About Brain Injury

Acquired Brain Injury (ABI) Program

 About Brain Injury

Table of contents

Page
Introduction ............................................................................................ 1

How does the brain work? .................................................................... 1

Part 1 – What is an Acquired Brain Injury (ABI) and

Traumatic Brain Injury (TBI)? .................................................. 3

Part 2 – Rehabilitation ........................................................................... 11

Part 3 – Physical changes ..................................................................... 19

Part 4 – Changes in thinking, behaviour and

mood after a brain injury ......................................................... 35

Part 5 – Towards the future ................................................................... 45

 About Brain Injury

Introduction

Brain injury is the leading cause of disability in children and adults.

All brain injuries are different. You may have problems and
symptoms that can be very similar but also very different from that
of another person. The consequences of a brain injury affect you
and also your family and your relationships.

This booklet was created to help you and

those close to you understand brain injury,
what you can expect and what you can do.

How does the brain work?

The brain is the body’s control centre. The brain controls our:

 movements

 thoughts

 feelings

 senses: sight, hearing, touch, taste and smell

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Each part of the brain has a different job or function.

Parietal lobe Frontal lobe

 perception  control of attention,
 integrating senses behaviour and
 sensations emotions
 recognition of  judgment
objects by touch  problem solving
 perception of space  movement

Occipital lobe Temporal lobe

 vision  memory
 hearing
 understanding
 language

Cerebellum
 coordination Brain stem
 maintaining balance  maintaining
breathing and
heart beat
 swallowing
 sleeping and
wakefulness

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 About Brain Injury

Part 1:

What is an Acquired Brain Injury (ABI) and

Traumatic Brain Injury (TBI)?

In this part you will learn:

 the consequences or symptoms of a brain injury

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 About Brain Injury

An Acquired Brain Injury (ABI) is damage to the brain that happens

after a person is born. This damage can result from many causes.
The two types of causes are traumatic and non-traumatic:

1. Traumatic causes or a Traumatic Brain Injury (TBI), can result

from physical trauma to the brain. This trauma can be caused by
an injury from playing sports, falling, an assault, a motor vehicle
accident or neurosurgery.

2. Non-traumatic causes include a stroke, brain tumors, infections

in the brain, poisoning, brain swelling, loss of oxygen to the
brain, heart attack or substance abuse. They do not
involve conditions that are neurodegenerative such as
dementias.

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What are the consequences or symptoms?

The consequences or symptoms of a brain injury are complex and
can be very different between people. People with brain injuries can
have different consequences because the brain controls almost
every aspect of our lives such as our:

 physical skills and abilities

 thinking skills
 social skills and knowledge
 emotions
 behaviour and desires

An injury can affect specific areas of the brain or can affect many
different areas. This is why the symptoms or consequences can be
so different between different people.

Some symptoms or consequences will show up right away while

others may develop over a few days.

The consequences of an ABI often require making a major life

adjustment around the person's new circumstances. Making that
adjustment is a critical factor in recovery and rehabilitation.
While the outcome of a given injury depends largely upon the
nature and severity of the injury itself, the right treatment plays a
vital role in determining the level of recovery.

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 About Brain Injury

Things to consider:

The severity of the injury

Brain traumas are classified as

concussion**, moderate or severe injuries.
These levels describe the amount of trauma that has
occurred to the brain. Some of the factors that affect the level
of severity include:

 The length of post traumatic amnesia (PTA) or the amount

of time the person is conscious but is not forming or making
new memories.

 The level of consciousness. The Glasgow Coma Scale (GCS)

measures level of consciousness on a 15 point scale (3 being
lowest level and 15 is fully conscious).

 Neuroimaging results. CT scan or MRI scans are usually

used to evaluate if there are larger areas of local damage
or injury. For injuries to be seen on such scans they are
usually larger in nature. Many injuries do not show up on scans.

** For more information on concussion, refer to the HHS patient

education handout “Head injury and concussion”. If you would l like
a copy of this handout, ask your health care provider or go to the
HHS patient education library at www.hhsc.ca/pedl and search for
“brain injury”.

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 About Brain Injury

What the injury involved

A brain injury can involve:

 bruising or swelling of tissue

 stretching or tearing of nerve fibers that connect cells
 breaking or tearing of blood vessels
 changes in brain chemistry can cause toxic chemicals to be
released to the brain cells.
 a lack of oxygen that causes brain cells and nerves to die

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 About Brain Injury

Part 2: Rehabilitation

In this part you will learn:

 about rehabilitation

 who is on the rehabilitation team

 your role in rehabilitation

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 About Brain Injury

What is rehabilitation?
The purpose of rehabilitation is to help you understand your
injury and learn skills and strategies to function as independently
as possible in your home, community, work place or in all of
these areas. This may include:

 relearning old skills

 learning new skills
 participating in new activities

Rehabilitation after a brain injury occurs in hospital and in the

community. The type and length of rehabilitation will depend on
your needs, goals and your progress. Rehabilitation is an ongoing
process where you take part in activities that you find important.
This can be done within a specialized rehabilitation program,
a community based program or in the context of your daily
life activities.

What is a Specialized Rehabilitation Program?

A Specialized Rehabilitation Program typically involves a
specialized team of health care providers who will design a
program based on your individual needs. Different professionals
may be involved for different people and at different times because
each person with a brain injury has unique needs.

