients – and too many end up in
inappropriate placements. Unfortunately, the problems of placing
neurologically impaired, aggressive, elderly patients are only likely to
increase as the population ages.
DEAR
PAT: I am looking for any information on help for a person with traumatic
brain injury who has aggressive, violent episodes. The individual is now 39, was
6 when accident occurred. He is falling through the system, difficult placement
due to behaviors. But behaviors are not all the time. There is a great person
trapped. Would like to be able to offer parents hope. Also are there any support
groups for the parents of traumatic brain injury?
PAT'S RESPONSE:If you read the question right before yours, you know
that you are not alone in experiencing problems finding an appropriate
placement for persons whose neurological problems lead to aggressive or
violent behavior. Unfortunately for this gentleman, he’s very young and
appropriate placements may be even harder to find. There are many persons
with brain injury in the criminal justice system because of their inability
to control their impulses. If he is a danger to others, it is extremely
important that he follow the treatment recommendations of his doctors very
closely. A few suggestions –
- Be sure he is properly medicated and closely followed by a
psychiatrist who has expertise in working with persons with brain
injury and/or managing violent behavior.
- Talk to a psychologist or other behavior management expert about
what the family can do to set up a good environment for this man.
Encourage him to participate in psychotherapy with a
neuropsychologist or other therapist specializing in brain injury
rehabilitation. Support groups are also helpful for many persons
with brain injury – it’s often easier to talk to others who have
"been through it."
- Try to identify what triggers the "violent episodes." Is he
having seizures that contribute? Do "episodes" occur when he is
overwhelmed, stressed, or fatigued? Does alcohol and/or drug use
contribute? Identifying situations likely to bring on aggressive
behavior can help to avoid the situation in the first place.
- Consider if there are emotional or psychological factors that
contribute. Frustration, depression, or anxiety can contribute to
angry and aggressive feelings.
Although persons with brain injury often have more difficulty
controlling violent or aggressive impulses, this doesn’t mean it’s
impossible. It also does not excuse violence or hurting others. If the
person knows right from wrong and is cognizant of the problem, it is his
responsibility to follow treatment guidelines, accept responsibility for
his actions, and work to modify his own behavior or avoid situations
likely to cause "outbursts."
Finally, yes there are support groups for family members of persons
with traumatic brain injury. Many patient groups also welcome family
members. Contact your state’s Brain Injury Association chapter or visit
http://www.biausa.org for
more information – including contact information for the state chapters.
DEAR PAT: My daughter suffered a severe closed head
injury and is 17 months post injury. Her short-term memory is impacted greatly.
She has an IEP and is in the normal classroom with learning support. However 2
classes are very auditory and try as we may the instructors will not make the
courses visual. Are there resources available to make subjects visual? How can
we access them?
PAT'S RESPONSE:It would be helpful to know which two subjects you are
concerned about. Some classes are easier to teach "visually" than others
are. It would also be helpful to know if your daughter’s reading skills are
impaired, or if her limitations only extend to information she hears. If
your daughter’s difficulties are limited to problems learning from a lecture
format, it will be important to supplement her learning with information
presented in class with outside readings as well as information presented
visually in the form of graphs, charts, or diagrams.
Your daughter may also benefit from tape recording lectures for later
review at home (you may be able to help supplement these lectures with
visual information). Hands-on learning, demonstrations or watching
educational videos/documentaries may also be helpful. Finally, many subjects
can be supplemented with educational software that provide multi-media
learning opportunities.
DEAR
PAT: My father was recently in an automobile accident where he suffered
brain trauma, I have many concerns. He is very lucky to have lived because his
BAL was three times the legal limit. From this accident, he suffered three skull
fractures and two hematomas, one on each side of the brain. He was never in a
comatose state. It is 2 1/2 weeks later and he talking to people and is even
remembering things from the past. He now has a very short attention span and
occasionally has childish spells. I am wondering what type of behavior is
typical for people who have suffered basilar and occipital fractures, and what
role his hematomas may play a part in his recovery. I must also add that there
have been a series of CT and the hematomas have gone down, the doctors expect
them to take care of themselves, although later it may be necessary to drain
them. Do you have any advice? Thank you!
