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Answers to your personal questions from someone who
cares........
DEAR PAT: I have
written to you before and was very encouraged by what you wrote back. I had a
CHI on July 30, 1998, and I'm still trying to figure things out. It's so hard
for me to be around people that I don't know for fear that I may seem "strange"
to them, etc. Even to be around people that I know, but have not seen me or
spoken to me since the accident. I feel so on edge, afraid that they are looking
for deficits, or just maybe trying to see what's different. So many people are
not at all educated about brain injuries and think that anyone with a brain
injury is instantly impaired, or has mental problems. That is true in some
cases, but definitely not all. I've been through a lot since all of this
happened, and I feel like I've come out of it wiser. I've noticed that the more
hardships people have to go through, the more levelheaded they seem to be.
Somehow, I have to get over this fear of being around new people. Half the time
I feel like I need to explain what happened, when I truly know that it's not
necessary. It's so hard to put these tense moments into words. How should I get
over this?
PAT'S RESPONSE: I don’t think I’ve met a person with brain injury who
didn’t feel this way to some extent. Figuring out what to tell people about
an injury or even whether to tell people anything at all can be difficult.
Loss of confidence and worrying about making a mistake are also common
experiences of people after a brain injury. Many people who were previously
comfortable around people become "shy" after the injury. They’re worried
about what others think and about making a mistake that will let others know
they are "weird."
Pat is glad to hear you already know that explanations aren’t necessary!
Your injury is YOUR business. You do get to decide who to tell and who not
to tell. Besides, a lot of the time the person who is most likely to notice
"deficits" is the person with the brain injury! After all, everyone
sometimes forgets things, seems distracted, is emotional, or can’t think of
the right word. Obviously if your injury is more noticeable from your
appearance, speech, or behavior, this can be more difficult to handle since
people will wonder and many will ask. But one of the things about TBI is
that the person often looks "healthy." (Although this can have drawbacks too
since others may not be as sympathetic or understanding).
As for how to get over the anxiety, there are a few things to try. One is
to practice these situations with a friend, family member or therapist. Are
there particular types of situations that make you nervous? Are there
questions you’re not sure how to answer? Is the flow of the conversation
disrupted because of confusion or a memory problem? If you can rehearse
these situations, you can build up confidence for life in the real
situation. A therapist may be able to help you analyze what aspects of
social situations make you uncomfortable and provide relaxation techniques
to deal with anxiety. Finally, participation in a support group for brain
injury may be helpful. I can guarantee if you go to a group, you will find
others dealing with similar issues. Advice and feedback from someone who has
been there is often the best thing.
 DEAR
PAT:My friend had an accident when he was 19. He was hit by a truck and his
head was split open. He was pronounced legally dead but was brought back. They
put his brain back in his head and sewed him up. They did some tests later on
and informed him he only had about 6 years to live because his brain is
deteriorating. Well, his 6 years are almost up. He never did any research or
anything to find out about this so he doesn't really know if he can be helped.
I'm sorry I don't have more info for you to go on. Do you think there is
anything medical science can do? Can you tell me more about this condition? And
if there is no hope please tell me what is going to happen so I can best be
there for him. He just told me this so there's not much time left. Please help.
PAT'S RESPONSE:Pat really can’t tell too much about your friend’s
situation from what you wrote. If your friend hasn’t kept up with follow-up
medical exams, that is clearly your first step. Without knowing anything
specific about your friend’s condition or what may have been causing
"deterioration," I really can’t speculate on whether there is anything that
can be done. The best thing you can do as his friend is to be sure he is
seen by the appropriate doctors, educate yourself about his condition so you
can advocate for his treatment, and continue to be the good friend you are.
If you can find out any more information about what is causing
deterioration, let me know and I will try to give you a more helpful
response.
