Craig Hospital Brain Injury Handbook

BRAIN INJURY HANDBOOK

Dear Craig Hospital Patients and Family, This Brain Injury Handbook has been produced to provide you with basic information you will need to know about living with a brain injury (BI). Use this book as a reference during your stay here at Craig Hospital. Not all of this will apply to you right now, but we encourage you to keep it as a resource for you, your family, and friends in the future. There will be many opportunities for learning during your time at Craig. We invite you to participate fully in all therapies, classes, recreation outings, and free time.

Craig Hospital produces many educational videos that are available to you. From your bed, you can access videos through your TV. Videos can also be viewed on the craighospital.org website.

Relaxation and good sleep are important for successful rehabilitation following any injury. On your television, the C.A.R.E. ChannelŠ provides 24-hour programming with relaxing music and nature video. Use the C.A.R.E. ChannelŠ to promote sleep and decrease hospital noise. Massage therapy and acupuncture are also available to patients. Ask your nurse for more information.

There are computers with internet access and a printer available. Ask your rehab team about the locations of these. Use our computers to check your e-mail or search the Web. Sincerely, Your Brain Injury Team Please contact Bevin Peterson, Patient and Family Education Coordinator, if you have additional questions about educational resources.

Bevin Peterson, MS, RN, CRRN Patient & Family Education Coordinator 303-789-8211 bpeterson@craighospital.org

The Craig Hospital Brain Injury Program Table of Contents Section I: The Brain Injury Program...................................................................................................1 The Rehab Team........................................................................................................................1 Welcome and Introduction........................................................................................................2

• Mission Statement • Program Goals and Phases • Types of Treatment • Family Involvement • Communication Family Conferences Schedules The Brain Injury Unit: Environment of Safety and Recovery................................................4

• Healing Environment • Safety Devices Rehab Team and Roles............................................................................................................6

Section II: About the Brain................................................................................................................12

• The Uninjured Brain • Parts of the Brain Types of Brain Injury...............................................................................................................14

• Facts about Brain Injury • How Brain Injury Happens • Types of Brain Injury Diffuse Focal Hypoxia Ischemia • Secondary Neurological Problems • Elevated Intracranial Pressure • Hematoma • Subdural Effusion • Hydrocephalus • Seizure Activity

Section III: Consequences of Brain Injury.......................................................................................21 Medical Issues Associated with Brain Injury........................................................................21 • Autonomic Problems

• Bladder Control

• Blood Clots • Breathing • Digestive System and Bowel Management • Heterotopic Ossification • Hormones • Liver Function • Nutrition • Seizures • Skin Care Behavioral and Social Changes.............................................................................................23

• Perseveration • Mood changes • Fatigue Physical Fatigue Psychological Fatigue Mental or Cognitive Fatigue

• Sexual Changes Communication Problems......................................................................................................27 • Speaking and Voice problems • Language Thinking and Cognition...........................................................................................................29

• Post-traumatic Amnesia (PTA) or Post-traumatic Confusion State (PTCS) • Memory Impairments Organization Planning Ranchos Los Amigos Levels of Cognitive Function............................................................33 Sensory and Perceptual Problems........................................................................................36 • Hearing Problems

• Visual Disturbances • Smell and Taste Disturbances • Vestibular Disturbances Swallowing Problems..............................................................................................................39 • Bedside Swallow Evaluation (BSE)

• Blue Dye Test

• Modified Barium Swallow Study (MBSS) • Fiberoptic Endoscopic Evaluation of the Swallow (FEES) Mobility and Movement...........................................................................................................40 • Strength: Atrophy, Neuropathy, Paresis • Joint and Bone Changes • Muscle Tone: Rigidity, Spasticity, Flaccidity • Coordination Changes: Ataxia, Apraxia, Movement Disorder

Section IV: Family and Friends.........................................................................................................43 • A Family Matter • Coping with Emotions Tips For Interacting with Your Injured Family Member/Friend............................................46 Section V: Discharge - Leaving the Craig Inpatient Program........................................................48 • Community Resources • Benefits and Financial Resources • Driving and Transportation • Community Reintegration and Productive Activity • Using Alcohol, Tobacco, and Marijuana Section VI: The Craig Outpatient Program and Outpatient Clinic.................................................54 • Outpatient Clinical Care Management • Community Reintegration • Driving and Transportation • The Outpatient (Medical) Clinic Section VII: Glossary.........................................................................................................................57 Section VIII: Additional Information..................................................................................................65 • Comments/Questions for my Team • Patient and Family Pass Information • Seizure Quiz • Discharge Checklist • Therapeutic Recreation Overview *Please ask your Rehab Team for other educational materials that are specific to your family member or friend. Craig Hospital has an abundance of additional educational resources available online at craighospital.org.

The Craig Hospital Brain Injury Program Section I: The Brain Injury Program My Craig Hospital Rehab Team Rehab Doctor: Phone Number: Location: Clinical Care Manager: Phone Number: Location: Nursing Team Leader: Phone Number: Location: Speech / Language Pathologist: Phone Number: Location: Physical Therapist: Phone Number: Location: Occupational Therapist: Phone Number: Location: Psychologist / Neuropsychologist: Phone Number: Location: Therapeutic Recreation: Phone Number: Location: Nutritional Services: Phone Number: Location: Chaplain: Phone Number: Location: Pharmacist: Phone Number: Location:

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Welcome and Introduction Welcome to the Craig Hospital Brain Injury Program. We hope to be a resource and advocate for you and your family in this stage of the recovery journey. This handbook is designed to be an interactive tool for education, planning, and resources during your time at Craig and beyond. It is written for both the family and the individual with the injury. The individual with the injury may not yet be able to use this book independently during the inpatient stay. Therefore, the family member is often referred to as the reader.

Mission Craig’s mission is to advocate for and provide exceptional patient and family centered care for those affected by spinal cord and brain injury. Together we bravely strive for optimal health, independence, and life quality with unyielding determination. We do this in the brain injury program by providing customized, comprehensive, interdisciplinary care: • Customized: Care you receive will fit your individual needs.

• Comprehensive: Treatments will focus on many aspects of your life.

• Interdisciplinary: Your care will be provided by a team of professionals.

Goals The goals of the brain injury program are: 1. Provide education about brain injury and your unique care needs 2. Prepare you to be safe and confident outside of the hospital 3. Promote healing and recovery to maximize independence These goal areas will be customized to meet your specific needs. Every injury is unique, every person is unique, and you are on a unique healing journey.

Resources Your treatment team will be your main resource for questions and needs during your stay.

Craig’s website, craighospital.org, has additional helpful resources about brain injury: Connect If you would like to connect with Craig on social media during your stay, and follow our news and other stories, here is our information: Facebook: Craig Hospital Instagram: @CraigHospital LinkedIn: Craig Hospital Twitter: @CraigHospital Program Phases The Craig brain injury program has four phases. These phases can overlap and are different for each person: 1. Evaluation: Your team will get to know you by performing tests to gather information for a treatment plan.

2. Treatment Planning: You will meet with your team at a team conference to discuss the 2

rehabilitation plan.

3. Therapy: Your therapy will include practicing real life activities, exercise, education, and planning to meet your goals. Your team will re-evaluate the therapy plan and adjust as needed to meet your discharge goals.

4. Discharge Preparation: Discharge planning begins at the time of your Craig admission.

Treatment goals will focus on what is needed for you to feel as confident and successful as possible when you leave the hospital.

Family Involvement and Support Family members are an important part of the team. We appreciate your input and participation. The treatment team will guide you to assist your family member at each stage of treatment.

Attending the weekly BI Family Group is a great way to receive education and support. As an active family member, we remind you to take good care of yourself during this time. Rehabilitation is a long process that extends into life after Craig, and you will need to pace yourself. Taking care of yourself allows you to be more present and helpful to your family member. Section 4 of this book offers specific information for Family and Friends.

Communication with family and friends To help maintain patient privacy and security, each patient is assigned a privacy code at admission.

Only people who know this code will be allowed to talk with the patient or receive information about the patient by phone. It is up to you and your family to decide with whom this code should be shared.

Key Communication Person You and your family may want to choose one person to be the key communication person. This can help reduce stress and make your life easier. This person can: • Update family and friends • Take questions or concerns to the Craig staff and bring back the answers If you are not sure who should be the key communication person, your Clinical Care Manager (CCM) can help you.

Team Conferences and Meetings You and your family will be involved in team conferences during your stay. Team conferences help maintain good communication and align expectations for the therapy plan. Family members are encouraged to attend as well as the person with the brain injury, if appropriate. Conferences are a good time to ask questions or communicate with the therapy team.

Your rehabilitation team meets weekly to discuss and update progress during team rounds. Although patients and families do not attend rounds, these rounds allow the rehab team to discuss concerns and align treatment goals.

Daily Schedule Rehabilitation at Craig happens around the clock. Every activity you participate in is an opportunity to practice and prepare for discharge. Formal therapy hours are typically between 8:00am and 4:00 pm, Monday through Friday. However, every schedule is different and is customized for your adapting needs. You will get a schedule printed daily with times of therapy, classes, rest periods and Therapeutic Recreation activities and outings. Unscheduled times can be used for Therapeutic Recreation, 3

independent activities, extra practice of skills as directed by your team, rest, and family visits.

Types of Treatment Treatment can come in many forms and may include: • Functional activities: This is the primary mode of treatment. Practice in common activities that are meaningful and need to be performed day to day, can help people with brain injury gain independence, and better transfer those skills to outside of the hospital.

• Groups and classes: Groups and classes are helpful to gain skills in a social setting and challenge skills in a different way than one-to-one therapy.

• Education and Training: Some sessions will involve direct education and training that you will need outside of the hospital.

• Exercise and skill practice: Exercise and skill practice will be done in therapy and outside of therapy in “home exercise programs” done after hours.

Specialty Clinics and Services Specialty clinics and services may be on your schedule to address needs in the areas of vision, swallowing, spasticity, and wheelchair equipment. The rehab team will determine which clinics are appropriate. Because they are not scheduled every day, these will take priority over other therapy sessions.

Weekends Weekends at Craig are designed for rest from the therapy week and allow time to practice skills learned in therapy. This is a good time to enjoy visitors, review what you learned the previous week, and participate in Therapeutic Recreation activities or personal/family outings.

Getting Around Campus and Pass Training Moving about campus independently (without a staff member) depends on your unique progress, abilities, and safety. A special training and education checklist is required for this. You can find the pass training checklist in the back of this book.

The Brain Injury Unit: Environment of Safety and Recovery The brain injury unit is designed to promote healing and safety. The entire team is responsible for helping maintain a safe and healing environment.

Healing Environment An individual who has experienced a brain injury may become easily overwhelmed and overstimulated.

An environment that is structured and routine can help with healing. Strategies to support this include: • Low Stimulation Environment: Your family member may have a sign on the door labeled “low stimulation environment”. Guidelines will be posted in the room to help the person stay calm.

• Sleep Centric Unit: Your family member may wear a sleep tracking watch to help the staff more quickly regulate sleep-wake cycles. We also use techniques such as dimming the lights at certain times, and use special routines to help prepare a person to sleep or be awake.

• T-Zone: The T-Zone is an activity room on the hospital unit that is supervised during the day to provide structured activity or supervision during down-time from therapy.

• Care Plans: Care plans help the rehabilitation team stay aligned to best help a person who is 4

agitated, confused, or unsafe. Your role in the care plan will be described by your neuropsychologist or another member of your team.

• Behavior Attendants: Behavior Attendants are sometimes assigned to a patient to help keep the person safe and provide consistency. The BA may be a Craig employee or from an outside agency.

Safety Devices Sometimes a safety device is used to help keep an individual safe. The nursing team will evaluate the need for these devices on a daily basis.

• Code Alerts: Code alerts are worn by patients to notify nursing staff (by alarm) if the person happens to wander away or leave a safe area.

• Helmets: Helmets are worn to protect the head from further injury. If a person has had a surgery called a craniotomy (removing a piece of the skull) a helmet will be needed.