PAT'S RESPONSE:Hematomas are blood clotting in tissue. I’m sure your
father’s physicians will monitor these closely. As you noted, surgery is
sometimes required to remove the clots. As for "typical behavior," it is
very difficulty to predict brain injury outcome from skull fractures, or
points of impact. The reason is that in high-speed traumas such as motor
vehicle accidents, the brain can sustain multiple impacts as the person (and
the brain) bounces around during accident. The brain often rebounds inside
the skull creating injuries opposite the point of impact. In addition,
diffuse injuries can occur because of rotational forces. Alcohol use at the
time of injury further complicates the picture. Research has shown the
persons who are intoxicated at the time of a brain injury are likely to have
more problematic post-injury symptoms. Hopefully your father will beat the
odds in this regard. To sum up, behavior is just very difficult to predict
based on a CT or a MRI. As frustrating as it may be, there usually isn’t
much to do, but "wait and see."
Probably the best advice is to be patient and remember that recovery from
brain injury is a long-term process. You will have a better sense for how
your father’s recovery is going after about six to twelve months. It is
important that he follow all his doctors' treatment recommendations and that
he refrain from alcohol use (which limits recovery). You may also want to
consider having a neuropsychological examination done to establish a
baseline against which you can measure future recovery.
DEAR
PAT:I’m trying to find information, research, and written information on
recreational activities or after-school activities for teens with brain injury.
That is, not focused strictly on academics. There is life after school, and it
doesn't have to be filled up with more and more educational tutoring/homework.
My eyes are getting sore from finding so little on this subject, aside from a
couple of general articles. Any bright ideas?
PAT'S RESPONSE:The answer to this really depends on how severe the
child’s injury is and what the symptoms are. In most cases, persons with
mild to moderate brain injury deficits can participate in social or
recreational activities with non-injured people. Activities such as scouts,
church groups, or art classes will provide opportunities for socializing and
community participation regardless of ability level. In addition, the child
may have talents that are unaffected by injury – such as music that provide
enjoyable outlets. Many teens enjoy finding activities where they are not
necessarily labeled as "brain injured." Obviously, contact sports such as
football, basketball, or soccer should only be considered with a doctor’s
permission due to the risk of re-injury. If the person’s injury was serious
it may be better to avoid such sports entirely.
If the child has more severe symptoms or has behavior problems, you may
want to explore some other alternatives. Hospitals that serve children and
adolescents may have support groups for teens with brain injury – and some
of these may also have social and recreational activities. There may be
groups for teens with learning disabilities (or physical disabilities).
Remember, in many cases, brain injury is a kind of acquired learning
disability and many activities, groups, and interventions may be useful with
children with brain injuries.
DEAR
PAT:Dear Pat: I am a graduate student who suffered a mild TBI from a sports
concussion 2.5 years ago. I have concentration deficits and experience problems
reading and writing at the level of a graduate student. I am determined to
finish my degree but I am behind schedule and meeting opposition from my advisor
and graduate department. A neuropsychologist told me there is nothing I can do
except spend extra time to get my work done. Are there rehab programs that
address deficits in high functioning individuals? I would very much like to find
solutions to my problems.
PAT'S RESPONSE: Most rehabilitation programs are more focused on
helping people with more severe deficits. As a graduate student, you’re sort
of doing the equivalent of professional sports for the brain. It requires
very high level cognitive skills such as attention, communication, and
memory. Knowing your strengths and weaknesses is very important. Attention
problems can often be compensated for with a number of behavior
interventions, which you have probably already discussed with your
neuropsychologist. Reading and writing will depend on what the specific
problems are. For example, if it takes you longer to write due to motor
skills, you might consider voice recognition word processing software. On
the other hand, if the issues are reading comprehension and/or organization
of writing, your neuropsychologist may be right. It may just take more time
and effort and/or some tutoring to compensate.
You may also qualify for some accommodations from your graduate school
under the Americans with Disabilities Act. For example, you might get
extended time for test taking, be able to test in isolation, or have a tutor
provided. If you think something like this might be helpful, talk to your
school’s student disabilities department about this.