DEAR
PAT: My brother sustained head injuries in a car accident on December 22
1998. Unfortunately he was very drunk at the time. It is now 7 months after his
accident and he has very slurred speech and a lot of his memory had been wiped
off. He cannot remember our sister’s wedding last summer. I am very close to my
brother and would like to stimulate him when he is at home. What sort of things
would you suggest that I do with him? Will playing scrabble and other board
games merely frustrate him or will that help? Please advise.
PAT'S RESPONSE:Certainly it will help to keep your brother busy and
playing games that involve memory or problem solving may be very helpful. If
you brother is working with rehabilitation professionals, be sure to talk to
them and get advice. They will know the details of your brother’s condition
and have a sense for his strengths and weaknesses. Most importantly, talk to
your brother. He is the only one who can tell you what does or does not
frustrate him. Remember to be patient and don’t expect him to get his memory
back right away. Depending on his injury, it’s also possible that he won’t
ever remember those past events like your sister’s wedding. Keep spending
time with him, and encourage him to follow-up regularly with his doctors and
to stick to his rehabilitation plan.
DEAR
PAT: My 8-year-old daughter was in a car accident about 1 month ago. She had
a subdural hematoma with a little bleeding on the brain, but no swelling. The
doctors tell us for only being 1 month out of the accident she is doing great. I
need to know what I need to look for in the future. Right now she is out of the
hospital and in an outpatient rehabilitation center. Can you give me any advise
on therapy for at home? Prior to this accident she was an out standing student
and we are concerned about her future in school. Any advice would be helpful.
PAT'S RESPONSE:Pat recommends having your daughter evaluated by a
neuropsychologist before the school year begins. This will serve as a
baseline so you can measure her recovery over time. A neuropsychological
evaluation can also help you to evaluate her current strengths and
weaknesses and identify any areas that might lead to academic problems. If
necessary, the neuropsychologist can help you to work with the school to
develop an individual educational plan for your daughter.
With only one month post-injury, probably the best thing you can do for
your daughter is to give her a lot of love and reassurance. Most recovery
takes place in the first six months post-injury. Don’t expect a 100%
recovery by next week or even next month. Keep her involved with
rehabilitation and make sure all of the doctors’ recommendations are
followed. In terms of specific strategies, I can’t really give any more
advice without knowing what areas you are concerned about (attention,
memory, behavior, etc.). Good luck. I’ll be hoping your daughter makes a
good recovery.
DEAR
PAT: My brother had an accident in 1985 when he was run over by a camper
type of pickup truck. As a result of this accident, when he was 18 years old, he
has lost the use of his left eye, lost most of the use of his right hand, he has
a "drop foot", and he tends to think that things happen which, in reality, do
not. He seems to feel that he must always prove himself to everyone he comes in
contact with, even stating that he tells the governor how to run the state and
that the governor takes and uses his advise. He has also become an alcoholic and
this amplifies his problems. He has been to several short and long-term programs
for alcohol abuse, which seem to help for very short periods of time. He is not
able to maintain a job, mostly because he has trouble dealing with people.
Through the state welfare program he lives on his own, but this seems to be
difficult for him at times because he does not interact with positive role
models or peers. We have a large family, all of whom try to offer support and
assistance, but he does not seek our help except when he "goes off the deep
end". During these times he admits that he needs help, until he has had company
for a while. If we offer help when he does not seek it, he becomes defensive and
says that we are trying to run his life. Last night he called for help and when
my sister, her ex-husband and I responded to his apartment, he was almost like a
child who finally got the attention he craved. We talked and together we (he was
included in the discussion) decided that he should go to the hospital to talk to
a professional about his problems. However, when we got there, he refused to
allow the counselor to help him. I realize that he is probably afraid to go to
another program because he is not entirely sure that he wants to live the rest
of his life without alcohol. He said that he would quit drinking on his own
because he "knows that he has to". We finally convinced him to try one more time
and he agreed to go to a four-day detox program (inpatient) which he will begin
on Monday. My sister and I (along with the counselor) think that the alcohol
abuse is secondary to his TBI, but we do not know of any local programs to
consider. If you have any suggestions on how we can locate programs for someone
with fourteen years of no help with a TBI or anything else we can do, we would
be very grateful.