• Lock Belts: Lock belts are used while the person is in a wheelchair to prevent falling and/or leaving the chair without supervision.

• Mitts: Mitts over the hands can be used to prevent the patient from pulling out medical tubes.

• Camera Monitors: Staff members are able to monitor beds from a remote location. Cameras are typically used during the night shift to ensure the person’s safety, but the monitoring system can be used 24 hours a day. Only “real-time” monitoring is used, no recordings are made or kept on file.

• Specialty Beds: The nursing department uses several kinds of special beds that help keep a person safe. Some of these beds can also be used to reduce stimulation. 

Safe Keeper Bed: This is a special bed configured with high padded sides and is low to the floor. These beds are helpful to individuals who are restless or move around a lot.

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Posey Bed: This bed has a netting enclosure over a regular hospital bed. These beds are helpful for people who are impulsive, memory-impaired, or at risk for falls.

Communication Boards in the Room Communication boards are used to communicate the day and date, names of nursing staff for the day, and other information.

Communication Sheets: One way your team communicates with you and with each other, is by posting information on or near your communication board. This information is to promote safety and consistency.

All family members and staff are asked to follow the information on the sheets. This may include: • Transfer sheet: The transfer sheet outlines the primary way to transfer in and out of the wheelchair to the bed or another chair in the room. Physical Therapy (PT) updates this sheet.

• Bathroom sheet: The bathroom sheet outlines the primary transfer for using the toilet and for showering. Occupational Therapy (OT) updates this sheet.

• ADL sheet: The ADL sheet outlines how much assistance is needed to complete self-care tasks.

OT updates this sheet.

• Splints/Casts/Glasses sheet: The splint sheet outlines schedules for wearing arm and leg splints and casts, and for glasses. OT and PT update this sheet.

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• Swallowing Status sheet: The swallowing status sheet, if applicable, outlines swallowing safety instructions. Speech Therapy (SLP) updates this sheet.

Rehab Team Members and their Roles Clinical Care Manager (CCM) The CCM is your advocate and counselor, and will be the primary contact for you and your family members during your rehabilitation program. The role of CCM is to: • Provide education about brain injury • Provide emotional support and counseling • Evaluate and advocate for your insurance benefits and other funding sources you may be eligible to receive, such as Social Security, Short & Long term Disability, and Medicaid • Develop and coordinate with you and the team a plan for discharge and for care after inpatient rehabilitation • Provide resources and problem-solve issues • Coordinate family support groups Doctor The doctor will have special training in rehabilitation medicine and expertise in brain injury. The doctor is the team leader. The role of the doctor is to: • Plan and coordinate the treatment program in cooperation with other team members • Order and evaluate medications • Order diagnostic tests such as x-rays, MRIs, and other studies • Refer to other specialty doctors for consultation as needed Registered Nurses (RNs) Nursing staff provides 24-hour care and comfort. You will have more than one nurse throughout your stay. The role of nursing is to: • Assess daily health and status • Plan and promote safety • Regulate sleep-wake cycles in consultation with the doctor • Safely administer medications • Prepare and maintain a record of observations and care given • Provide education specific to your needs Rehabilitation Technicians (Techs) and Behavior Attendants (BAs) Techs and/or behavior assistants help carry out the plan of care established by the nurses and therapists.

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Techs and BAs help with daily care needs and safety.

The role of the rehab techs and BAs are to: • Provide personal direct care for patients in collaboration with the therapy team • Help with serving meals and feeding • Help with safety in the room and around the hospital Pharmacist The pharmacist works with the team to evaluate medications. The role of the pharmacist is to: • Work with your doctor to develop a medication therapy plan • Understand and communicate the side effects of medications and their interaction with other medications • Check the outpatient insurance coverage for recommended medications • Help you and your family understand your medication needs and how to manage your medication when you go home • Create a plan for you to get medication when you leave the hospital • Create a plan to lower the risk of mistakes and missing doses at home • Ensure a smooth transition home with your medications Dietician The dietician ensures that optimal nutrition needs are met. Their role is to: • Assist with special food preferences and allergies • Ensure proper nutrition for people with feeding tubes • Evaluate nutritional intakes through calorie counts • Provide individual and group nutrition education Respiratory Therapists (RT) Respiratory therapists assist with all aspects of breathing and restoring good respiratory status. The role of the respiratory therapist is to: • Help keep the airway clear by suctioning • Teach assisted cough techniques • Deliver aerosolized medications to improve breathing • Manage the care and removal of tracheostomy tubes • Provide education and equipment for safe breathing at home Neuropsychologist (Psych) The neuropsychologist helps you and your family with the emotional and psychological aspects of brain 7

injury. The role of the neuropsychologist is to: • Educate about the specific anatomy of your brain injury • Give and interpret specialized testing to evaluate cognitive abilities, strengths, impairments, and treatment • Help with neurobehavioral treatment and planning • Give objective information about competency, ability to live independently, and ability to return to work • Provide emotional support to you and your family Neurobehavioral Rehabilitation Coordinator (Behavior Specialist) The Neurobehavioral rehabilitation coordinator assists patients and families in receiving specialized and consistent care around behaviors. The role of the neurobehavioral rehab coordinator is to: • Support staff in relation to implementing behavior programs • Educate families around specifics of a behavior plan • Take and analyze pertinent data to assist in patient care • Provide insight into how environmental variables may impact behavior • Give objective information about rates of behavior, frequency and general trend Physical Therapist (PT) The physical therapist works to help you improve safe movement. The role of the physical therapist is to: • Evaluate and treat: ◦Movement, balance and coordination ◦Strength and endurance ◦Wheelchair use and walking, if appropriate • Help obtain equipment such as wheelchairs, cushions, walkers or canes, beds and/or lifts.

• Advise on how to prepare your home environment for safe movement.

• Coordinate other therapies that will help with movement, to include: ◦Exercise groups and classes ◦Pool therapy ◦Locomotor training Speech-Language Pathologist (Speech) The speech-language pathologist helps to improve language and communication abilities, thinking skills, and the ability to safely swallow foods/liquids. The role of the speech-language pathologist is to: • Evaluate and treat: 8

◦Swallowing and consistency of food/liquids and/or strategies to ensure safe swallowing ◦Language and communication abilities including expressing yourself through speaking and writing and understanding what your hear and read ◦Thinking skills necessary for daily interactions ◦Hearing abilities • Provide education and support for thinking, communication, and swallowing abilities • Evaluate the need for assistive technology for speaking or communicating Teacher Licensed teachers are available to help high school-aged patients stay current with some school work and transition back to school when appropriate. The role of our teachers is to: • Communicate with school personnel • Help students complete assignments sent by his or her school • Help coordinate school-related issues and assignments with the rehab team • Make recommendations about special services that might help when a student goes back to school Occupational Therapist (OT) The occupational therapist works on daily living skills, the ability to coordinate movement, and thinking skills to re-learn functional daily tasks. The role of the Occupational Therapist is to: • Evaluate and treat: ◦Self-care skills (dressing, grooming, feeding, toileting, showering) ◦Arm function ◦Vision skills ◦Thinking skills in your daily activities ◦Help you get appropriate bathroom equipment and other daily living equipment • Help with your daily routine in the hospital and after discharge • Plan for transportation needs including a return to driving • Support your assistive technology needs • Support the process of returning to work and productive activities as needed. ◦Coordinate referrals to community reintegration and adaptive driving specialists as appropriate Community Reintegration Program Community reintegration is a program designed to facilitate a return to productive activity outside of the hospital. This service is usually provided after the inpatient stay; however, it can be started during inpatient if recommended by the rehab team. The role of the community reintegration specialist is to: • Provide recommendations and resources for return to work, school, and other productive activities 9

• Perform return to work assessments, address worksite accessibility, and provide support for return to work and/or school See section 6 for more information Adaptive Transportation Specialist Adaptive transportation is a program designed to help with transportation and return-to-driving needs after the hospital stay. The role of the Adaptive Transportation Specialist is to: • Provide information about and exposure to adapted vehicles • Perform driving assessments if/when recommended by the team, usually after the inpatient stay See section 6 for more information Certified Therapeutic Recreation Specialist (CTRS/T-Rec) The therapeutic recreation specialist uses recreation and leisure interests to address therapeutic goals and provide community integration opportunities. The role of the Therapeutic Recreation Specialist is to: • Assess recreation interests • Provide one-on-one therapy and/or work together with other therapists on therapeutic goals • Provide therapeutic outings to practice skills outside the hospital • Help structure free time • Coordinate programs that enhance rehabilitation, such as: ◦Pet Therapy ◦Horticultural Therapy ◦Aquatics • Provide education and support to select/adapt recreational activities for every stage of recovery.

Music Therapist (MT) The music therapist uses music to address a wide range of therapeutic goals. The rehabilitation team will recommend this service if appropriate. The role of the music therapist is to use music to help with: • Arousal/attention, memory, or decision making • Getting movement in the hands, arms, and legs • Walking • Voicing, breath support, speech, articulation • Reducing pain • Increasing motivation • Returning to playing an instrument

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Chaplain For those interested, the chaplain assists people of all faiths and those with no religious affiliation, in the following ways: • Offers spiritual and emotional support to cope with life changes • Holds weekly religious services in the chapel • Connects people with community spiritual resources

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The Craig Hospital Brain Injury Program Section II: About the Brain (This chapter provides information about the brain and brain injuries.)

The Uninjured Brain The brain is surrounded by skin, bone, layers of tissue, and fluid, which keeps the brain protected and nourished.

The brain is protected by the skull, which is made of hard bone. The skull shields the brain from mild blows to the head, but it cannot protect the brain from greater impacts, such as those that result from falls or high-speed traffic accidents.

Inside the skull, the brain is surrounded by three membranes, or thin layers of protective tissue, called meninges. The meninges cover the spinal cord and the brain. A clear protective fluid, called Cerebrospinal

Figure 2.1

Fluid (CSF), circulates between the meninges and around the brain and spinal cord. CSF acts like a cushion to absorb the vibrations of normal body movement and the shock of minor injuries.

As added protection, the brain is very well nourished by a complex vascular system of arteries and veins. Because the brain cannot store food, blood continuously provides the brain with oxygen and nutrients/energy. Even though the brain is 2% of our body weight, it requires 20% of our metabolic demand (energy). After brain injury, the energy our brain needs increases.

Underneath all these protective structures, the brain itself looks something like a wrinkled walnut and has the consistency of firm Jello™. Although the brain weighs only about three pounds, it is the most highly organized structure we know.

The human brain has been studied for centuries, but much of how it works remains a mystery. The brain and spinal cord make up the central nervous system, which coordinates all the functions of the body. The brain is the center for receiving, processing, and sending information. The spinal cord connects the brain with the body and passes messages back and forth between the two.

The brain is made up of 80 to 90 billion nerve cells called neurons as well as supporting nerve cells, such as glial cells and astrocytes. These neurons, which connect with one another via trillions of threadlike connections, make up the brain. Neurons transmit electrical-chemical signals within the brain and between the brain and body. These connections receive information through our senses from the outside world, process the information, and then send messages to other neurons and to other parts of the body; thus, creating our sense of self awareness, memories, desires, and plans for the future.

The simplest actions require a complicated chain of messages.

As you read this page, neurons are transmitting signals back and forth in your brain and through your spinal cord.

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Figure 2.2

As your eyes move across the page, signals go to your brain about the size, shape, and arrangement of the letters you are reading. The brain has stored reading information and retrieves these memories so that the letters you are looking at make words, sentences, and ideas. Your brain allows you to understand and remember what you have read.

Figure 2.3: Neuron

While you are reading, neurons in your brain will take care of other things as well – such as keeping your heart rate and blood pressure at the desired rate, letting you move the page so the light hits it better, or telling you to move your body slightly so that you are more comfortable. The brain makes this communication possible.