There are also two very important questions you will need to ask yourself
– and they’re very hard questions -
- Are going to be able to function at a high level in your
chosen field? For example, if you are going into a field that
requires a great deal of reading and writing at a high level,
you need to ask yourself if you can compensate. Can you learn to
compensate for your disability and function as well as your
peers? Are compensations you receive in school (extra time,
tutoring) reasonable for an employer to provide in the
workplace? You also need to consider the cost of making a
mistake due to inattention or misreading something. In some
fields, the mistakes can be corrected with minimal cost (other
than perhaps embarrassment) but in some fields (such as health
care) mistakes can cause significant harm.
- Will it be worth the extra effort and energy needed to
compensate for your injury related deficits? For example, if it
takes you extra time to compensate for your deficits, you need
to be prepared to spend that extra time to get the job done. In
other words, what might take 40 hours per week for a non-injured
person may take 50 hours for you. You might be able to do the
exact same job, but if you have to read and write as part of
your job, it may take you longer to do the same amount of work.
If you believe you can do it and you’re willing to put in the effort and
energy, then the best thing you can do is to devote the time and energy
needed to complete your degree. Continue working with your neuropsychologist
and continue to explore options and compensatory strategies. If attention
problems are significant concern, talk with your physician about the risks
and benefits of a medication trial. Another option to talk to your
neuropsychologist about is whether taking some time off might be helpful.
Sometimes stress can limit recovery from an injury, and perhaps you would
benefit from a year away from school to allow further recovery and to assess
your options.
If you decide the answer to either of the two questions is "no", then you
need to consider other career options. Talk with your neuropsychologist
about your strengths and consider career counseling to assess job options
that play to your strengths!
You sound like a hard-working and dedicated person and I’m sure there is
a lot of success in your future!
DEAR
PAT: It seems like most of your questions are related to severe head
injuries. What about the minor ones? I’ve had a headache daily now for over 4
months since being injured. Any advice?
PAT'S RESPONSE: If I had a daily headache for four months, I wouldn’t
call that minor! First, you need to talk to your physicians about your
headache. They may be able to recommend some medications to cope with the
headache. You may also want to consider behavioral techniques such as
relaxation training or biofeedback to help you cope with pain. Other things
I would advise include avoidance of high stress situations and getting
plenty of sleep each night. Stress and insufficient sleep can both limit
recovery after a brain injury. Consult with a physiatrist, neuropsychologist
or pain management specialist (or all three) to get a better sense for your
specific prognosis!
DEAR
PAT: My husband fell 100+ feet in a plane crash in April 1999. He sustained
a severe brain injury and is still struggling with attention and memory. Also,
within the past three weeks he has recurring smells of cigarette smoke when no
one is smoking. He is under the care of several doctors, but wonder if you have
any info on the smoking smell. Thank you – his wife.
PAT'S RESPONSE:Pat certainly hasn’t encountered this symptom before!
It’s probably impossible to know for sure what’s causing it. It’s possible
that he is experiencing a mild hallucination (probably on a par with hearing
someone call your name when no one is there). It could also be that his
injury has triggered an association with the part of his brain responsible
for storing "cigarette smell" in his memory. Perhaps there is an odor in the
environment that his nose detects, but his brain mislabels as "cigarette
smoke." Sometimes patient who experience seizures smell an odor before a
seizure (although you don’t mention seizures). Pat’s open to other
explanations if someone can suggest one.
This problem could actually be serious if your husband believes there is
a fire in the home – or conversely if he fails to respond to a smell of
smoke because he believes it is just "in his head." You may want to check
the smoke detectors in your home to be sure they are working – just in case!
Unfortunately, I’m unaware of any specific treatments other than to wait and
see if this is a temporary symptom.
DEAR
PAT: I was very impressed with this site. I found it helpful and informative
as well as emotional. Thanks a lot. Here is my question: My sister suffered a
TBI almost a year ago. She has had a great recovery, so far. She is now back to
work and functioning quite well. Now she is having a problem admitting that the
TBI has had that much of an effect on her life. She is in denial, she is a much
different person because of the injury but won't admit it. It has been really
hard all of the family. I have suggested therapy but she doesn't see that there
is a problem. I have come to terms with the fact that I can't have my sister
"back" the way she once was but I want to establish a new relationship her but I
don't know how. If you can help – thanks so much. If not -thanks for listening.
PAT'S RESPONSE:Thank you for your kind comments. Pat just loves
compliments. Onto your question! After a brain injury, people often seem
"different" to family and friends. This can be due both to effects of the
injury on personality and behavior as well as the emotional impact of
surviving a traumatic event. It sounds like in many ways your sister has
been a remarkable success story if she is back at work and functioning well.