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Your health care team can involve these members:

Team Member How They Help

Physiatrist  monitors your health

(Medical Doctor in
Rehabilitation)  prescribes and reviews medications and
procedures
 orders tests and treatments
Neurologist  specializes in headache management and
monitors your health
 prescribes and reviews medication and
procedures
 orders tests and treatments
Registered Nurse  cares for your medical and nursing needs
and Registered
Practical Nurse  gives medications and teaches you or your
family to manage medications
Physiotherapist  helps you regain strength and range of motion
in joints and muscles
 helps the person with walking, balance, fitness,
strength and coordination

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 About Brain Injury

Team Member How They Help

Occupational  assesses and recommends ways that help with

Therapist
daily tasks such as eating, dressing and using
the bathroom
 assesses equipment needs
 completes home assessments, including
household chores
 assess skills needed to return to work
Social Worker  helps you and your family cope with changes
in your lives
 provides emotional support and resource
counseling and referral
Speech-Language  helps with spoken and written communication
Therapist
problems
 assesses and makes recommendations for
managing swallowing problems if needed
Rehabilitation  helps you relearn and practice skills with
Therapist
everyday activities such as dressing, walking,
doing chores
 helps you explore leisure activities at home or in
the community
 works with registered health care providers to
determine how best to carry out these activities

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 About Brain Injury

Team Member How They Help

Registered  assesses your nutritional needs and provides a

Dietitian/
specific diet if needed
Dietetic Assistant
 provides nutritional education to you and
your family
Therapeutic  assesses interests and introduces new activities
Recreationist
 provides links to recreational/leisure resources
in the community
Neuropsychologist  assesses changes in thinking and emotion after
brain injury and may provide counseling.
 explains the results and meaning of
neuropsychological tests — which assess
thinking and emotions
Psychometrist  works with the Neuropsychologist
 does a variety of tests to assess how the person
thinks and feels
Behavioural  assesses and treats changes in behaviour
Psychologist
 guides team members to manage behaviour
problems
Behaviour  works with Behavioural Psychologist to
Therapist
implement specific ways to manage behaviour
problems

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 About Brain Injury

Team Member How They Help

Neuropsychiatrist  assesses problems in thinking, mood and

behaviour
 prescribes medication to help manage
symptoms
Respiratory  provides breathing assessments, oxygen
Therapist
therapy and treatments to help with breathing
problems

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 About Brain Injury

Your role in rehabilitation

Your team will monitor your progress on a regular basis. They will
also modify the activities as needed.

The team will provide you and those close to you

with information and support to keep up-to-date.
Your family will be encouraged to observe and
participate in some of your therapy sessions.
A notebook is helpful to keep track of information
and your questions and concerns for the team.

When you are ready to be discharged by your team, they will work
closely with you and those close to you to prepare for discharge.
Referrals may be made to other professionals, programs, services,
or community-based activities.

The focus of recovery is about regaining as much as possible that

was lost, but also about learning to accept and deal with the
changes that have occurred.

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About Brain Injury

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 About Brain Injury

Part 3: Physical changes

In this part you will learn about some of the physical changes that
could happen after a brain injury:

 movement  weight

 joints  swallowing

 pain  bladder control

 senses  bowel control

 communication  skin

 seizures  fatigue

 breathing  drugs and alcohol

 arousal

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 About Brain Injury

Movement
A change in the ability to move is one of the most common issues
after a brain injury. Physical changes can affect the way that you
are able to move and carry out daily routines. You may have one
or more of these changes:

 paralysis or weakness causing decreased use of one or both

hands and/or legs
 poor balance
 low endurance
 difficulty planning movements
 poor coordination
 muscle stiffness, tension or trembling
 unable to control the trunk of your body

Your health care team will work with you to determine the treatment
to keep you safe and allow your independence. This may include:

 therapy (exercises and activities)

 use of special equipment such as walkers or splints
 medications
 surgery

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Joints
Changes to your joints can occur as a result of your brain injury.
Your health care team will recommend exercises, medications and
other treatments to improve your function.

Heterotrophic Ossification

As a result of chemical changes to the brain, extra bone may form

around the joints. Heterotrophic ossification may be extremely
painful and restrict movement. Treatment includes exercise.
Medications may also be helpful.

Subluxation

As a result of damage to the message pathways to the muscles

around the shoulder, the ligaments and tendons may overstretch
due to the weight of the arm. This pulls the arm out of the
shoulder joint. This is called subluxation. It may be very painful
and restrict movement.

Treatment may include use of pillows, slings and lap trays to avoid
more damage. Heat, ice, gentle movement or medications may
help with the pain.

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Contractures

Due to changes in brain activity, contractures could also occur.

A contracture is when muscles or tendons become
permanently shortened. This causes a limb to become deformed.

Splints and ongoing therapy may help. In some cases contractures

may require surgery, casting or both.

Pain
Pain and headaches can result after a brain injury. This can make it
hard to concentrate or remember and take part in daily activities.
Pain can also affect sleep and mood.

Your health care team can help you learn how to manage your pain
or recommend medications that may reduce your pain.

Senses
Any of the senses such as, hearing, vision, taste, smell and touch,
may change after an injury. This may be the result of damage to:

 the area of the brain that controls that sense

 the sensory organ itself, such as damage to the ear
 the nerve carrying the messages from the sensory organ
to the brain

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 About Brain Injury

You may have any of these sensory problems:

 over-sensitivity to touch — this may result in withdrawing,

crying, yelling or striking out when touched
 inability to feel pain, touch, hot or cold
 inability to see certain objects in view
 loss of vision, double or blurry vision, sensitivity to light
 lack of attention to one side of the body or room — this is
called neglect
 changes in sense of smell or taste
 ringing in the ears, intolerance to noise
 sensitivity to movement or lack of awareness of movement
 inability to understand where limbs are located in relation to
the body and surrounding space

Your health care team will provide you with rehabilitation

activities to help you become more aware of any changes
and strategies to help.


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 About Brain Injury

Communication
You may have problems communicating after a brain injury.
Communication changes may result depending on the part of
your brain that was affected.

Some speech problems involve:

 making sounds
 pronouncing words

Some language problems involve:

 expressing thoughts
 finding the right words
 understanding what people say
 difficulty reading and writing

Your health care team will help you understand and express
yourself. Speech therapists are trained to assess and treat
communication difficulties.

They will recommend therapy and strategies to help you

communicate. There are some tests that may be recommended to
help the team understand the changes that you have experienced.

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 About Brain Injury

Seizures
Seizures can occur after a brain injury. Seizures are caused by
disturbances in the electrical activity of the brain. During a seizure,
the brain’s ability to control normal movement is mixed up which
can cause temporary changes. There are different types of
seizures. You may not know that a seizure has occurred. It is
important for your family and health care team to be able to
recognize a seizure. Some people have warning signs that a
seizure may happen including dizziness, nausea, vision changes,
headaches, or feeling anxious.