Parts of the Brain Although we refer to the brain as one organ, it is made up of several parts. Each part is responsible for certain functions and some functions are also shared. There are three major parts of the brain: • The brainstem is the lowest part of the brain and controls automatic functions like blood pressure, heart rate, breathing, alertness, swallowing, and eye movements.

Damage to the brainstem can be life threatening.

• The cerebellum is responsible for balance, helping you know how the body is positioned, and to coordinate and control muscle movement.

• The cerebrum is responsible for all thinking and emotional processes as well as basic vital functions.

The deep inner structures of the cerebrum are involved with basic vital activities such Figure 2.4 as controlling blood pressure, heart rate, and body temperature; staying awake and alert; and monitoring thirst, hunger, and sexual behavior.

The outer layers of the cerebrum are called the cerebral cortex. This is the part of the brain that gives us the ability to think, communicate, remember, and feel emotions – all the things that make us human.

The cerebral cortex is divided into two halves, called the right and left hemispheres. The right hemisphere controls the left side of the body, and the left hemisphere controls the right side of the body. Each hemisphere is divided into four sections, called lobes: the parietal, frontal, occipital, and temporal lobes. The neurons in each lobe are responsible for different functions. Although every brain is different, the picture below shows the lobes and lists general functions: Everything we do requires different parts of the brain to work together. For example, while driving a car the neurons in all the lobes of the cerebral cortex work together to make your trip safe. As you drive along, you are constantly seeing things you must interpret – road signs, traffic signals, and the movement of other cars. These are all processed by neurons in your occipital lobes. Neurons in the temporal lobes are responsible for processing the sounds you hear, such as honking horns or sirens.

The temporal lobes also contain the largest center for memory, allowing you to remember the route you need to take. Neurons in the parietal lobes help you interpret what you’re touching (Am I controlling the steering wheel? Is the road bumpy or smooth?) Finally, neurons in the frontal lobes help you make judgments (Am I too close to the car in front?), to plan ahead (Should I turn right at the next corner?), to make decisions (Should I pass the car ahead?), and to take action (I must move my car into the left lane to pass).

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Figure 2.5

All of these functions work together and at the same time. In most activities of daily life, your brain is constantly performing at least three important activities: 1. Receiving and interpreting sensory information.

2. Communicating information among different parts of the brain.

3. Sending motor commands to the muscles.

Types of Brain Injury Damage to the brain can occur in many different ways. The damage can be caused by something internal, like a stroke or a disease, or something external, such as a fall, a gunshot wound, or a car accident.

This section will be reviewing general information about traumatic brain injury (TBI) and stroke.

Sometimes both of these injuries can happen together.

Facts about Traumatic Brain Injury and Stroke • As of 2015, 2.5 million people in the US sustain a TBI every year • It’s estimated that 5.3 million Americans live with a long-term disability as a result of TBI • Males are more likely than females to sustain a TBI • Individuals ages 0 - 4, 15 - 19, and age 75 and above are most likely to visit the ER or be hospitalized for TBI • 75% of traumatic brain injuries are classified as mild • Every year, about 795,000 individuals in the US have a stroke and about 610,000 of these are first or new strokes.

• Stroke is the 5th leading cause of death in the US 14

A brain injury affects each person differently. Because the brain controls how people think, feel, and act, an injury can change many different things about a person. The effects of a brain injury may vary greatly from person to person.

How Traumatic Brain Injury Happens An outside force to the head causes traumatic brain injury (TBI). That force can be small, like being hit in the head by a ball, or it can be a powerful force, as in a high-speed car accident. The force can fracture the skull or there may be no outward sign of injury at all. TBI results in two main types of injury to neurons: diffuse and focal. These types of injuries can occur together.

What exactly happens inside the brain? Outside forces cause the brain to move around inside the skull.

This causes neurons – the cells responsible for all of the brain’s communication – to be damaged.

The damage can be caused by the trauma itself, such as by tearing, shearing, or bruising. Damage can also occur when the neurons are deprived of blood, which brings them the continuous oxygen and nourishment they require. When the damage is severe enough, neurons will die. In fact, without oxygen, neurons can begin dying after 8-10 minutes.

When a neuron is injured, a communication circuit in the brain is disrupted or broken. If the damage is severe, many neurons can die causing circuits to be disrupted. Even if neurons recover, this recovery can take a long time. Sophisticated tests like an MRI or CT scan cannot answer prognostic questions – they can tell the physician where in the brain the damage has occurred, but they cannot predict outcome.

Diffuse injury Diffuse injury causes widespread, microscopic damage throughout the brain. When the skull does not fracture this is called a closed head injury. This type of injury most frequently occurs from car accidents and falls.

To understand how a diffuse injury occurs, imagine what happens when the head is vigorously shaken, or hits a solid object, such as a dashboard: • Upon impact, the head twists on the neck. This causes the brain to twist or rotate inside the skull, since the brain is not attached to the skull.

• Inside the brain, this rapid rotation stretches and tears neurons and their connections (shearing).

• Microscopic areas of bleeding and damage occur throughout the entire brain.

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Diffuse injuries produce more damage to the deep, inner parts of the brain. Damage to these deep inner parts can cause loss of consciousness, since those deeper structures of the brain are responsible for keeping us awake and alert. Coma may occur, which is a state of unconsciousness that lasts for more than a brief period of time. During this period, a person cannot be aroused and does not respond to commands. Please see section 3 for the Levels of Cognitive Function, which describe the stages of consciousness.

Changes Resulting from Diffuse Injury Diffuse brain injury affects neurons and their connections throughout the brain. An individual with a severe injury can have challenges with several brain functions, including those below. The severity of these changes and how long they last vary from person to person.

• Movement • Sensation • Memory • Communication • Thinking processes: paying attention, reasoning, and using good judgment • Behavior • Emotion

Figure 2.7

Focal Injuries A focal injury is localized—producing damage to neurons in one or more specific areas of the brain.

Some traumas that might cause focal injury include gunshot or knife wounds, or blows to the head that are hard enough to fracture the skull and force pieces of the skull into the brain. However, focal injury can also occur even if the skull is not fractured.

Sometimes a person can have a focal injury and diffuse injury at the same time This can happen when the brain slides and moves inside the skull (diffuse injury) and is also torn by scraping against the rough inside surface of the skull, causing bleeding to occur in specific areas (focal injury).

In a car accident, focal injury can result from what is called coup/contre-coup, which is French for “blow/opposite blow.”

Coup occurs when the brain hits the inside of the skull as the head strikes a solid object, like a dashboard (see picture at left).

Contre-coup happens when the brain rebounds and hits the opposite side of the skull. Coup/contre- coup produces bruising and bleeding in both these areas of impact. Falls are also a common cause of coup/contre-coup injuries.

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Figure 2.8

Focal injury can also be caused by non-traumatic conditions such as strokes, brain tumors, and ruptured blood vessels.

In these cases, blood vessels become blocked or damaged, and neurons in a specific area of the brain do not receive the oxygen they need.

Figure 2.9

Changes Resulting from Focal Injury.

Because areas of focal damage are specific, the problems that result are somewhat predictable; however, every brain is different. For example, we know that the left side of the brain controls the right side of the body, and the right side of the brain controls the left side of the body; Figure 2.5 (above) shows the different parts of the brain and what they do.

As the person comes out of the coma and begins to recover, the effects of any focal injury or injuries to specific parts of the brain may become more obvious.

In general, the frontal and temporal lobes are the most frequent sites of focal injuries.

Anoxia and hypoxia are injuries to the brain that are caused either by a lack of oxygen or a decrease in oxygen to the brain. These can result from a cardiac arrest/heart attack, carbon monoxide poisoning, near-drowning, and other causes.

Ischemia is a lack of blood flow to all or part of the brain and because it is the blood that carries oxygen, ischemic injuries can lead to oxygen deprivation (hypoxia).

Certain areas of the brain are more sensitive to lack of oxygen and may suffer more damage. The problems that result from mild hypoxia or ischemia are impaired shortterm memory, difficulty with complex learning tasks, and speed of processing. More severe hypoxic or ischemic injury will impact motor control.

Figure 2.10

How a Stroke Happens A stroke is a change in blood supply to the brain. This is an emergency, just like a heart-attack, and medical help is needed right away. Risk factors associated with stroke include: genetics, age, gender, ethnicity, high blood pressure, high cholesterol, heart disease, diabetes, weight, and previous stroke.

Some of these risk factors can be controlled, while others cannot.

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There are two types of stroke that can occur independently or together: Ischemic stroke: occurs when blood flow through an artery in the brain becomes blocked or partially blocked by plaque on the wall of the artery or by a blood clot.

Hemorrhagic stroke: occurs when a blood vessel in the brain bursts, bleeds, and causes rapid pressure changes in the brain.

Figure 2.11

Warning Signs of a Stroke: BE FAST • Balance: Sudden unexplained dizziness, unsteadiness or sudden falls, especially with any of the other symptoms.

• Eyes: Sudden vision problems in one or both eyes.

• Face: Numbness and tingling or weakness of the face, usually on one side, or sudden, severe headache with no apparent cause.

• Arms: Numbness and tingling or weakness of the arms, usually on one side.

• Speech: Sudden change in speech or understanding, or seeming confused.

• Time: If someone shows these signs, contact emergency services right away. Brain is time.

Please see the “Changes Resulting from a Focal Injury” section above for additional information.

Secondary Neurological Problems Neurological problems happen in the nervous system – the brain, spinal cord, and nerves of the body. Neurological problems happen with the initial injury. Additional problems, called secondary neurological problems, happen after the injury and cause further damage to the brain. Below are some of the most common secondary neurological problems, their causes, and treatment.

Elevated Intracranial Pressure The brain swells after injury, like any other part of the body. Since the brain is surrounded by a hard skull, there is no extra room for this swelling. This causes an increase in pressure and can cause more damage. Various treatments such as the use of a ventilator, certain medications, or surgical procedures may be used to decrease pressure.

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Hematoma A hematoma is a collection of blood that presses on the brain and may cause more damage. The seriousness depends on the hematoma’s size, location, and rate of growth. There are three places a hematoma can form: • Epidural: when an artery bleeds quickly between the skull and brain outside of the dura mater (the outer layer of the meninges, the protective covering of the brain).

Burr Holes

• Subdural: when a vein bleeds slowly between the skull and brain inside the dura mater.

• Subarachnoid (Intracerebral): when bleeding takes place inside the brain.

In life threatening situations, hematomas may be treated by surgery. Surgery can be done by drilling small holes, called burr holes, in the skull to let the blood drain out. A craniotomy can also be performed. This involves removing a piece of skull to let the hematoma drain, thus reducing pressure on the brain.

Figure 2.12

Subdural Effusion A subdural effusion is caused by a collection of fluid between the brain and skull. This usually resolves on its own, but may require surgery to drain.

Hydrocephalus An abnormal collection of cerebrospinal fluid (CSF) can build up around the brain and within the brain’s ventricles. CSF is the clear fluid produced within the brain that cushions the brain and spinal cord. The ventricles are spaces inside the brain through which the CSF circulates. Hydrocephalus may occur if the normal flow of CSF becomes blocked and the ventricles fill up with the fluid and create pressure.

Hydrocephalus can damage brain tissue and can cause increased confusion, sleepiness, slower than usual responses, spasticity or seizures.

When hydrocephalus causes too much pressure, it may be treated with surgery. This surgery involves the insertion of a tiny tube called a shunt to drain the fluid from the ventricles into another part of the body that can absorb it such as the abdomen.

Seizure Activity During normal brain activity, electrical signals are constantly passing back and forth between brain cells. During a seizure, an electrical abnormality occurs in part or all of the brain. This may cause: • Confusion • Hallucinations (seeing or hearing things that are not there) • Strong emotions • Muscle contractions • Loss of consciousness

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Why It is Important to Learn about Seizures?

There is an increased risk of seizures for people who have had a brain injury. Different types of injuries have different seizure risks. Sometimes seizures start immediately after the injury. Other times they may not happen until many months or even years later. Even a mild BI can result in seizures. Typically, the more severe the BI, the greater the risk of having seizures. You should discuss your risks and treatments with your doctor.