PAT'S RESPONSE:Well, you certainly have a complicated case! So you
get an extra-long answer! Unfortunately substance abuse and traumatic brain
injury often go together. This is usually because either the person was
injured as a result of alcohol or drug use or because the person uses
alcohol or drugs to cope with post-injury changes and stress. I believe you
have chosen the correct place to start - which is the treatment of the
substance abuse. Alcohol often exacerbates or masks other problems and
without treatment for his alcohol use, any other mental health treatment
(psychotherapy, drug therapies) will have little chance at success. The
problem is that most alcohol treatment programs have very little experience
working with persons with TBI. Issues related to the brain injury such as
adjusting to a disability, behavior problems, memory problems or other
neurologically based symptoms will probably not be adequately addressed.
Another concern that your letter brings up is the quality of your
brother’s thinking. If he really believes that things happen that haven’t -
like giving advice to the governor, this sounds like he may have some
psychotic features such as delusional thinking. Even if he is just "telling
tall tales" that he knows to be false, this will clearly be problematic in
most social relationships. The problem sounds like it may go beyond just
alcohol abuse.
In other words, your brother needs three major areas addressed: 1) The
consequences of his TBI on his cognitive, emotional and behavioral skills 2)
His alcohol abuse and 3) The possibility of a thought disorder or delusional
thinking.
As I said, you have already made a good start by helping him to enroll in
an alcohol treatment facility. The next step will be to find someone who can
do a comprehensive evaluation of your brother and make treatment
recommendations. I would suggest looking for a facility such as a
university-affiliated hospital or psychiatric hospital that can provide
neuropsychological testing, as well as a psychiatric evaluation.
Neuropsychological testing can help to evaluate your brother’s cognitive and
emotional skills. The psychiatric evaluation is to determine if your brother
would benefit from medication. If you can find a facility that can do both,
this would be best since both treatment providers would be in the same place
and likely would be able to work together. If you can’t find such a place,
try to identify a neuropsychologist and psychiatrist and obtain independent
evaluations from each. I believe that it is important in complex cases to
have a comprehensive evaluation that can be used to guide treatment and
provide understanding and recommendations to the patient as well as family
members.
Finally, dealing with a family member who has serious mental health or
substance abuse problems (or both) is very hard on the family. It affects
the quality of life of everyone involved. Many family members are torn
between wanting to help their loved one and needing to manage their own busy
lives. In addition, the person needing help may not always follow through
with treatment and may seem unappreciative. It may be helpful for you to
have a family meeting to discuss options for helping your brother. Because
you’re dealing with a very complex set of issues, I believe you, your
sister, and other family members may benefit from consultation with a
psychologist or psychiatrist to develop a plan for dealing with your brother
and working on how to respond to when he has a "crisis."
DEAR
PAT: Hi, My son is currently 5 months old. He suffered hypoxic injury and
cardiac arrest at birth. It took the neonatologist 10 minutes to bring him back
to life. Needless to say, they (docs) thought he would have severe TBI. My son
has surprised us all by being very alert and appropriate on a cognitive level
for his age, however, is suffering from motor delay and possible seizures (video
EEG results are currently being reviewed). His first MRI revealed possible basal
ganglial damage; his second MRI was negative for injury. Two different MDs read
the MRI's and thus I feel this accounts for the difference in findings. My
question is what are the detailed responsibilities of the basal ganglia and what
clinical symptoms do you see with injury? (athetoid and choreic movements-please
define).
PAT'S RESPONSE:The basal ganglia are really several brain structures
including the caudate nucleus and the putamen. These structures are involved
in the control of both voluntary and autonomic movements. Damage to the
basal ganglia most often result in movement disorders, although problems
also can arise related to some aspects of attention, memory, learning, or
speech production. The specific effects of injury to the basal ganglia will
vary depending on the specific site of damage and the extent of damage.