Signs that you may be having a seizure include:

 involuntary movement such as spasms, jerking of arms,

legs and/or head
 loss of bowel and bladder control
 changes in normal eye movement
 noises such as grunting or groaning
 unresponsiveness
 drooling
 changes in sensation

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Seizures may occur early after the injury, or not until months or
years later. They can be triggered by:

 lack of sleep
 stress
 high fever or infection
 very high or low blood sugar levels
 drinking alcohol
 medications

If a person has had seizures, activities such as driving a car or

operating heavy equipment is unsafe. Your driver’s license may be
suspended until seizures are controlled.

Most seizures can be prevented or controlled by medication.

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 About Brain Injury

Breathing
Certain brain injuries may impact your ability to breathe on
your own. You may need a breathing tube put into your trachea,
called a tracheostomy, to help you breathe easier. If a
tracheostomy is recommended for you, your doctor, nurses
and respiratory therapist will work closely with you to improve
your breathing. If you are well enough to breathe on your own,
the tracheostomy will be removed.

Arousal
Arousal is your ability to be alert. Depending upon your injury,
your level of arousal can vary, especially in the first stages of
recovery. To make the most of your rehabilitation, the team will
schedule activities during periods when you are alert. Medication
may help to increase arousal. Arousal can improve with recovery.

Weight
Weight loss right after an injury is not unusual. One reason is the
high level of physical stress on your body. Another reason is that
you may not feel hungry. To prevent further weight loss, you may
need to be reminded to eat or be provided with frequent small
snacks and meals.

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Some people may gain weight. This can happen because you may
not be able to tell when your stomach is full or you may forget that
you already ate. Changes in activity and the way the body burns
calories may cause weight gain as well. A lower calorie diet with
fewer snacks and regular exercise can help to prevent weight gain.

People who have had a brain injury have the same

need for nutrition as everyone else. This means eating
a healthy diet based on Eating Well with Canada's
Food Guide. The food guide includes a balance of
vegetables and fruits, meats and alternatives,
milk and alternatives and whole grains.

Swallowing
After a brain injury, your ability to swallow may change. You may
not be able to chew and swallow regular foods or drink liquid
because the muscles you use are not moving correctly. You may
need a special diet to help make it easier to swallow. This includes
foods that have a modified texture or drinks that are thickened.

A swallowing assessment can help to determine your risks

and needs. A speech therapist will recommend the types of foods
and drinks that you should have, the amount of help you need,
exercises and other strategies to help you.

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If you cannot swallow safely or you are not able to eat enough,
you may need a different type of food to get enough nutrition
and calories. A tube may be put into your nose, stomach or
small intestine. Liquid food and water is sent through this tube.
You may need this temporarily or for a longer term. Your health
care team will monitor and introduce foods when your swallowing
improves.

Bladder control
Loss of bladder control is common after a brain injury. Tell your
doctor and health care team about any concerns you have related
to your bladder routines so that they can help you manage your
bladder as independently as possible.

A brain injury can affect the bladder in these ways:

 the bladder may be overactive or underactive

 you may not feel the urge to urinate, know what to do or be
able to communicate to others

Your health care team will monitor your bladder function to help you
manage your bladder control. Sometimes, you may need medical
tests to properly asses the function of your bladder.

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A urologist is a specialist who may be consulted if bladder control is

related to a medical issue. Sometimes medications may be
prescribed to help.

Common strategies that may be recommended:

 taking regular bathroom trips (every 2 to 3 hours)

 drinking enough fluids
 using equipment and getting the help you need to maintain
your safety using the bathroom
 using a condom drainage system for males — a condom
drainage system is a condom with a tube leading to a
urine bag
 using intermittent catheterization where a catheter is inserted
into the bladder through the urethra — the bladder is then
drained and the catheter is removed
 using an indwelling catheter, which is left in the bladder
 wearing briefs, if only temporarily or when needed, such as
for outings

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Bowel control
Loss of bowel control is common after a brain injury. It is important
to tell your doctor and health care team about any concerns you
have related to your bowel routines so that they can help you
manage your bowels as independently as possible.

A brain injury can affect the bowels in these ways:

 the bowels may become overactive or underactive, causing

either many loose bowel movements or constipation
 the bowels may not empty completely
 you may not feel the urge to move your bowels, know what
to do or be able to communicate to others

Common strategies that may be recommended to promote regular

healthy bowel routines:

 using equipment and getting the help you need to maintain

your safety using the bathroom
 eating a healthy diet — this includes foods high in fibre, such
as whole grain products, fresh vegetables and fruits
 drinking lots of fluids — hot drinks may also help
 maintaining a regular routine
 using proper positioning in a bed or chair

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 About Brain Injury

 maintaining overall muscle fitness and regular exercise

 sitting on a commode in an upright position
 using a stool softener, laxative or suppository as needed

Skin
Changes to the skin are common after a brain injury. Check your
skin routinely for any sores, abrasions or changes in colour.
Pay special attention to your feet, back and buttocks.
These changes are common:

 skin sores - may be caused by rubbing the skin on sheets or

clothing too often or by not moving enough. When a person
does not move enough, the weight of the body restricts
blood flow which causes tissue to die. This can result in a
pressure ulcer. This happens most often on a bony area such
as the skin over the tailbone, ankles, heels, elbows or ears.
 rash - may be caused by contact with urine or bowel
movements, or by sensitivity to briefs.
 bruises or cuts - may be caused by improper transfers from
bed to chair or neglect of a paralyzed limb.
 acne - changes to the brain may signal the oil glands in the
skin to work very hard. This can cause acne on the face, back
or chest. Acne may also be caused by some medications.

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 About Brain Injury

Your skin needs to be cleaned regularly with a mild pH balanced

cleanser during a shower or sponge bath. While in bed, change
your position at least every 2 hours and shift your weight every
15 minutes while up in a chair or wheelchair. Special cushions or
mattresses may also help. Eating healthy foods such as fruits,
vegetables and foods high in protein and getting enough fluids
can promote healthy skin.