Not every seizure looks the same. People who witness seizures can mistake them for other medical problems. Some seizures can lead to further brain injury. Other injuries that could occur include: tongue bite, falls, and even death. Seizures can be effectively managed by you and your health care provider. Learning to recognize and respond to a seizure when it does occur is important.

In the next section you will learn more about specific consequences of brain injury.

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The Craig Hospital Brain Injury Program Section III: Consequences of Brain Injury This chapter describes some of the changes a person might experience after brain injury, as well as suggestions for what you can do to help.

Medical Issues Associated with Brain Injury (BI) A variety of medical issues can occur after BI. Some of these issues are listed below. It is possible to experience some, none, or several of these.

Autonomic Problems The autonomic nervous system controls many activities that take place automatically such as: breathing, blood pressure, heart rate, and temperature regulation. If the system isn’t working properly, a person may experience blood pressure changes, irregular breathing, and unexplained fevers.

Bladder Control A BI may interfere with messages between the brain and bladder. The person may not know when to urinate or may not be able to control starting or stopping urination. This results in leaking of urine, called “incontinence.”

Incontinence can be upsetting or embarrassing. The nurses will set up a toileting schedule to help regain bladder control. A toileting schedule involves being taken to the toilet every two hours during the day and evening. At night, nursing will do something different to avoid waking a person multiple times.

If controlling the bladder is especially difficult, the physician may have a catheter inserted. A catheter is a tube that goes inside the bladder and connects to another tube and a drainage bag. This drains the urine out of the bladder and into the bag. Using a catheter while the brain is healing decreases stress and allows energy to focus on other aspects of recovery.

Blood Clots Injury and lack of movement can lead to blood clots in the arms, legs, and lungs. Some people may also have changes in the blood’s clotting ability. A blood thinner medication may be needed to help prevent or treat blood clots.

Breathing The breathing center of the brain may be affected, resulting in difficulty breathing without assistance or at a regular rate. A tracheostomy (trach), may be needed. This will help with breathing and help nursing and respiratory clean and remove secretions. If someone cannot breathe on their own, a mechanical ventilator or vent may be required to regulate breathing.

Digestive System and Bowel Management BI can affect the digestive system in several ways. The brain may send confusing messages to the 21

muscles that control swallowing. This may make it harder to eat and easier to choke on food and liquids. (Please refer to the section on Swallowing for more information).

BI can make it hard to recognize when it’s time for a bowel movement. This can cause a bowel accident or involuntary bowel movement. The rehab team – especially nursing – will work to re-train the bowel, establish bowel control, and create a bowel program that will work for the individual.

Bowel re-training may involve making sure bowel movements happen at the same time each day. This may include: • Establishing a daily bowel management routine • Suggesting changes to a person’s diet (teaching how much and when to eat and drink, and figuring out which foods help the bowels, and which do not) Heterotopic Ossification (HO) HO is a condition where extra bone forms in the soft tissue around a joint. This sometimes happens after a BI when a person is not able to move around as much. HO can decrease range of motion, flexibility, and cause pain. If HO is in the hips or legs, it can make it hard to sit comfortably. If located in the arm, HO makes it hard to eat, brush hair, bath, or get dressed. The physician will determine if medication could be helpful.

Hormones Certain areas in the brain control hormones. If these areas are injured, a person may experience excessive thirst, hunger, frequent need to urinate, or changes in social behavior. In females, menstruation may stop temporarily, but will usually return within 6 months to one year.

Liver Function The liver changes food and medications into a form the body can use. Problems can develop if the brain doesn’t direct the liver properly. Liver function may be monitored with blood tests.

Nutrition Acute BI often causes greatly increased metabolism and protein needs. It is important to get adequate nutrition to prevent muscle wasting and improve overall outcomes. Good nutrition helps to fight infections and maintain strength. A feeding tube may be necessary if swallowing is unsafe. The tube can be inserted through the nose to the stomach, or surgically placed in the stomach to deliver food, water, or medications. Feeding tubes do not have to be permanent and can be removed when no longer needed.

Seizures BI can increase the risk for seizures. Seizures may look different depending on the area of the brain that is injured. (See Section II: About Brain Injury). Some symptoms or signs of a seizure include uncontrolled movements (twitching, eye rolling, shaking of hands, feet or eye blinking), sudden changes in emotions, or they may stop engaging with their surroundings (staring into space or not responding to you). The physician can discuss how to treat them and prevent them from occurring.

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Skin Care Inactivity and body chemistry changes may lead to skin problems such as acne, rashes, or dandruff.

These can be treated with medications. Lack of movement, lack of sensation, or being wet all increase the risk for skin breakdown and sores. The nursing staff will provide education on how to prevent skin breakdown by turning in bed, shifting weight while up in a wheelchair, and having good nutrition and hygiene.

Behavioral and Social Changes Many people notice changes in personality and behavior after a brain injury. Self-awareness and control over behavior may be impaired. There can be a lack of inhibition, or disinhibition, not being able to inhibit impulses. Cognitive difficulties can also affect behavior.

Behavior changes are different for each person. These changes may include: saying things without thinking; using profanity; talking too loudly or too much; not initiating or completing tasks; doing things that may be harmful to oneself or to others; or damaging property.

The most frequent behavioral changes involve how one interacts with other people. Changes in social behavior can take many forms, including but not limited to: • Not following usual social rules in a situation • Ignoring social boundaries by touching people or standing too close to someone • Saying or doing anything that comes to mind; not considering the consequences • Interrupting; not taking turns; not listening to others; or not responding in a way that fits the social situation • Getting stuck on a particular idea or activity • Not being able to get started in an activity or conversation • Having difficulty adjusting to change, being inflexible • Focusing on oneself; not seeing other points of view • Having difficulty understanding non-verbal cues: for example, being unable to tell that his or her behavior is making others feel uncomfortable The individual may be less aware of how their behavior is coming across, and how others are responding.

This can make it hard for the person to adjust or correct behavior.

What You Can Do ◦Allow for scheduled low stimulation breaks throughout the day. Reducing fatigue can minimize challenging behavior. ◦Simplify the environment. Interruptions and distractions should be kept to a minimum both in and out of therapy sessions. ◦Give encouragement to “stop and think”. ◦Give simple, concrete instructions. Write them down in simple terms or demonstrate them with visual or verbal prompts, such as gesturing.

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◦Provide simple and focused choices. For example, instead of saying “what do you want to do?” you could say “do you want to do X or Y?” ◦Help to problem-solve by writing the options down on paper and discussing the pros and cons. ◦Give clear, consistent feedback. When a behavior does not seem to be best for a situation, suggest alternate behaviors. When behavior fits well in the situation, give positive feedback. ◦When possible, ignore challenging behaviors and redirect to a meaningful task. Stay calm to maintain a non-threatening or non-confrontational environment. ◦Behavior may change throughout the day. Try not to take the behavior or actions personally. ◦Behavioral and cognitive changes are connected. It might be helpful to read the Cognitive Changes section later in this chapter.

The team will try to help modify behavior and address social difficulties. If needed, a plan may be developed to give everyone on the team a consistent way to encourage successful behavior and social interactions.

Perseveration Perseveration is when someone repeats a word, phrase, or idea over and over. It is as if the person’s thought process is stuck. Think of when a CD gets a scratch and plays the same tune over and over.

This can make it hard to switch from one task or topic to another.

What You Can Do ◦Redirect and introduce a new topic to think about. For example, put on music or encourage singing aloud. ◦Introduce a pleasurable task that is reinforcing. Go outside, prepare a meal, fold clothes, or anything that is a pleasant change.

Mood Changes Brain injury can also impact mood or affect (how a person expresses themselves through facial expressions, gestures, and tone of voice).

Emotional Lability is the loss of emotional control caused by the injury. Emotions may be extreme for a particular situation, or may change very quickly for little or no reason. This may include exaggerated laughing or crying.

What You Can Do ◦Change the subject or divert attention, if possible. ◦Remain calm and confident. Keep a “matter of fact” attitude. ◦Ignore emotions that are not appropriate for the social context when possible. Ignore the behavior; not the person. Providing comfort after an outburst of crying may make it more likely to happen again.

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◦ Find a quiet place to allow time to calm down and regain control.

Depression is a common symptom and may emerge at various times after injury. This may be caused by changes in brain chemistry triggered by the trauma. The person may also experience sadness or frustration because of the situation and injury related challenges/changes. Talk with the Physician, Neuropsychologist/Psychologist and counselor/CCM if you feel depression may be a problem. They can direct you to available treatments, including counseling and medications, and to resources in your community for when you return home.

What You Can Do ◦Watch for changes in behavior patterns. ◦Be supportive of your family member if he or she wants to talk. Ask the psychologist or counselor for suggestions on ways to provide emotional support. ◦Listen for comments about being unhappy with quality of life, or direct (or indirect) references to suicide. Suicide risk increases after brain injury. Let the team know about these comments.

Fatigue Fatigue means feeling exhausted, tired, weary, or listless. It is common to experience some kind of fatigue after a brain injury; including physical, psychological, and mental fatigue. For some, fatigue makes it hard to go back to work, do the things that were enjoyable before, or even take care of themselves. Fatigue, especially mental fatigue, can create problems long after most other brain injury symptoms have resolved including making other brain injury symptoms worse. Fatigue from brain injury cannot simply be overcome by “pushing through it”.

Physical fatigue can come from muscle weakness. It can result from having to work harder to do things that were easy before the brain injury even routine things like dressing, working around the house, and walking. Physical fatigue can get worse after an intense activity or a busy day. After a good night of sleep or rest breaks, fatigue tends to lessen. Usually, this kind of fatigue improves over time, as the individual gets stronger and builds endurance.

Psychological fatigue is fatigue that comes with depression, anxiety, and other psychological conditions.

This kind of fatigue can get worse with stress. Often, sleep does not help at all. Psychological fatigue can even be worse in the mornings. The Physician and Neuropsychologist/Psychologist can help find the cause(s) and make recommendations.

Mental or cognitive fatigue is very common after BI. Individuals may describe this as “my brain is tired.” Mental fatigue may cause slowed thinking. Routine tasks can require more concentration and effort than they did before the injury. Focusing on several things at one time may be hard. Noise, excess stimulation, and activity can make the fatigue worse. Tasks that are easy in a quiet room, or in a structured therapy session may be more difficult in a busy restaurant or a mall.

Brain injury can require more concentration to do tasks that were easier before the injury. Just like hard physical work is tiring, hard mental work is tiring too. Signs of cognitive/mental fatigue may include: • Increased distractibility, trouble staying focused, or becoming disorganized • Increased irritability and frustration • Slower thinking and reaction times 25

• Blurred vision • Problems with balance • Headache • Trouble speaking and talking What You Can Do ◦If fatigue is from psychological causes, like depression, anxiety, or other psychological conditions, talking to the Physician and Neuropsychologist/Psychologist can be helpful.

Treatment may include counseling and/or even medications. Don’t wait: It is possible to get help for psychological fatigue and feel better. ◦If you think the fatigue is Physical or Cognitive, try the suggestions below.

--Encourage sleep and rest Insomnia or sleep apnea can be problems after brain injury.

If you suspect either of these problems affects sleep, tell the Physician.

--Re-arrange schedules. Activities that require the most physical or mental “strength” should be done earlier in the day when there is more energy reserve.

--Allow time for rest breaks during the day.

--Set up an exercise program with guidance from the team. Begin slowly and gradually increase activity and workouts.

--Eat a balanced and nutritious diet. Drink plenty of water.

--Limit extra stimulation. Turn off the TV and limit other distractions.

--While the injury is new, it is helpful to limit the number of visitors at a time.

Sexual Changes Sexuality is an important part of being human. It is part of our personality, attitude, and self-expression.

Sexuality is personal and unique; it involves intimacy, affection, tenderness, companionship, and sexual activity.