Cerebral Palsy (a term referring to a neurologic disorder affecting body
movement and muscle coordination) can result from hypoxic or anoxic injury
to the basal ganglia during the birth process. Cerebral Palsy is not
progressive and must be distinguished from other progressive or genetic
neurological conditions. It sounds like you are seeking good medical advice.
Continue to be sure your son is followed closely by medical professionals so
they can make an early determination if your son has CP or any other motor
disorder.
Athetoid Movement - An impairment of the muscle tone (usually in
large muscle groups), causing slow, involuntary contractions of the
head, limbs, trunk, or neck.
Chorea - A condition of uncontrolled, purposeless, rapid motions
that interrupt normal movement.
DEAR
PAT:I think what you’re doing here is a wonderful thing. I'm 16 years old
and my boyfriend was in a car accident a week ago and in a coma for three days.
He has now come out of ICU and he can have visitors. I love to go see him,
because he is always so happy to see me. He had some major brain trauma, and is
acting like he is 6. I'm not mad at him at all or anything of the sort. I've
just become very impatient with this whole waiting process. I've never led onto
him that I'm impatient but I can't eat, I can't sleep, and my mind is some where
else at work. I would never think about moving on with him in this condition. We
were close before his injury, almost too close at 16 sometimes. Could you please
tell me how long it usually takes some one to recover and if will ever be the
same? If not, what are the chances he will never be the same?
PAT'S RESPONSE:If your boyfriend was in a coma for three days, he
likely had a pretty serious injury. If he had "major brain trauma" there is
a good bet his recovery process is likely to take a considerable amount of
time and rehabilitation. As for whether he will ever be "the same" - Most
people have lingering effects of a serious brain injury. Those effects can
range from permanent serious disability, to personality change, to memory
problems, or in some cases only minor difficulties. It may be that your
boyfriend will have essentially the same personality and act the same, but
have some minor problems with attention or memory. It may be that he is a
very different person both as a result of his injury and the psychological
and emotional impact of having sustained a very serious injury and a
near-death experience. Only time will tell. Your boyfriend’s doctors are
probably the best source of information about his prognosis. Don’t be shy
about asking questions.
The main thing is improvement in most cases after a serious brain injury
will occur over months, not days. Don’t expect him to "be the same"
tomorrow, next week, or even next month. Having someone you care about
seriously injured is also hard on you. You might experience feelings of
wanting to move on with your life, but feel guilty about breaking up with
someone with an injury. You might just want things to get back to "normal"
even though that might not be possible – at least for a long time. Talk to
your family and friends about how you feel. Consider talking to a counselor
– your school probably has a counselor or school psychologist you could talk
to for free (At least when school starts). Be patient, show your care and
support, and ask his doctors about his condition and prognosis.
DEAR
PAT:I am new to the site, looking for information. When I was nine (I Am 37)
I suffered a massive head trauma to the back of my skull on the left (near
center) part of my head... I was struck by a falling bolder in a Hiking
accident... It broke the skull and the bone was pressing down on the skull... It
took quite a while to get down off the mountain and I spent 3 days in a coma and
the surgeon told my parents I was going to die. He reconstructed the bone and
stitched me up and you know I woke up! Now I have never had follow up tests, but
I am a real slow reader and I can not type with out looking at the keyboard (and
then I am REAL Slow) Often getting letters out of order in words... I have never
been able to match Music Notes to finger positions, even though I can play a few
instruments by ear, and can read Music... or at least used to try... I have had
difficulty with dyslexia my whole life... I cannot remember most people’s names
or phone numbers (even the ones I call a lot.) I am an artist and very
"right-brained" I wonder if there are programs in my area that might evaluate my
damage and perhaps take me on as a patient. I am also interested in possibly
participating in Human research projects that might help re-stimulate my damaged
memory centers, or even might be interested in using my existing damage to get
around the FED limitations to working on "Healthy" tissue. I know this might
seem like a lot to ask about, but my request is sincere and I am not having much
luck connecting to anywhere.