Fatigue
It is common to have fatigue after a brain injury. At first, your body
needs extra rest for your injuries to heal. As you become more
active, there is greater demand on your body’s energy. You may
also have mental fatigue. Your brain may feel overloaded making it
harder to think and learn.

It is important to balance your activities, schedule activities for

shorter periods of time, followed by a rest period. As you recover,
you may be able to do longer activities with shorter rests.

You may have difficulties sleeping. Change in

the quality of sleep is common after a brain
injury. Your health care team can give you
suggestions to help you sleep better or
recommend medications.

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Drugs and alcohol

The use of recreational drugs or alcohol is
not recommended. Alcohol and drugs that
are not prescribed by your doctor can:

 make balance and coordination worse,

which increases your risk of falling
 further reduce self-control
 affect recovery of brain cells

The combination of alcohol and some drugs can cause:

 seizures
 visual problems
 additional loss of brain cells
 unpredictable reactions to medications

If substance use is a concern, your health care team can help

by providing you with education, strategies and support to help
you manage.

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Part 4: Changes in thinking, behaviour

and mood after a brain injury

In this part you will learn:

 mood changes

 adjustments

 professional support

 brain injury support groups

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 About Brain Injury

A brain injury can change the way you think, behave and
feel (mood). You may not notice these changes as much as
physical changes after a brain injury, but they can affect how
well you are functioning.

Changes in the way that you think, behave and feel (mood)
will depend on:

 which area of your brain was injured

 the type and severity of the brain injury
 how recently the brain injury occurred

You may not experience any changes in the way you think,
behave or feel (mood), while others may have a significant
change in one or more other areas of functioning. Each survivor
is unique.

Here are general guidelines for identifying

and managing some of the more common
changes in thinking, behavior and mood that
may arise after a brain injury.

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Changes in mood
Behaviour What You May What You Do
or Emotion Experience
Irritability  get angry quickly  find a calm,
 verbal or physical relaxed setting
outbursts such as  play your favourite music
yelling or cursing  do not confront others
 can’t interpret  find your unique way of
situations accurately relaxing or calming
 can’t perform simple yourself down
tasks well
 worry about
small things

Emotional  mood swings  do not be self critical

Lability  excessive laughing or  acknowledge the times
(not able to crying you show self control
control
emotions)
 difficulty controlling  look to others to help you
emotions develop strategies to be
 emotions don’t always calm
fit with the situation
Depression  cry often  use activities and exercise
 to get your mind off
(occurs in 50% appetite and sleep
patterns are changed negative/sad thoughts
of people after a
brain injury)  lack motivation  reflect on what is happening
that is positive in your life
 withdraw from
social contacts  engage in
reinforcing/pleasant
activities

 If suicidal thoughts
 thoughts of suicide or
are expressed,
harming yourself
seek professional help
right away.

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Behaviour What You May What You Do

or Emotion Experience
Disorientation  speech is  use calendars, pictures
disorganized and and photo albums to help
thoughts are not with
connected  review details like who
 mix up facts with and where you are, date,
fantasy and so on
 not sure where you  talk about familiar things
are or the identity and people
of others
 mix up sequence
of events
Egocentricity  focused only on  listen to other peoples
yourself feedback about your
and insensitive to the behaviour
feelings of others
 misinterpret other
people's responses
or actions
Denial  cannot admit to  listen to the input of
problems that others others
are pointing out to you  be open to discussion
 always make excuses about your activity or
for not doing or behaviour
completing things

Changes in  forget to eat  seek medical advice

eating patterns  constantly eats  schedule regular meal
 secretly eats times
 frequently complaining  try to keep a regular
of hunger despite routine
having recently eaten  eat with other people
 do not feel hungry  keep healthy snacks
around the house

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Behaviour What You May What You Do

or Emotion Experience
Changes in  talk constantly or  listen to feedback from
communication very little friends and family
 do not remember  use recommended
previous discussions strategies from the
 do not take part in or Speech-Language
initiate conversation Pathologist
 can’t come to a  consult a health care
conclusion or professional
a solution
 can’t stop talking,
even with reminders
 can’t take turns in
conversation
Forgetfulness  can’t consistently  seek a quiet, calm setting
remember events  ask people not to
 recall information interrupt you
slowly  use aides to help you
 forget to complete remember this may
tasks include a cellphone,
ipad/tablet, alerts, white
boards, memory book,
calendars and clocks
or watches
 listen to feedback
 ask or listen to clues
 when clues don't work,
tell the person to give you
the missing information
 help retrain the memory
by providing a recap of
recent events or activities
Impulsivity  speak or act before  think before you act or
you think speak
 taking unnecessary  ask someone you trust
risks about possible risks
before you act

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Behaviour What You May What You Do

or Emotion Experience
Agitation or  feel unsettled and your  go to a quiet setting and
restlessness body feels tense reduce distractions and/or
 can’t sit still or pace irritants - talk yourself
aimlessly down
 unusually irritable  try relaxation strategies
such as deep breathing
 over-react (such as
exercises, meditation and
yelling, destructive
visualization
 do something you enjoy
 consider talking to
someone
Perseveration  talk repetitively or  try to force your attention
endlessly about one onto something else
thing  listen to the feedback of
 cannot change the others
topic in your head  let others to re-direct you
to another topic or activity
Lack of  unable to follow  break down an activity
initiation through on a plan into smaller steps
 cannot get started on  allow others to start the
a task even though task with you
you want to  follow written instructions
complete it on how to complete the
steps
Lack of  decreased interest in  find activities the person
motivation activities might enjoy
and apathy  has no desire to carry  help the person find a role
on with any activities to play that will be
 give up easily meaningful to them
 resist encouragement  support any involvement
to try an activity or to in an activity, even if the
try it again person needs to leave
early
 seem indifferent
towards loved ones  encourage the person to
and/or about activities try a task again, even if
previously enjoyed the first attempt was not
successful