Brain injury can affect the way sexuality is experienced and expressed. These are some of the changes that can happen: • Sex drive - the amount of interest in sex - can increase or can decrease.

• Sexual functioning can change. For example, men may have difficulty with erections. Both men and women can have more trouble reaching orgasm.

• BI can decrease inhibition. This can cause an increase in thinking about or talking about sex or doing more sexual things than before the injury. Overall, thoughts, comments and actions about sex may be less private than before injury.

• Other side effects of brain injury can cause sexual problems: ◦Depression, anxiety, and stress can reduce sex drive. ◦Experiencing loss of confidence and feeling less attractive.

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◦Some medications can affect the desire or ability to have sex. Ask your physician or pharmacist if any medications might do this. ◦Fatigue may affect sexual activity and desire. ◦Other injuries or illnesses, like broken bones or damage to internal organs, can affect sexual functioning. ◦Changes in family roles can also affect intimacy. Partners may find that they now have to help with personal care and/or supervision. This can change how both you and your partner feel about sex and can lead to difficulty with intimacy.

Sexual changes can be uncomfortable or embarrassing – for either party, especially if they are not familiar with brain injury. It may be helpful to talk about sexual changes with the Neuropsychologist/ Psychologist or Physician.

What You Can Do ◦Usually the best time to re-start sexual activity is after returning home, where things can be more comfortable, relaxed, and private. Your Physician or Neuropsychologist/Psychologist can make suggestions to help things go better the first time. As great as sex can be, it can also be a little scary after an injury or illness. ◦Intimacy requires trust and open communication. Be honest when talking to your partner.

Make sure both individuals have the chance to express needs and concerns, and to listen carefully to the other person. Discuss expectations, fears, and feelings.

Suggestions for resuming sexual activity • Remember to follow the team’s recommendations about getting enough rest.

• Plan and set aside time for sexual activity. Work together to set the mood or create a romantic environment.

• Be open to change. Sex may be different, but that doesn’t mean it will be bad. Like many other skills, sexual skills may need to be practiced and re-learned. You may need to experiment a little.

• Be patient with yourself and partner. Just like walking, talking, and remembering, sex can improve over time.

Communication Problems Communication involves the exchange of ideas through spoken or written language, gestures, numbers, or a combination of these. Communication problems are closely related to thinking or cognitive problems.

We use communication in all aspects of life. The Speech/Language Pathologist (SLP) addresses communication and cognition. However, all members of the team work together to improve these skills.

Breaking down the communication process into steps shows how complex it is, and how much thinking is involved. Communication requires: • Being alert enough to receive information from others.

• Paying attention and concentrating on information.

• Remembering the information in the right order.

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• Understanding the meaning of the information, and how it relates.

• Organizing responses, thoughts and feelings.

• Transmitting responses through speech, writing, or gestures.

Speaking and Voice Problems Speech refers to the way sounds are formed as we coordinate our breathing, voice, and the movement of our mouth, lips, and tongue.

Speech problems may be due to weakness or poor coordination of the tongue and lips, weak breath capacity, and/or changes to the vocal folds. Apraxia refers to the loss of ability to program motor movements, such as the movements required to talk. Although muscles are capable of moving, the muscles have trouble responding to signals sent from the brain. For someone with apraxia of speech, saying a word when asked to do so may be difficult. For example, if you ask the individual to say the word “bathroom”, they may not be able to; however, they may say it a few minutes later without thinking about it when they need to use the bathroom. Dysarthria is difficulty speaking because of changes to muscle function. Speech may sound slurred and difficult to understand.

Some individuals have a tracheostomy tube (trach) placed in their trachea or windpipe. This is done to help them breathe. When the trach is open (does not have anything covering it), they are unlikely to have a voice. This is because air coming from their lungs flows out of the tube and does not flow through the vocal folds. The trach does not prevent them from being able to “mouth” words. As they become closer to being able to breathe on their own, a speaking valve and/or cap may be used to allow the person to “turn on” their voice. It is very important to follow the medical team’s recommendations during this process. Talk to your SLP to learn more about a tracheostomy tube and its impact on speaking.

What You Can Do to Help ◦Ask the SLP if there are strategies that can make communication easier. ◦If needed, encourage use of simple words and short phrases, and slowing down for better understanding. ◦Try to not rush conversation. ◦Ask for a different word that means the same thing, rather than asking the person to repeat over and over. ◦Encourage the use of gestures, communication boards, or writing on paper.

Language Communication can be challenging because of cognitive or thinking problems. Communication difficulties may also from damage to areas of the brain involved in understanding language, speaking in full sentences, coming up with words, and/or repeating words they hear. A loss of the ability to use language is called aphasia. A person with aphasia may have difficulty talking, writing, or understanding what they hear and read, depending on the nature of their injury. It may be difficult to think of the correct words to say and speech may lack clarity. For some, this may mean they can only say or understand a few words. For others, this may mean that they may say a lot of words but they are the wrong words or not even real words. Writing may also be impaired because, like talking, it requires the use of language. Keep in mind: having aphasia does not mean loss of intelligence. Aphasia is a bit like trying 28

to communicate in a foreign country where you can only say and understand a few words. Sometimes people understand a lot of what is said to them, or sometimes they understand very little.

Signs of language difficulties include: • Difficulty following commands • Difficulty answering yes/no questions • Trouble understanding long or abstract information • Using wrong words in place of others, using words that make no sense, or difficulty finding the right words. Difficulty understanding the meaning of something he/she reads • Difficulty putting words together to make sentences • Difficulty writing and/or spelling words • Saying things that don’t have very much meaning or that don’t make sense What You Can Do ◦Use simple or familiar words. Speak in short but normal sentences. ◦Use gestures and/or written words too. This may help increase understanding. ◦Pay attention to facial expressions and body language and what they communicate. If someone has difficulty understanding what is said to them, they may have to rely on body language and facial expressions to understand what is happening. ◦Ask the SLP to show you strategies to help the individual communicate.

Thinking and Cognition Difficulties with thinking, understanding, remembering, and processing information are called cognitive difficulties. Cognitive difficulties are common after brain injury.

Cognitive skills build on each other, like building blocks. Learning new information requires being alert, oriented, and able to pay attention, and then to remember what was learned. The information can then be used to perform other activities such as organization, reasoning, and decision making.

Post-traumatic Amnesia (PTA) or Post-traumatic Confusional State (PTCS) is the period of time after a BI when arousal, awareness, and attention are impaired. During this time it is challenging to focus attention or remember any new information. This period of disorientation or confusion can be the result of symptoms related to the injury of the brain itself, medications, and/or healing and recovery.

Improvement beyond this state represents an important milestone in the rehabilitation process. Staff will track PTA and will note when this period of time ends (i.e. emerging from PTA). Knowing where you are, what day it is, and the events that led up to being at Craig are all signs of emerging from PTA. This is called orientation.

Signs of confusion and disorientation include: • Mixing up times and tasks throughout the day • Difficulty remembering routines and daily activities 29

• Confusing past and present events • Trouble knowing the correct date, situation, and/or location • Trouble recognizing people • Difficulty remembering things about themselves, such as age, relationship status, etc.

What You Can Do ◦Orient the person frequently. For example, give a reminder: “You are at Craig Hospital; you had an injury; it is June.” You may even need to remind them of what year it is. ◦Give the correct information; do not quiz the person. ◦Encourage the use of their planner to write in daily activities. Refer to the planner yourself throughout the day. ◦Help keep a consistent routine of tasks and activities. Avoid changing the routine as much as possible. ◦Provide simple explanations of what you are doing and why.

Arousal and Attentional Changes Arousal and attentional changes may occur, including difficulty waking up, staying awake, and responding to information. These types of arousal problems can be challenging. Sometimes medications are used to increase somebody’s alertness.

Once alert, it can still be hard to stay focused or attentive. Sustained Attention is being able to focus on one task, even briefly. Selective Attention is the ability to tell the difference between two or more things and decide to focus on one while “tuning out” or filtering the other(s). Divided Attention is the ability to focus on more than one task at the same time.

Signs of attention difficulties include: • Being easily distracted • Difficulty attending to more than one thing at a time; problems with multi-tasking • Restlessness and periods of agitation • Difficulty initiating and/or maintaining eye contact while having a conversation • Difficulty staying on topic during a conversation What You Can Do ◦Focus on one task at a time. Avoid making abrupt changes in activity or topic. ◦Maintain eye contact when talking and encourage the individual with BI to do the same. ◦Eliminate distractions: limit the number of people in the room, turn off any external noise (music, television), turn bright lights down or off. ◦Limit the number of people talking at one time. One at a time is best.

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◦Gently re-focus the person’s attention to the activity/conversation if they seem distracted. ◦Ask the person to repeat information after it’s been told to them to help the person remember the main points. ◦Offer brief and frequent rest periods.

Speed of Processing Speed of processing refers to how quickly we take in information, make sense of it, and then respond.

Individuals with BI often feel like they’re moving in slow motion compared to the pace of life going on around them: • It may take longer to understand things that were easy to understand before.

• It may take longer to answer questions and a longer time to react, especially in emergency situations.

What You Can Do ◦Allow time to answer questions, read things, or learn new information. ◦Limit the number of people and amount of information. Speak at a normal rate but slow enough for the person process. ◦Keep directions simple and to the point.

Memory Impairments Individuals with BI frequently have difficulty with short-term memory (remembering new information and retaining it from moment to moment and day to day). Long-term memory (or remembering things from the past) often remains a strength. Problems with short-term memory can make it hard to learn new information, including: • Tasks from one day to the next • Names • Any other verbal or written information What You Can Do ◦Encourage use of the planner/memory system provided by the SLP ◦Encourage writing new details in the planner, such as what happened in therapies ◦Keep the current date on the whiteboard, and encourage use of a watch ◦Avoid quizzing when something isn’t remembered. Instead give the correct information ◦Sometimes the brain attempts to fill in memory gaps with information that did not happen.

This is called confabulation. This is not done on purpose. If this occurs, find a way to double check the information (e.g., checking their planner, checking with someone they know was there). If this becomes upsetting, move on to another topic.

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Changes in Initiation After BI, it may be hard to initiate a task, or follow steps, which is referred to as sequencing.

• It may seem as if there is a lack of interest or motivation.

• It may be difficult getting started or following-through once a task begins. Cueing and reminders may be needed to keep going once a task is started.

What You Can Do ◦Work with the team to create routines and write down the sequence of steps for tasks, as needed. Refer to the plan, and encourage checking off each step as it is completed. ◦Work with the team to make a task list or to-do list each day and use it to check off tasks as completed. ◦Establish a timetable for completing tasks so the expectation of completing tasks and how long they should take is known. ◦Provide specific choices. For example, ask, “Would you like to do A or B?” ◦Point out when success in starting and completing a task without help occurs.

Other Executive Functions: Cognitive Flexibility, Organization, Setting Goals, Problem-Solving, and Judgment Executive functioning skills are complex thinking skills that include thinking flexibly, recognizing strengths and weaknesses, setting realistic goals, organizing, planning, and solving problems.

These higher-level cognitive skills are needed to function successfully at home, school, work, and in relationships.

Cognitive Flexibility is the ability to think creatively about a problem or switch from thinking about things one way, to thinking about them in a different way. This can mean finding more than one solution to a problem, or being able to generalize. Generalizing is applying a skill to more than one situation.

For example, after learning to transfer from the wheelchair to the mat in therapy, this skill can be generalized to transfer into a car, etc. Signs of difficulty with cognitive flexibility include having trouble: • Tolerating or adapting to change.

• Moving from one activity/topic to another; “getting stuck.”

• Seeing different points of view.

• Coming up with another solution for a problem when the first solution doesn’t work.

Another executive skill is the ability to recognize one’s own strengths and weaknesses, also called self-awareness or insight. Without self-awareness a person may have unrealistic expectations, and may strive for goals that are too difficult to reach. Examples of problems with this include: • Statements such as “I couldn’t do that before the injury either.”