PAT'S RESPONSE:Are there programs in your area that might evaluate
your "damage" or take you on as a patient? In terms of an evaluation, you
could certainly arrange to have neuro-imaging done to look for any
structural anomalies in the brain. You could also have a neuropsychological
evaluation to look at your cognitive strengths and weaknesses. Any
rehabilitation program working with people with brain injury should be able
to perform these services or refer you to someone who does. Ask your primary
care physician for help in finding the resources in your area. As for taking
you on as a patient – that would depend entirely on what you might need help
with.
I’m afraid I can’t give you much guidance as far as participating in
research. That would depend on what kinds of research projects might be run
at hospitals or universities near you. The fact that your injury occurred so
long ago and occurred while you were a child may also limit how many
research studies you could be included in.
DEAR
PAT:I read your response to my brother Rusty. He’s in Tierr hospital and is
doing O.L. It’s a really great hospital. I think they will help him with a lot
with different things. They’re giving him botox shots to help the spasticity in
his body it seems to be helping already with his eating. Do you know anything
about the botox shots that may help him? He tells us that he feels lonely and
lost and that he has lost at life. We asked the doctors to give him Prozac to
help with the depression. Mostly he wants and tries to be the way he was. This
is a terrible thing to be alive when you can’t function normally. He’s just a
shell of what he once was. Its so hard to look at a relative day in day out for
weeks and months hoping they come back to have some kind of normal life.
Sometimes you wonder why they’ve even lived through this. We’re thankful for his
life because some part of him is better than nothing at all, but I know that my
brother would not want to stay like he is forever. But I guess there’s no way to
tell who’s going to make it. No one should have to experience these things. The
saddest part of this whole thing is that people won’t know what kind of person
he was or what he had accomplished before this happened.
PAT'S RESPONSE:Botox is a substance produced by a bacteria that
blocks the messages between the nerve and the muscle. Interestingly, it’s
from a bacteria that in large quantities causes food poisoning! However,
this substance allows over-active muscles to relax and return to a more
normal state. You mention that your brother is just a "shell" of what he
once was – but it sounds like he’s able to communicate and still has his
same basic personality. Your brother may have limitations to what he can do,
but he sounds like he’s got the kind of love and support from his family
that people need to survive this type of tragedy and still live a meaningful
life. I’m glad you’re happier with his treatment now, and I’ll be hoping
your brother continues to make good progress.
DEAR
PAT:I'm a survivor of a six-month coma that was my third near death
situation. It's made me a 40-year-old 100% disabled veteran. In my fight for
recovery I've come up with the need to get back in shape. Now I'm trying to find
out what needs to be got in shape in my head and if there are any mental
exercises too. Any guidance will help!
PAT'S RESPONSE:Try the following webpage. This article contains a lot
of ideas for ways to "exercise" your brain! And try not to have any more
near "near death" situations! Only cats have 9 lives!
http://www.healthgate.com/healthy/man/1998/braingames/index.shtml
DEAR
PAT: My husband and I were discussing a segment we saw on 60 Minutes (within
the last year or so) about a treatment to head/brain injury (I believe closed
head trauma) administered immediately following the trauma - the doctor was from
a New York hospital I believe. If I recall correctly, the treatment was opposite
from what was traditionally administered in the first 24 or 48 hours following
the trauma; immediate reduction of the swelling was not encouraged . . . We
would like the name of the doctor and the treatment. Can you recommend how to
find out which hospital performs this treatment? Anyway, sketchy info - any help
would be appreciated.
PAT'S RESPONSE:Ummm… Well it looks like someone finally stumped
Pat!!! If there were a prize for that, you’d win it!
My only suggestion is to contact 60 minutes. Those news magazine shows
are always happy to provide you copies of tapes and transcripts, so you
might try contacting them. The contact information for 60 minutes follows:
Address:
60 Minutes
524 West 57th St.
New York, New York 10019
Phone:
(212) 975-3247
To order a transcript, call:
(800) 777-TEXT
To order a videotape, call:
(800) 848-3256
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