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Behaviour What You May What You Do

or Emotion Experience
High or low  may say inappropriate  listen to people when they
sexual interest remarks about the tell you that your
opposite sex behaviour is making them
 try to make uncomfortable or is
inappropriate physical inappropriate
contact with others  realize that there are
 make inappropriate consequences to your
sexual advances behaviour
 persistent about sex  consider counseling
 consider self-gratification
options

Changes in  unable to fall or stay  stay active during the day

Sleep Patterns asleep  gradually reduce length of
 excessive sleep during naps and increase activity
the day  keep bedtimes and
waking times the same
every day, even on
weekends
 avoid caffeine, exercise
and emotionally or
mentally challenging
activities before bedtime
Disorientation  talk in a disorganized,  use calendars, pictures
disconnected way and favourite music to
 mix fact and fantasy orient the person
 unaware of your  review details like who
location, date, own and where you are, date,
identity or identity of and so on
others  talk about familiar things
 confuse time periods and people

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Behaviour What You May What You Do

or Emotion Experience
Verbal  blurt out thoughts  be aware of your
outbursts even if it is rude reactions and the
feedback of others and
 speak inappropriately
attempt to use physical or
 curse excessively behavioural relaxation
strategies
Anxiety  constant and  encourage deep
overwhelming worry or breathing exercises and
fear, such as asking other relaxation
“what if...” questions or techniques
repeating certain  try to maintain a normal
concerns over and routine. Add structure to
over your day. Include positive
 difficulty relaxing or activities but pace your
feeling restless or on activities throughout the
edge day
 irritable  seek peer support (brain
injury groups) and/or
 low energy or fatigue
professional support
 difficulty concentrating
 physical symptoms
such as shortness of
breath, heart
palpitations, muscle
tension, headaches,
upset stomach or
sweating
 problems sleeping,
such as trouble falling
asleep at night or
waking up in the
middle of the night

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Adjustment

Although you had the injury, your family is also affected. The road
to recovery is not neat and orderly; it may feel as if you are on a
roller coaster of emotions. The impact of the injury will be different
for each member of your family. There is no right or wrong way for
them to feel.

Professional support

If you and your family are struggling to accept and cope with the
changes after your brain injury, ask your health care provider for a
referral to see a professional, such as a counselor.

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Brain injury support groups

Brain injury support groups can help both you and your caregiver
find ways to respond to new and challenging thoughts, behaviours
and mood after a brain injury.

Some support groups have meetings just for you and also just for
your family members and/or caregivers. See pages 71 to 77 for
more information.

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Part 5: Towards the Future

In this part you will learn about:

 community supports

 legal supports

 financial supports

 returning to school

 returning to work/productivity

 returning to driving

 quality of life

 helpful resources

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Community supports
Many people continue to need ongoing support in their community
for continued care, rehabilitation, return to school and work.

In most communities specific support and services are available.

See pages 71 to 77 for more information.

Legal supports
In some cases it may be advisable to consult a lawyer.
Depending on how the injury took place, you may benefit from
working with a personal injury lawyer.

If you need help locating a personal injury lawyer, the Law Society
of Upper Canada can provide you with a list of personal injury
lawyers in your area. They can be reached at 1-800-668-7380
or through their website: www.lusc.on.ca

The Insurance Bureau of Canada can answer general questions

about insurance rights at 1-800-387-2880 or through their website:
www.ibc.ca/en

The Financial Services Commission of Ontario (FSCO)

www.fsco.gov.on.ca can provide information on the insurance
legislation.

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The Automobile Accident Benefits Service (AABS)

www.slasto.gov.on.ca/en/AABS, a branch of the Safety, Licensing
Appeals and Standards Tribunals Ontario www.slasto.gov.on.ca,
provides dispute resolution. If the insurance company rejects a
claim for accident benefit(s), you may apply to AABS for help in
resolving the dispute (1-800-255-2214).

Financial supports
Often with a brain injury, you may need to take time off work. Applying
and being approved for benefits can take time so we suggest that you
start right away. It can take months before you receive any benefits.

If you are employed, we suggest that you contact your employer

first about your benefits.

Ask: What short term and long term disability does my employer
provide? What are the terms of the policy? What forms must be
completed?

Government benefits you may be eligible for:

 Employment Insurance (EI)

– Sickness Benefits
– Compassionate Care

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 Canadian Pension Plan Disability (CPP-D)

 Ontario Works (OW)
 Ontario Disability Support Program (ODSP)

If you have questions or need help filling out the forms,

contact a member of your health care team.

If your injury is a result of a criminal act, workplace injury or related

to a motorized vehicle, talk to a member of your health care team
about your options. There may be legal compensation or other
opportunities available.

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Employment Insurance (EI)

Sickness benefit

Requirements
 Contribution based, you must have paid into to EI. It is NOT
based on your assets or needs.
 Must have worked 600 hours in the last 52 weeks and made
contributions.
 Is available to self-employed persons if they joined the
EI program.

Definition
 Unable to work due to sickness or injury.
 Medical certificate needed from doctor.

Process
 EI applications are done on-line.
 Require Record of Employment (ROE) from employer
(mostly done on-line).
 Need to apply as soon as possible after stopping work.
 A 2 week waiting period is served for all EI claims.
 It takes 6 to 8 weeks to receive first payment.
 Maximum 15 week benefit.

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 About Brain Injury

Amount

 55% of average earnings to maximum of $514/week (2014).

 Paid for maximum 15 weeks or time indicated by doctor on
medical certificate.
 Must submit reports every 2 weeks.

Tips

 Mail medical report or drop off at Service Canada office.

 Can complete application at Service Canada office if you do not
have a computer.

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Employment Insurance (EI)

Compassionate Care

Requirements
 Contribution based, you must have paid into to EI. It is NOT
based on your assets or needs.
 Must have decreased work by 40%.
 Must have worked 600 hours in the last 52 weeks and made
contributions.
 Must be providing care and support to a family member or
loved one.

Definition
 Family member must be “gravely ill” and at significant risk of
death within next 26 weeks.
 Medical certificate needed from doctor treating the family
member/loved one.