• Demonstrating over-confidence with their abilities.

Setting realistic goals can be difficult following BI. This requires self-awareness, and problem solving.

The ability to anticipate and solve problems is another important part of executive functioning. The 32

ability to anticipate a problem involves considering the situation, recognizing your own limitations, planning ahead, and thinking about the consequences of an action. The ability to solve a problem involves considering options and choosing the best one. Examples of difficulties with these skills include: • Making decisions too quickly • Making decisions that could be harmful or problematic • Not considering all the information • Struggling to work through new or unfamiliar problems Organization is the ability to group items, thoughts, tasks, etc. together in useful ways.

Signs of difficulties with organizational skills may include trouble with: • Finding important items such as keys or wallet • Paying a bill on time or following a budget • Refilling medications before they run out Planning involves recognizing strengths/weaknesses, anticipating problems, setting realistic goals, problem solving, and then identifying the steps that need to happen to reach a goal. Planning may be simple or more complex with multiple steps. For example, a person may worry about being understood because of slurred speech. Planning out strategies to practice before getting together with old friends can be helpful.

Difficulties with planning may affect: • Estimating the time needed to complete the task • Saying or thinking through the steps to complete something • Gathering the supplies needed for a task What You Can Do ◦Use organizational tools offered by the therapy team. This may include: To-Do lists, calendars, phone reminders, or planners. ◦Think through options to solving a problem. Are there obstacles that might get in the way of these options? Point out when good decisions are made.

Rancho Los Amigos Levels of Cognitive Function When the BI has been from trauma rather than from disease (such as stroke), recovery is likely to follow a general pattern. The Rancho Los Amigos Levels of Cognitive Function were developed at Rancho Los Amigos Hospital in California. These are eight to ten stages of the recovery process from diffuse traumatic brain injury (for information about diffuse injuries see the “About the Brain” section). You may also hear the initial stages of this process referred to as Disorders of Consciousness. Not every person with a TBI will go through all these stages. Each person progresses individually and the stages may overlap. Still, the levels of cognitive function can be a useful guide for staff and family members in understanding the person’s progress and how best to help.

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Level 1 – No Response (Coma) • Appears to be in a deep sleep.

• Does not respond to sounds, sights, touch, or movement.

• Does not open eyes, speak, or move body parts on purpose.

Level 2 – Generalized Response (Unresponsive Wakefulness Syndrome, Vegetative State) • Eye opening, moving arms and legs in response to sounds, sights, touch, or movement • Responds slowly and inconsistently.

• Responds in the same way to what he or she hears, sees, or feels. Responses may include chewing, sweating, breathing faster, moaning, moving, and/or increasing blood pressure.

• Responses are often reflexive and not under voluntary control.

What you can do for level 1 and level 2: ◦Provide small amounts of varied stimulation (talking, TV, touching), as the team suggests. ◦Speak as if he/she understands. ◦Use a soothing, calm voice, with a normal volume and pace. ◦Try to not talk about medical information in front of the person.

Level 3 – Localized Response (Minimally Conscious State) • Occasionally following commands like raising a hand, opening eyes.

• May begin pulling at tubes and lines.

• May look at people and follow movement or sound.

• Responses are delayed and not consistent.

• Awake on and off during the day.

What you can do for level 3: ◦Provide a low stimulation environment: small amounts of stimulation (talking, TV, music, touching) with breaks in between. ◦Bring in favorite belongings and pictures of family members and close friends. ◦When interacting, give the person at least 10 seconds to respond. ◦Keep comments and questions short and simple.

Level 4 – Confused- Agitated • Increasing awareness of surroundings, increasing movement and responsiveness.

• May be confused and frightened and not understand what is happening • May be highly focused on his basic needs such as eating, relieving pain, going back to bed, going to the bathroom, or going home.

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• Memory is better for past events than recent ones, unable to remember day to day.

• Easily overstimulated, which may be shown by yelling, physical aggression, or an inability to relax.

• Attention is limited, can only perform a task for a short period of time.

• May fill in gaps in memory by giving detailed accounts of made up events (confabulation).

Level 5 – Confused- Inappropriate, Non-Agitated • Overstimulation/agitation is decreased, may still occur with fatigue.

• Can pay attention longer and follow simple instructions, but becomes distracted easily.

• Memory is better for past events than recent ones, decreased ability to remember day to day • May be able to follow through on routine activities, but not initiate them.

• Unable to see changes from brain injury. May feel ready to go home, be alone, and/or do things without help.

• May fill in gaps in memory by confabulating.

What you can do for level 4 and level 5: ◦Gently remind the person where he or she is and that he or she is safe. ◦Bring in familiar pictures, posters, favorite things. ◦Keep the environment quiet and calm. Turn off the TV, limit talking, and use a calm voice. ◦During periods of agitation or confusion, redirect to another topic or activity. If this does not work, give the person time alone (or with staff) to calm down. ◦If the person says something incorrectly, give the correct answer and then move on. Try not to argue. ◦Keep comments and questions short and simple. ◦May need safety devices or one on one supervision.

Level 6 – Confused- Appropriate • Attention span is sufficient for conversation, but not for lengthy, complex information.

• Beginning to retain some day to day memories.

• Unable to see problems from brain injury, may express feeling ready to go home.

• More aware of physical problems than thinking problems.

What you can do for level 6 ◦Encourage the individual to write notes about the day or questions that arise. ◦Encourage the individual to participate in activities they enjoyed before the injury. ◦Give feedback and help with social situations and provide emotional support.

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Level 7 – Automatic- Appropriate • Little to no confusion with day to day memory but difficulty remembering details.

• Impaired ability to solve problems and plan ahead.

• Some understanding of problems, but is unable to relate them to “real life” situations.

• May appear bored, depressed, or irritable due to supervision and restrictions.

• Able to perform routine self-care without help • Inflexible or rigid thinking, may seem stubborn.

What you can do for level 7 ◦Offer assistance if needed in planning and organizing daily schedule. ◦Encourage increased independence with routine household tasks. ◦Begin addressing barriers to future return to work or school, if indicated.

Levels 8, 9 & 10 – Purposeful- Appropriate • Requires progressively less assistance to complete daily living tasks • Shows greater independence and asks for assistance more appropriately • Difficulty planning/managing time and remembering information.

• Less emotional control and less tolerance for frustration than before.

• Increased understanding of deficits and how they affect functioning.

• May be unable to respond quickly or appropriately in an emergency or stressful situation.

What you can do for level 8, 9, 10 ◦Encourage techniques to compensate for memory deficits. ◦Support a gradual return to school or work with guidance from your therapy team. ◦Provide understanding and support in emotional situations. ◦Encourage continued involvement with community support groups.

Sensory and Perceptual Changes The five senses are sight, sound, taste, smell, and touch. We also have “special senses” that help us keep our balance, tell us how our body orients itself in relation to the environment, and tell us where one part of our body is in relationship to the rest. Perception is how the brain interprets the sensory information that is constantly being sent to the brain. Perception is complicated and can be affected in many different ways by a BI. For example, perception can be affected if an eye, ear or another sensory system is injured. It can also be affected when an injured brain incorrectly interprets the information it receives.

The Occupational Therapist (OT) will do a perceptual evaluation to determine if perception has been affected and will develop treatment plans for improvement. A few signs or examples of perceptual 36

problems include: • Under-reaching or over-reaching when trying to grasp an object • Trouble recalling things that he or she has seen, felt, or heard • Difficulty putting objects together • Trouble organizing clothes or getting dressed • Impaired writing and drawing ability • Difficulty identifying common objects What You Can Do ◦If you notice any of the above signs, tell your OT. Try to remember specific examples and situations. ◦Ask the OT for suggestions or recommendations for activities that may be helpful.

Vision Difficulty seeing can occur for several reasons; the eyes may be damaged by the injury, the brain may lose control of eye muscle movements, or the brain may interpret visual messages differently. The OT can help sort out vision problems. After doing an evaluation, a referral will be made to an additional vision specialist if needed.

Vision changes may include: • Blurred Vision: Blurred vision can occur up close or at a distance due to the injury.

• Double Vision (diplopia): Diplopia occurs when the eyes do not move together, causing seeing two of everything. This makes it hard to know where objects are, and can lead to bumping into furniture or dropping or spilling things. Closing one eye can be helpful. Sometimes wearing special glasses can prevent double vision.

• Drooping Eyelid (ptosis): A drooping eyelid will block vision and can cause dizziness. It can make it hard to judge distances, or how fast something is moving. It can also make it hard to pour liquids.

• Loss of Vision: Loss of vision can be caused by damage to a part of the brain or nervous system that carries messages from the eyes. This loss may be complete or partial. Sometimes part of the visual field may be missing. For example, vision may be impaired in the left half of each eye.

When this happens, the person may fail to see things to the left, but may be able to see in all other directions. This is called a visual field cut.

• Visual inattention or neglect: Damage to the part of the brain that processes information can lead to a neglect or inattention. When this happens, it’s difficult to pay as much attention to the right or left side (for example, may forget to bathe one side of their body).

What You Can Do ◦Practice any special eye exercises that are given. ◦If special glasses have been recommended, be sure to use them. Follow the schedule and instructions given.

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◦Remove clutter from the room and off the floor. Keep space clear and orderly. Keep items in the same location. ◦Avoid re-arranging furniture or rooms.

Hearing Changes Hearing can change for several reasons after a brain injury: there can be damage to the ears, to nerves that carry information from the ears to the brain, or the brain itself. Examples of problems with hearing, perception, or interpretation of sounds may include: • Difficulty hearing sounds of different volumes or tones • Ringing in one or both ears • Complete loss of hearing in one or both ears • Difficulty interpreting voice inflections and what they mean What You Can Do ◦If you notice changes in hearing, report them to the Rehab Team. ◦Change the environment to make it easier to focus on sounds. Turning off the TV or the radio during a conversation can help. If there are several people in the room, be sure that only one speaks at a time. ◦Look at the person when you speak to them.

Changes in Smell and Taste The sense of smell is closely linked to taste. Smell and taste disturbances are common after a brain injury and can be caused by damage to the brain, nerves, mouth, tongue, or nose. The presence of a tracheostomy tube can lessen the ability to smell until the tube is removed. Signs or symptoms of smell and taste disturbance include: • Loss of sense of smell or taste • Misinterpreting familiar smells • Loss of appetite What You Can Do ◦Offer foods that are appealing and familiar. ◦Remember that foods or drinks that were enjoyable before may now be unappealing. ◦Try to find foods or liquids that seem appealing. Make sure that they are allowed in the person’s special diet. Check with the Dietician, RN or SLP. Vestibular Disturbances The vestibular system controls balance. Poor balance, dizziness, nausea, and vertigo (a sensation 38

of spinning) are all problems that can result from vestibular impairment. Signs of vestibular changes include: • Dizziness with movement • “Jumping” or twitching of the eyes • Nausea if the head is turned or moved quickly • Balance problems which can increase the risk of falling What You Can Do ◦If you see any of the above symptoms, tell the rehab team. Be as specific as possible when reporting what movements or activities brought on the symptoms. ◦Have close supervision when walking or moving. Be aware that the risk of falling is high. ◦Remember to “go slow” especially in an unfamiliar place, in low light, or when practicing a new activity. ◦Be aware of the possibility of motion sickness when traveling in a vehicle.

Swallowing Problems BI can cause weakness or poor coordination of the swallowing muscles. These muscles are located in the lips, tongue, and throat. Changes in thinking or behavior can also affect the ability to swallow food and/or liquid safely. Food, drink or saliva can go into the lungs intead of the stomach when unable to swallow normally or unable to pay attention when eating. This is called aspiration and can be dangerous. It can cause choking. Some people are unable to feel food/liquid going into the lungs and might not react by choking or coughing. Aspiration can also lead to a respiratory infection.

Sometimes after a BI, a tracheostomy tube (trach) is placed in the trachea. This is done to help the individual breathe. Having a trach does not prevent the ability to swallow; however, some factors may make it more difficult. Talk to your SLP to learn more about a tracheostomy tube and its impact on swallowing.