Because I’m not sure what the "differences" are, it’s hard to offer any
concrete advice. One thing I can tell you is that many survivors of brain
injury often become tired of having people tell them they are "different"
(even if they are different). If your sister is functioning well, it may be
that you and your family need to consider if there are ways you can accept
her differences in a positive way. For example, if "differences" mean a
different likes and dislikes, different attitudes, or different ways of
doing things, it may just take time to "get used to" your "new" sister. On
the other hand, if "differences" include irritable mood, low frustration
tolerance, or angry and aggressive behavior, you can certainly talk to your
sister about this and encourage her to seek counseling (or even consider
family counseling with your sister). However, you must remember that she is
entitled to make decisions about her life – including decisions about
whether to seek help or not. The only exception to this would be if she is
danger to herself or others (then you can ask a judge to intervene). If her
behavior makes it uncomfortable for you or other family members to be around
her, you may have to think about limiting your interactions to only include
those that are brief and pleasant.
Somehow, I’ll bet a sister as concerned and devoted as you will find a
way to work things out!
DEAR
PAT:I am an instructional aide at an elementary school. I have just been
assigned to work with a second grader who is near drowning victim. I don't know
a lot about the child other than the parent's refusal to allow him special
services from school because that would label him special ed. At this point, the
teachers and school are trying to deal with the parents and in the meantime I
have this sweet boy for two 30 min. sessions a week. I need some kind of
direction as to how to work with him. At times he is somewhat alert and he knows
some letter sounds but seems to be unable to put letter sounds and shapes
together to form a word. At other times he is drifting and unfocused. His eyes
rolling back in his head. He seems to have short or very little retention of
what we are working on. He is on a modified curriculum. Help! What can I do for
this child with such short and limited time frames?
PAT'S RESPONSE:I wish every child could have educators who were as
dedicated and passionate! Unfortunately, it will be very difficult – if not
impossible – to get this child the help he needs if the parents are
uncooperative. It sounds like this child needs to have a comprehensive
neuropsychological examination to assess his strengths and weaknesses. It is
difficult to develop an appropriate and realistic educational plan without
knowing a child’s capabilities. If he is in 2nd grade and only
knows "some letter sounds" and is yet to form words – he’s clearly very
delayed. Without knowing the extent of brain damage or his level of skill,
it’s impossible to know what approach will work best or even if he will be
capable of learning in a "mainstream" academic environment. In the meantime,
you may want to consult with the special educational coordinator at your
school (if you haven’t already). You may want to try to adapt multi-modal
learning strategies and other techniques used to teach learning disabled
students. However, even with that, two 30 minute sessions a week aren’t very
much for a child with such significant learning delays.
I certainly understand the parents’ desire not to have their child
"labeled." Emotionally, parents often have difficulty adjusting to the fact
that a previously "normal" child now has impairments of disabilities as the
result of an injury. It is certainly important for school personnel to be
understanding and sympathetic to the parents. However, I wonder if the
parents are aware of the child’s deficits in the classroom. I don’t know
what kind of relationship the parents have with the school at this point,
but it might be helpful to invite the parents to observe the class. If this
child is noticeably far behind the other children, seeing it with their own
eyes may help them decide something must be done.
Talking with the parents about all the options should be considered. For
example, if they are concerned about "labeling" the child as "learning
disabled" because they believe he will eventually recover – perhaps they
could be provided with a label such as "Other Health Impaired." It may also
help to explain the children who receive services are periodically
re-evaluated and if he no longer shows learning problems at a future date,
services could be stopped and he would no longer have a "special education"
classification. Finally, the parents could be encouraged to seek an
independent neuropsychological evaluation (it may be paid for by their
insurance). This would provide them with confidential feedback about their
child and his needs. Although the school could not receive a copy of the
report without the parents’ consent – at least they could hear from a
neutral expert how their child is doing and what his educational needs are.
Maybe after hearing the facts, they would change their minds about placement
options.
On the other hand, if the parents continue to resist services, tension
between the parents and school may increase. Although there are options the
school can pursue at that point to force the issue, it’s beneficial for
everyone involved (especially the child) for this to be resolved
cooperatively.
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