Process
 Same as other EI applications; online.
 Submit Record of Employment, Medical Certificate, Release of
Medical Certificate consent form.
 6 to 8 weeks before first payment.

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Amount

 55 % of earnings up to a maximum amount.

 26 week benefit.
 Benefits can be taken for up to 52 weeks
 Benefits can be shared among family members.

Other

 Can be transferred to a sickness benefit if person becomes ill

before end of claim or within one year. Must file a medical
certificate to do so.

For more information about EI benefits

search the website: servicecanada.gc.ca

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CPP Disability (CPP-D)

Requirement

 Contribution based, you must have paid into CPP. It is NOT

based on your assets or needs.

 Contributed 4 of the last 6 years OR contributed 3 of the last

6 years and a total of 25 years of contribution overall.

 People over 18 and under 65.

Exceptions

 Contribution not made while child-rearing or collecting CPP-D.

 Under certain conditions a person may submit a late application

for CPP-D. The Social Worker can discuss these conditions
with you.

Definition

 Severe (unable to do any job).

 Prolonged (1 year from time of application or longer).

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Process

 Application includes: personal information, questionnaire,

consent forms and a medical report.

 Takes at least 4 months (or longer) to process application and

make a decision.

 Will be sent “Notice of Entitlement” with start date and monthly

amount along with any back or retroactive payments.

General information

 Benefits are taxable.

 Benefits for children; if less than 18, or if 18 to 25 enrolled

full-time in school.

 Has return to work incentives and if your same disability returns

within 2 years, benefits are automatically restarted once CPP
is notified.

 No medication or dental coverage.

 The Trillium Drug Program (TDP) is available to assist with the

cost of prescription drugs. Call 1-800-575-5386 to request an
application form, or you may obtain one at your
pharmacy.You may also download the “Application for Ontario
Drug Benefits” and “A Guide to Your Application (ODB)”.
www.health.gov.on.ca

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 The Assistive Devices Program (ADP) provides funding

for assistive devices such as, wheelchairs, mobility aids,
prostheses, braces, visual and communication aids or
hearing aids. Contact the Ministry of Health and Long-Term
Care, ADP, for further information at 1-800-268-6021.
www.health.gov.on.ca/en/public/programs/adp

Tips for CPP-D

 Keep copies of all records.

 Contact Service Canada to request “Statement of Contributions”

in order to know CPP-D monthly amount.

For more information on CPP-D

search the website: servicecanada.gc.ca

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Ontario Works (OW)

A municipal program through Social Services. Basic monthly support

to those in financial need (short term assistance).

Requirement
 Is asset-tested, must demonstrate financial need and limited
resources and household income.
 You will need to provide financial information (previous income,
housing costs, income tax, bank records, family size, assets)
dating back several months.

Allowable assets
 There is a list of allowable assets, such as your home, that your
worker can review with you. They will not include these assets
when figuring out what is available to you.

Three categories for OW

 Employable.
 Restrictions to participate because temporarily ill or caring for
an ill person.
 Disabled, a permanent barrier to employment and will be
applying for Ontario Disability Support Program.

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Process

 Online application.
 Contact local office for telephone application.
 Then, intake appointment (if long term disability then inform
OW worker so ODSP application can be started).
 Payment usually within 4 working days.

Other benefits

 Ontario Drug Benefit card (ODB).

 Other benefits both mandatory and discretionary.
 Please discuss your specific situation with your worker.

For more information on OW

search the website: www.mcss.gov.on.ca
or call 905-546-4800 (Hamilton)

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Ontario Disability Support Program (ODSP)

A provincial program through Ministry of Community and Social

Services.

Requirement
 Is asset-tested for those with a disability and financial need.
 Must verify limited assets and household income from
all sources.
 Will need to show financial records from several months back.

Allowable assets
 Some assets are allowable, which your worker can review
with you. They will not include these assets when figuring out
your benefits.

Definition of disability
 A Disability Determination package will be given to you
containing:
o Health Status Report for doctor
o Activities of Daily Living report for your doctor or allowable
health professional
o Self report
o Consent form

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 Disability: Substantial physical or mental impairment, continuous

or recurrent, lasting one year or more, and limits your ability to
work, look after yourself or function in the community.

Process
 Online or contact local office for telephone application.
 Scheduled appointment to supply required information.
 Must demonstrate financial need to continue application,
then disability is determined.
 Takes 4 to 6 months.
 If you have qualified for CPP-D, then you do not need further
medical clearance from ODSP. Must just meet asset
determination.
 If you have immediate financial needs then you must apply
for OW.

Other benefits
 Please discuss any other benefits with you ODSP worker such
as medication coverage.

For more information on ODSP

search the website: www.mcss.gov.on.ca
or call 905-521-7280 (Hamilton)

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Senior benefits (if you are 65 or older)

that may be available

If you are over 65, you currently receive a pension income. You do
not need to apply for further disability income. If you have areas of
financial need, please speak with a Social Worker about your
concerns.

Income sources for seniors

For more information on the below benefits search the websites:

 Service Canada - www.servicecanada.gc.ca

 Canada Pension Plan (CPP)

 Old Age Security (OAS)

 Guaranteed Income Supplement (GIS)

 Ontario Guaranteed Annual Income System (GAINS)

http://www.fin.gov.on.ca/en/credit/gains/

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Returning to school
If you wish to return to school, contact
the school last attended or the Board of
Education.

 You will be directed to Special Education.

 You will develop a learning plan with the Special Education
Department and your team.
 You may be eligible for an Educational Assistant.

If you are 16 to 18 years old and not in school right now, you may
choose to:

 Start regular school with a full or reduced course load.

 Take correspondence course and work at home.
 Sign up as a mature student for night school.

Colleges and universities also have services for special needs

students that include:

 Teaching study skills.

 Providing special equipment to assist learning.
 Giving information about bursaries for tuition, books and
disability related equipment.

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Returning to work/productivity
Returning to work and/or productive activities following a brain
injury may include several steps. Work with a health care provider
to return to activities such as:

 volunteer work
 hobbies
 new activities
 returning part-time, returning to work on modified duties,
and/or returning to full-time work

There are vocational assessment services that can assess

your work skills. They also provide work retraining programs.
Discuss these services and your options with your team.