There are a number of ways to assess the ability to swallow safely. The SLP is usually the primary person to test an individual’s swallow. The decision to start the individual eating or drinking is then made based on input from Respiratory, Nursing, and the physician. Some tests used for swallowing include: • Bedside Swallow Evaluation (BSE): Trying small amounts of food or liquid to test how well the muscles are moving.

• Blue Dye Test: This is only completed if there is a tracheostomy. This test will give the SLP more information about whether or not it is likely that food/liquid is going into a person’s lungs.

• Modified Barium Swallow Study (MBSS): An x-ray test that looks more closely at the swallow.

• Fiberoptic Endoscopic Evaluation of the Swallow (FEES): A test using a small camera to look at the swallow.

A variety of techniques are used to improve swallowing. Some therapies involve stimulation techniques or exercises, while others involve the use of special positions, special diets, and/or feeding and eating routines.

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After the swallow evaluation is completed, the SLP, with input from the team, will decide whether the person is ready to begin eating food and/or liquid by mouth. The types and textures of foods and liquids that the individual can safely swallow will be determined, along with strategies to help the person eat safely. He or she may need to begin with eating small amounts of food each day and may need to be supervised by the SLP. Signs of swallowing problems may include: • Drooling, or having difficulty managing saliva • Difficulty chewing • Problems moving food and liquid to the back of the mouth • Food getting “stuck” in the cheeks • Coughing, choking, or throat-clearing while eating, drinking, or swallowing saliva • A wet-sounding voice • Increased congestion in the chest and/or a low-grade fever • Becoming tired and/or short of breath while eating or drinking Sometimes there are no clear signs of swallowing problems. This is when tests such as the MBSS or FEES can be helpful to see what’s going on inside the throat.

What You Can Do ◦Only offer food or liquid that the SLP has approved. Offering food, or liquids with textures, before talking to the SLP, may increase risk for choking or developing a lung infection. ◦Learn how to best assist during meal times, including diet modifications, positional techniques, and/or exercises. ◦Allow time to eat and drink at a slow, safe pace.

Mobility/Movement BI can affect the ability to move or control muscles. It’s possible to not be able to move at all, only move one side or a part of the body, or may move involuntarily. Movement problems can lead to other problems, such as poor balance, muscle and joint stiffness, and difficulty walking.

Movement problems after BI can take many forms, depending on which part of the brain is affected and the severity of the injury. Below are explanations of some common movement difficulties that people with BI may experience.

Strength • Atrophy is a decrease in muscle bulk or size usually due to inactivity. An atrophied muscle has typically lost some or all of its strength.

• Neuropathy is injury to a nerve resulting in weakness, numbness, and/or pain. The cause can be direct damage to a nerve or pressure that develops over a nerve. Muscles anywhere in the body 40

can be affected. With neuropathy, a muscle will eventually atrophy and become weaker. At times, the nerve pathways are able to reform which can take many months.

• Paresis means weakness and loss of muscle tone in a particular muscle or part of the body.

Damage to a particular area of the brain can cause weakness or paresis. There are several terms that describe paresis more specifically: ◦Monoparesis is weakness of just one arm or one leg. ◦Hemiparesis is weakness on one whole side of the body. ◦Paraparesis means both legs are weak. ◦Tetraparesis or quadriparesis is weakness of both arms and both legs.

Joint and Bone Changes • Contractures can occur when muscles tighten over time or as a result of the brain injury. Eventually, these tighter muscles can shorten permanently. When the joint’s ability to bend or straighten all the way becomes limited by permanently shortened muscles, there is a contracture.

• Osteoporosis results in weaker bones as people age or are unable to do enough weight-bearing exercises with arms or legs. Activities such as standing, even passively in a standing frame, or walking are excellent ways to help prevent osteoporosis.

What You Can Do ◦Encourage physical activity. ◦Discuss how to best support activity and muscle/joint recovery with the rehab team. ◦Splints or casts may also help and will be recommended by the rehab team if needed.

Muscle Tone Normal muscle tone refers to the amount of “stretchiness” a healthy muscle has, and how much the muscle resists when someone tries to move or stretch it. A muscle with normal tone is not floppy or squishy – but it also isn’t too stiff. Muscle tone is hard to describe, so ask your therapist to let you feel muscles with normal tone, too much tone, and too little tone.

• Rigidity is extreme tone of the muscles, or in other words, a muscle with very little to no stretch.

This makes it difficult for the person to move, or for someone else to move the person’s body.

• Spasticity (hypertonicity) refers to increased tone, stiffness, or contractions of muscles at varying degrees. Often the muscle is stretchy through part of the motion and stiffer through the rest. This can cause stiff and awkward movements. Medications may be prescribed to lessen spasticity.

• Flaccidity (hypotonicity) refers to a lack of tone. Muscles may be floppy or limp. It is important to support the limb. Consult your OT or PT for recommendations.

What You Can Do ◦Talk to the OT and PT to learn more about how you can help with changes in muscle tone.

The wrong kind of movement can make muscle tone worse. ◦Sometimes injections or even surgery are recommended to lessen the effects of muscle tone.

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Coordination Changes • Ataxia refers to uncoordinated muscle movements. When a person with ataxia moves an arm or leg, it may look like the person has trouble “finding the target.” Often ataxia causes balance problems and can impact swallowing. Ataxia is frequently the result of an injury in the cerebellum.

• Apraxia is the loss of ability to perform purposeful movements. There may be an inability to use objects, even though there is no paralysis or sensory impairment. Sometimes a person with apraxia can do an activity automatically, but is unable to do the same activity if asked. For example, if handed a toothbrush a person may be able to brush his or her teeth, but may not be able to do so if just asked.

• Movement Disorder is a general term for involuntary movements or movements that a person cannot control. This can be caused by the brain injury itself or by side effects from medications and should be monitored closely. These can include tremors or other unusual movements.

What You Can Do ◦Ask the rehab team about specific suggestions they may have regarding movement disorders and changes in muscle coordination. You will want to work on activities that are specifically designed by the rehab team.

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The Craig Hospital Brain Injury Program Section IV: Family and Friends This section is written specifically for family members and close friends. Brain injury has impacted your life as well as the life of the individual who sustained the injury. This chapter will address some of the challenges that may occur for your family and strategies for coping with these challenges.

Brain injury: A Family Matter Brain injury is a family matter. The injury happens to the person, but the effects ripple through everyone who loves that person. Each family, and each family member, may experience the injury differently, and may have different ways of coping. Initially you may be in crisis mode, focused on the medical needs of the person who sustained the injury. Now that you are at Craig, you may find yourself able to move beyond the initial medical crisis. You may be just beginning to think more about the future and the needs of your family as a whole.

The effects of brain injury are complex and can be difficult for your friends, co-workers and others to understand. It can seem like a lonely road at times. However, you are not alone. It is estimated that over 2 million Americans sustain a traumatic brain injury each year. Each individual is unique and each family faces a unique journey. Know that other families have been down a similar road and they have faced similar experiences as well.

The Uncertainty of Brain Injury If your family member broke an arm, the physician could predict a fairly certain course of recovery. It is much more difficult to predict recovery from a moderate to severe brain injury. Location, type, and severity of the injury play an important role in predicting the outcome, as does the person’s pre-injury functioning. However, no one can tell you exactly how this injury will affect your loved one and family over the long term. This uncertainty can make it difficult to plan ahead, and to update friends on your loved one’s progress. Most spontaneous recovery does occur in the first 2 years after injury. However, many people report change and growth over time, even years post-injury. Life after brain injury may involve developing new ways of doing things, problem solving obstacles, and setting new goals.

Changes in Family Roles Every person in your family fills one or more family roles (e.g., parent, spouse, bookkeeper, breadwinner, etc.). After a brain injury, family roles may shift, at least for a time. The person with the injury may not be able to offer the support he or she once did and may not be able to take part in activities that you once did together. Overtime this may change, some things may return to how they were before the injury.

However, some role changes may be long lasting. Roles may need to be filled by other family members, and other roles may be difficult to fill. Be aware and open with each other about these changes in roles.

Coping with Emotions Each member of your family may experience a variety of emotions in response to the injury. Sadness, relief, anxiety, hope, grief, anger, exhaustion, and guilt are common. You may feel relieved that your loved one is alive, while at the same time feeling sad, and anxious about the future, and the loss of plans, and dreams. You might even feel anger toward the injured person, or members of your family may become angry with each other. Many families experience feelings of grief over the loss of abilities and future plans. This grief may be complicated. It might feel like there is little time to grieve, because there is so much to do. Friends may not understand your need to grieve. They may be excited that your loved one has lived through the injury, and not understand the long-term challenges.

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All of these emotions are normal. It’s healthy to acknowledge these feelings, and to give yourself the right to feel them. The process of adapting to brain injury is different for everyone, and there is no “right” or “wrong” way to react. Taking care of yourself, and your non-injured family members, is a necessary and important part of brain injury recovery.

Below are some suggestions and strategies for you and your family to enhance your well-being as a family as you continue your journey.

1. Take care of yourself You are an important part of your loved one’s recovery. Take care of yourself so that you have the energy and well-being to be there for your family member. We all take care of ourselves in different ways. Do what feels good to you, gives you energy, and reduces stress. You may want to consider checking in with your primary care physician. Let him or her know what you are going through, and any changes, or symptoms of distress you may be experiencing.

It can be helpful to look at your well-being in the shape of a wheel, encompassing physical, emotional, cognitive, social, and spiritual aspects of wellness. Is there a section of your wheel that’s neglected?

A wheel that is in balance will work more smoothly. What can you add to bring your wheel back into balance? Some activities, like taking a walk with a friend, can add to more than one section of your wellness.

The Wellness Wheel

*Adapted from The Wellness Wheel, William Hettler, M.D.

Below are some websites offering helpful information about taking care of yourself.

• The American Heart Association: https://www.heart.org/en/healthy-living • American Academy of Sleep Medicine: Tips for Better Sleep http://sleepeducation.org • Center for Disease Control (CDC): https://www.cdc.gov/healthyliving/ • US Department of Health and Human Services: https://www.hhs.gov/programs/preventionand-wellness 44

2. Pace Yourself.

As one former patient once said, “This is not a footrace, it’s a marathon”. Your injured family member may need your help and energy for a long time. Spread tasks out so that you have time to breath.

3. Ask for Help.

Think about the tasks that are not being completed while your injured family member is in rehabilitation.

This might include tasks he or she usually takes care of, and new tasks related to the injury. Write down a list of the things with which you need help. Include all of the tasks that you might feel apprehensive or stressed about doing yourself, or don’t have time to complete. When a friend asks “what can I do?” ask them to choose something off the list. Update the list each week. The ability to ask for help is a strength. It allows you to have more control over your life, to feel more organized and prepared, and to have time for the things that are most important for you. Many times friends want to help but don’t know how until you let them know.

4. Tune Up Your Coping Skills.

Stress is the brain’s response to a demand. Stress becomes a problem when you feel that the demands of your life are greater than your ability to cope with them. When stress lasts a long time without relief it can be harmful, affecting you physically and emotionally. How we cope with stress depends on our emotions, our thoughts, our resources, and our learned coping strategies. We can learn new strategies for coping with stress. The psychologist or counselor (CCM) on your treatment team can help you explore how you cope with stress and new coping strategies you might try.

Here are examples of coping strategies that people often use.

• Emotion Focused Coping: Sometimes we face problems that we have little control over, events that we cannot change. In these situations, it can be helpful to focus on coping with the emotions that surround the situation. Examples of Emotion Focused Coping include relaxation training, deep breathing, yoga, mindfulness practice, prayer, supportive counseling, and physical exercise.

• Appraisal Focused Coping: Sometimes stress comes in part from how we are looking at a situation, and the words that we use to describe the situation. For example, you may lay awake at night, telling yourself “he or she will never get better. Our lives are ruined”. When this occurs, changing the way you are thinking about a situation can help you cope. The psychologist or counselor can help you look at ways to change how you might evaluate and think about your situation.