Returning to driving
In Ontario, your doctor must report to
the Ministry of Transportation (MTO)
that you have had a brain injury. This is
because it might be dangerous for you
to drive a car.

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The rules in Ontario are:

 Your doctor must assess your readiness to drive.

 You may return to driving if you have no major changes in:
 your vision
 your physical skills
 your thinking such as problem-solving or judgment
These areas must be assessed by your health care team.
 When your doctor is not sure if you are ready to drive, he or she
may tell you to go to a special driving centre for more tests.

When can I be tested for driving?

This is decided on an individual basis. You need to discuss this with

your occupational therapist, neuropsychologist, your doctor or
specialist.

What is the process for getting my license back?

The timing is different for everyone. This is because brain injuries

affect everyone differently. Your health care team can help you
decide when you are ready.

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Do not drive during this time because the Ministry of

Transportation (MTO) was told about your injury:

 You will receive a letter from the MTO that will tell you first if your
license is suspended.
 The letter will also tell you the steps you should take to get your
license back.

The steps to get your license back can include:

 The MTO may ask you to get a letter or have a form filled out
by your family doctor or specialist.
 The MTO or your health care team may require your driving
skills to be tested. This is called an assessment and
may include:
o a written test
o an on-road driving test
o a vision test
o a cognitive test

Ask your health care provider about

Ministry of Transportation Approved Driving
Assessment Centres in your area where you can
take these tests. See the following website for
more details www.mto.gov.on.ca

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What is a driving assessment?

There can be two parts to a driving assessment.

Part One: Pre-road tests

 Your health care team will either do these tests with you at
the hospital or at a driving centre.
 They look at your vision, judgment, thinking and
physical skills.
 These tests will show whether you are ready for the
on-road test, you need more practice or you should think
about different options.

Part Two: On-road test

 This test will be done in a car with a Certified Driving

Instructor.
 They will look at your driving skills, such as safety, following
directions and your physical ability to drive a vehicle.
 You will have to cover the cost, which is about $500 to $800.
This is why it is important you wait until you are ready.

You must be referred for the driving

assessment by a doctor.

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What will the driving assessment tell me?

1. You can return to driving.

2. With changes made to your car, you may be able to return

to driving.

3. It is too soon to return to driving, you need drivers’

rehabilitation. After practicing or learning new ways to drive,
you may return to driving.

4. You are not able to return to driving.

What if I am no longer able to drive?

This may be a very hard time for you and your family. It is normal
to feel upset, angry, or a sense of loss. It may be hard to accept
this decision, but there are other options for you.

Ask your health care team members about resources

in your community that can help you get to places
you need to go.

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Quality of life
Having a brain injury impacts every person differently. It is
important that you continue to live your life and be involved in
meaningful activities and roles that reflect your interests, goals
and abilities.

You may find that many things have changed such as your
priorities, routines, and demands on your time. After a period of
adjustment, life will settle into a new routine.

Making healthy life choices will help you recover and have a better
quality of life.

Eat well
Try to eat three meals a day at about the same time each day.
If you have questions about what to eat, check with your family
doctor; he or she may refer you to a dietitian. Healthline
www.healthline.ca is an on-line resource that may also be able
to help you with questions or concerns.

Sleep well
Lack of sleep can limit your ability to think clearly and make good
decisions. It also affects your physical health, since your body
repairs and rejuvenates itself during a normal sleep cycle.

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Exercise regularly
Be active for at least 20 minutes each day.

Avoid substances
Avoid substances such as alcohol and street drugs.

Avoid smoking
Talk to your doctor or health care professional about strategies
to help you quit.

Stress management and pacing

 Use relaxation exercises
 Decrease obvious stressors
 Engage in enjoyable activity
 Stay mentally and physically active
 Enjoy family and friends

Set goals
Setting realistic goals will help you to stay focused and
be successful. Share your plan and involve family and friends
and caregivers so that they can support you.

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Explore your interests

Many individuals may find themselves with more free time
available. Make use of the free time that you have. Choose
activities that you have enjoyed in your past or that you would
like to try.

It is important that you understand your abilities when choosing

activities and seek help as needed to be successful. All activities
offer opportunities to practice and develop skills. Your therapists
can provide suggestions to improve your skills.

Get involved in your community

Being involved in your community can provide you with
meaningful activities and enhance social network. There are
many opportunities to be involved and connected to your
community. Talk to your health care team, family and
friends. They can provide support and help you identify
opportunities that match your interests, goals and abilities.
Take a class, join a gym, volunteer or attend a recreational
program, enjoy cultural and spiritual activities.

Brain injury support

Most communities have a brain injury association that provides
opportunities for support, education, social and/or recreational
opportunities.

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Transportation
If you are unable to drive, there are options available in most
communities. If you need specialized transportation, wheelchair
accessible transportation services are available in most
communities. Your doctor or health care professional can help
you arrange these services.

To find out more about transportation options available in your

community or travelling with a disability, visit this website:
www.accesstotravel.gc.ca

Volunteer drivers
Many communities have volunteer drivers that charge a
small fee. These services are usually prioritized for medical
appointments. Family and friends may also be able to help you
with transportation.

Public transportation
Learning to use public transportation may increase your
opportunities for independence and greater access to the
community. Your health care team can provide support and
education related to using the bus and/or taxis. There are
sometimes subsidies available to individuals to support
transportation costs.

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Leisure links
Check with your parks and recreation facilities for detailed
information on programs, services and supports.

Access to entertainment
A community access card is available for individuals with a
disability to participate in recreation activities with an attendant.
Visit www.accessinformation.ca

Helpful information

Community Care Access Centre (CCAC)

CCAC provides access to community care in your home,
day programs and long term care. To find your local CCAC
support, go to www.healthcareathome.ca

The Ontario Neurotrauma Foundation

Supports research and practice in the field of neurotrauma.
For more information go to www.onf.org

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Rehabilitation Resource Centre

The centre works with individuals, family members and
caregivers whose lifestyle is significantly altered by illness
or injury. It provides:

 personalized information
 peer support
 links to the broader community

Location:
Regional Rehabilitation Centre
300 Wellington Street North, 1st Floor
Hamilton, ON L8L 0A4
Phone: 905-521-2100, extension 40805

Ontario Brain Injury Association

www.obia.ca
1-800-263-5404
The Ontario Brain Injury Association (OBIA) is a provincial
not-for-profit, charitable organization. Their mission is to enhance
the lives of Ontarians living with the effects of acquired brain
injury (ABI) through education, awareness and support.

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OBIA’s services include:

 information and resources on acquired brain injury
 1-800 toll free helpline
 personal advocacy and support
 training and education for families and professionals

Camp Dawn
Camp Dawn is a camping retreat for adults living with a brain
injury in Southern Ontario. Camp Dawn provides campers with
the opportunity to practice and develop skills and independence
in an outdoor, recreational environment that promotes a healthy
lifestyle. Camp Dawn also provides an opportunity to get away,
make new friends, meet with old friends, try new activities, and
take part in familiar activities in a supportive environment
alongside others who are facing similar challenges.

Camp Dawn
C/O Brain Injury Association of London
London, ON N6A 3R4
Phone : 519-642-4539
Fax : 519-642-4124
Email: campdawninfo@gmail.com
Website: www.campdawn.ca

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Brain Injury Associations

South Central Ontario

Brain Injury Society of Toronto Head Injury Association

40 Orchard View Blvd. Suite 252 of Fort Erie and District
Toronto, ON M4R 1B9 649 Niagara Blvd.
Phone: 416-830-1485 Fort Erie, ON L2A 3H7
Email: info@bisto.ca Phone: 905-871-7789
Website: www.bist.ca Email: haifevents@bellnet.ca

Brain Injury Association of Niagara Brain Injury Association

Office Location: of Peel & Halton
10-261 Martindale Road 2155 Leanne Blvd. Suite 240
St. Catharines, ON L2W 1A2 Mississauga, ON L5K 2K8
Mailing Address: P.O. Box 20019 Phone: 905-823-2221
Thorold, ON L2V 5B3 Email: biaph@biaph.com
Phone: 905-984-5058 Website: www.biaph.com
Email: bianstaf@niagara.com
Website: www.bianiagara.org/

Hamilton Brain Injury Association

822 Main Street East
Hamilton, ON L8M 1L6
Phone: 905-538-5251
Email: info@hbia.ca
Website: www.hbia.ca

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South Western Ontario

New Beginnings Club Brain Injury Association of

9 Maple Leaf Drive Grey Bruce
Chatham, ON N7M 6H2 P.O. Box 481
Phone: 519-351-0297 Owen Sound, ON N4K 5P7
Email: lgall@newbeginnings-cksl.com Phone: 519-373-8555
Website: www.newbeginnings-cksl.com Email: biagrey-bruce@hotmail.com
Website:

Brain Injury Association of London

and Region Brain Injury Association of
560 Wellington Street, Lower Level Windsor & Essex County
London, ON N6A 3R4 201-200 West Grand Blvd.
Phone: 519-642-4539 Windsor, ON N9E 3W7
Email: braininjuryassoc@bellnet.ca Phone: 519-981-1329
Website: www.braininjurylondon.on.ca Toll Free: 1-800-263-5404
Email: info@biawe.com
Website: www.biawe.com
Brain Injury Association of
Waterloo-Wellington
555 King Street West Brain Injury Association of
7th Floor Sarnia Lambton
Kitchener, ON N2G 4W1 1705 London Line
Phone: 519-772-7500 Sarnia, ON N7W 1B2
Website: www.biaww.com Phone: 519-337-5657
Email: info@sarniabiasl.ca
Website: www.sarniabiasl.ca

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Northern Ontario

Simcoe County Brain Injury Brain and Seizure Association

Association (Timmins)
#D - 580 Bryne Drive 733 Ross Avenue
Barrie, ON L4N 9P6 Timmins, ON P4N 8S8
Phone: 705-734-2998 Phone: 705-840-8882
Email: scbia@csolve.net Email: sabicrl@eastlink.ca
Website:
www.seizurebraininjurycentre.com
Brain Injury Association of
Sudbury & District
750 Brancroft Drive Brain Injury Association of Sault
Sudbury, ON P3B 1T9 Ste. Marie and District
Phone: 705-670-0200 127-31 Old Garden River Road
Email: info@biasd.ca Sault Ste. Marie, ON P68 5Y7
Website: www.biasd.ca Email: biassmd@shaw.ca
Website: www.braininjuryssm.ca

Brain Injury Association of

Thunder Bay & Area Brain Injury Association of North
426 Balmoral Street Bay and Area
Thunder Bay, ON P7C 5G8 280 Oakwood Avenue
Toll Free: 1-800-796-1188 North Bay, ON P1B 9G2
Email: bisnoro@bisno.org Phone: 705.840.8882
Website: www.bisno.org Email: contact@niaba.ca
Website: www.bianba.ca

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Eastern Ontario

Brain Injury Association Brain Injury Association of

Peterborough Region Southeastern Ontario (Kingston)
158 Charlotte Street Epilepsy Kingston
Peterborough, ON K97 2T8 100 Stuart Street
Phone: 705-741-1172 Kingston, ON K7L 2V6
Toll Free: 1-800-854-9738 Phone: 613-536-1555
Email: biapr@nexicom.net
Website: www.biapr.ca
Brain Injury Association of
Quinte District
Brain Injury Association of 223 Pinnacle Street
Ottawa Valley Core Centre
300-211 Bronson Avenue Bellevile, ON K8N 3A7
Ottawa, ON K1R 6H5 Phone: 1-866-894-8884
Email: Email: biaqd@bellnet.ca
braininjuryottawavalley@bellnet.ca Website: www.biaqd.ca
Website: www.biaov.org

HamiltonHealth Sciences, 2003

PD 4394 – 01/2018
dpc/pt/BrainBook/BrainInjuryHandbook-trh.docx
dt/January 25, 2018

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