• Problem Focused Coping: This method of coping involves approaching a problem straight on, and using a step by step approach to solve the problem the best you can. These steps involve deciding exactly what the problem is, developing possible solutions, getting the help and resources you need, and trying out a solution.

5. Gather the information you need.

Having the information you need can help you feel more confident and less stressed. Is there more information you need about brain injury, so that you can better communicate with the doctor or insurance company? Is there more information you need about Medicaid, adaptive equipment, transportation resources, or legal resources? Your treatment team is a good source for information. They can often point you toward community resources and information regarding brain injury. Use this book as a place to keep notes. You may want to develop a system on your computer, or in your home for filing away information that you may need.

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6. Communicate assertively.

We can choose how to communicate our needs. We can communicate aggressively, passively or assertively. Being assertive means communicating in a way that is straight forward, not blaming, and solution focused. Assertiveness communication focuses on solving a problem, not blaming a person.

When you are frustrated or overwhelmed, it can be harder to be assertive. Communicating assertively often involves starting with the word “I”. For example, “I need….” “I would like…” or “I prefer…” The counselor or psychologist on your team can help you with strategies for communicating your needs assertively.

7. Maintain a Circle of Support.

There may be changes in the circle of people who you usually call upon for support. You may be far away from home and your usual support system is not around. Or you may not be seeing regular friends and acquaintances because you aren’t doing your usual activities. In addition, the friends that you usually rely on may not understand the injury, and may be hesitant to talk with you about it. All of these factors can cause a change in your usual support system. Be aware of this. Reach out to your circle of support. Ask a friend to take a walk with you, or to go out to dinner. Consider adding to your Circle of Support by attending the Craig Family Group, having coffee with the family members of other patients, or reaching out to old friends who you feel will be supportive.

8. Have Weekly Family Meetings.

Chances are your life may be very busy and hectic right now. The usual routines and communication within your family may be disrupted. Plan a time each week to sit down with your family, in person or by phone/skype. Use this time to check in with each other – not just to discuss the needs of the injured family member, but to discuss how everyone is doing. Problem solve together and provide each other with support. Review how everyone’s week has gone, and what the plans are for the week ahead.

If possible, plan at least one enjoyable activity as a family for the week. If you are not able to all be together, you can plan a simultaneous activity. For example, go to the same movie or read the same book and then discuss it the next time you have a family meeting. Use this weekly meeting to connect and support each other.

Tips for Interacting with Your Injured Family Member/Friend While your family member is in the hospital, you can help just by being present. You are a familiar face and a source of support for your loved one. You are also a source of historical information for the individual and for the treatment team.

Here are some other ways in which you may be helpful when interacting with your loved one. Some ideas may be more useful early in the recovery process, while others will be useful later on.

Help stimulate memories.

• Bring in familiar family and pet photos to help his or her memory.

• Talk about familiar past events, names, places, and interests.

Be natural in your interactions.

• Speak in a normal tone and volume, unless he or she had hearing problems before.

• Speak to the individual at his or her age level.

• Use humor appropriately. Laugh together when humor arises. If the person laughs at something that isn’t funny, ignore it or change the subject.

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Be positive and realistic.

• Emphasize the individual’s abilities. Point out gains made since the injury.

• Look ahead, not back. Help the person do the same. Avoid comparing current speech, cognitive or physical abilities to those from before the injury.

• Be understanding, supportive, and realistic. Avoid overly optimistic statements such as, “You’ll be fine... you’ll be back to work in no time.” Use positive but realistic statements to let the person know you are aware of the challenges but are hopeful. “I know you are frustrated being away from home and the kids. We are so proud of how hard you are working.”

• Your injured family member may say or do things that are very uncharacteristic, such as cursing.

This is related to the injury. Try to ignore this lack of inhibition and focus on positive feedback and interactions.

• Remember that each individual has a unique injury and unique recovery. Your loved one will not recover in the same exact way that someone else does.

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The Craig Hospital Brain Injury Program Section V: Discharge: Leaving the Craig Inpatient Program Discharge from Craig inpatient rehabilitation is a transition back to the community. The team will begin working together on a discharge plan within the first few days after your inpatient admission. The plan will be revised throughout your hospital stay based on your individual recovery and circumstances. This plan will include: • The type of supervision and assistance that may be needed after discharge • Accessibility and equipment needs • Continued nursing care and ongoing therapy • Funding resources • Transportation • A plan for return to daily activities Discharge does not mean the end of your recovery. The next step after inpatient rehabilitation depends on your unique situation. The rehab team will discuss options with you and your family and make recommendations. These discharge options may involve transfer to a different type of rehabilitation program, living at home or in the community with outpatient treatment, or living at home with a program of activities to continue. You and your family may feel excited to leave the hospital to resume activities and see other family and friends. At the same time, you may feel anxious about leaving the hospital, wondering about challenges that lie ahead. Having the information you need will help you feel prepared.

We encourage you and your family to ask questions and share concerns. The rehab team will work with you to ensure that you are knowledgeable about the injury, and are as comfortable as possible about the transition from inpatient rehabilitation.

Discharge: What to think about Below are some items you may need to consider prior to your discharge. Each individual is unique and not everyone will need everything on this list: Medical Equipment: The rehab team will work with you to decide the need for equipment such as a wheelchair, lift, or bathroom equipment. Here are some questions you may want to ask: • What equipment is necessary at discharge?

• When and how should it be ordered?

• How and when will it be delivered?

• Who will pay for the equipment?

Personal Care Supplies: The nursing team will help you determine items you may need, including respiratory, skin, dietary, bedding, or bowel/bladder supplies.

• Which specific supplies will be needed?

• When and how will they be ordered?

• How will they be purchased and delivered?

• How are they replenished?

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Medications: At discharge the physician will write prescriptions for all medications needed. Before the discharge day, you will work with the pharmacy to: • Develop a plan for obtaining medications after you leave Craig: This may include sending prescriptions to the next rehabilitation center or selecting a pharmacy from which you would like to obtain prescriptions. Using one pharmacy for all medications will help prevent medication errors.

• Understand prescribed medications including: what they are for, doses, times of the day they should be taken, duration of therapy, side effects, and how to manage them. This may also include discussions about drug and alcohol interactions.

• Understand what medications are covered by your insurance, and what will be required when you obtain the medications outside the hospital.

Family Training and Education: Throughout your stay, the treatment team will provide you with training and information to help you be safe and feel comfortable after leaving Craig. This may include education on such things as: • Wheelchair transfers • Communication strategies • Nutrition Plan for Ongoing Therapy: The team will put together a plan for therapies that may be recommended after discharge. The team will discuss this plan with you during family conferences. Some questions that may be discussed are: • Is continued therapy needed?

• What options do you have for receiving recommended therapy?

• What types of therapy are needed, how often, and for how long?

• How much will therapy cost and how will the cost be covered?

• If therapy takes place outside of your home, what about transportation?

Primary Care Physician: It is important to identify a primary care physician (PCP) who will be your primary medical provider in your home community. If specialist care is needed, your CCM will discuss this with you. Here are a few things to consider when deciding on a PCP: • Where is the PCP located and does the office meet your accessibility needs?

• Do they accept your insurance plan or funding source?

• Does the PCP have prior experience with individuals living with brain injury?

Community Resources Your CCM will help you and your family determine the resources available in your community. She or he will assist you in applying for resources and services. You can use the Discharge tab at the back of this book to keep information about discharge resources that are specific to your needs. Here are a few resources you may find helpful: • The State Brain Injury Association or Alliance: Each state has an organization that provides information, support, resources, education and support groups, and advocacy for individuals with brain injury. These organizations are usually called brain injury Associations or Alliances (for 49

example, the Colorado Brain Injury Alliance, or BIAC).

• National Resources: There are several nationwide organizations that offer information, resources, and support specific to brain injury: ◦The Brain Injury Association of America: https://www.biausa.org ◦Model Systems Knowledge Translation Center: https://msktc.org/tbi Benefits and Financial Resources Understanding your health care coverage and other possible financial benefits/options is very important. It is also important to look at how long your current insurance coverage is available. The CCM can help you understand these benefits.

• Social Security: You may be eligible for Social Security Disability Insurance (SSDI). Eligibility is based on the amount of time the individual has worked and paid into the Social Security system.

There is a 6 month waiting period for SSDI, and checks always arrive one month later. So, if you are eligible, the first check would come 7 months after the injury. If you receive 24 consecutive social security checks, you are then automatically eligible to enroll in Medicare. Your CCM can assist you with the Medicare application process. ◦Medicare: Medicare is an option for some people with severe long-term injuries. Medicare is available for individuals age 65 or over, or individuals who have lived with a severe disability for a certain period of time. Applying for Medicare can be a long process and should be started as soon as possible. You will need to work with physicians and therapists who accept Medicare. ◦Medicaid and SSI: Supplemental Security Income (SSI) is a federal program that provides financial support to people with low incomes. How much someone earns per month, how much is in the bank, and how many assets someone has, determines if they are eligible. It can be difficult to qualify. However, if you do qualify, in many states you will automatically be considered eligible for Medicaid. Medicaid will help pay for certain medical and rehabilitation services. What it will pay for and how much it will pay depends on the state where you live.

If you do qualify, you may want to choose physicians and providers who accept Medicaid. ◦Medicaid Waiver Programs: Some states offer special waivers specifically for people with traumatic brain injury. These may help cover special services for people with brain injury.

Ask you CCM for information about this.

Driving and Transportation The rehab team will help you and your family determine options for transportation after inpatient rehabilitation. Driving is a complex skill that can be difficult after brain injury. The individual may be ready to consider driving again soon after discharge, or driving may be a longer term goal. For some people, other forms of public or private transportation may be needed. The team can help you find transportation resources in your community.

The state of Colorado requires a medical release on file at the Division of Motor Vehicle (DMV), following a neurological event (such as a brain injury) before a person can drive. Before a doctor can approve someone to drive, he or she needs to know the person is able to drive safely in all types of traffic conditions. Each state has its own process to approve someone for a return to driving. There are several resources that can be helpful: • Association for Driver Rehabilitation Specialists member directory search (nationwide). You can identify a driving program in your local area.

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• https://www.aded.net • The Craig Hospital Outpatient Program has a driving program. Please see Chapter 6 of this book for more details if you are interested in this program.

Community Reintegration and Productive Activity Most people want to be involved in meaningful productive activity. This may include working at a paying job, going to school, taking care of a home, or raising a family. It can also mean being involved in meaningful volunteer work or having a hobby that is important to you. The team may recommend working with an occupational therapist or vocational rehabilitation counselor to help prepare for productive activity and find activities that are meaningful.

Making a Smooth Transition The inpatient rehab hospital environment is often more structured, predictable, and supervised than the “real world”. After discharge from inpatient rehab, some people may become more easily frustrated, overwhelmed or fatigued. It can be challenging to develop a daily routine, especially if the individual is not returning to work or school at this time.

What You Can Do to Help • Follow the instructions provided by the team. They may recommend waiting a while before taking on certain activities. Check with your doctor before starting new activities.

• Set up a daily routine and try to keep it as consistent as possible from day to day.

• If changes can’t be avoided, discuss them in advance so these changes are not a surprise.

• Keep a schedule of ongoing daily activities in plain view. Include the time, event or activity, and names of the people involved. If possible, write all this on a large calendar that everyone checks at the beginning of each day, at noon, and at the end of the day.

• Keep a daily log of events each day. Keep it simple. Review this at the end of the day and/or end of the week.

• Set aside a regular time each day for some tabletop games or crafts. Choose activities that were familiar before the injury.

• Try to get out of the house each day. A short walk, a trip to the store, or brief visits with friends and family members are good ideas.

• Remember that fatigue is normal. Plan regular rest periods throughout the day.

• Educate friends and other family members about brain injury. They may be tempted to encourage “doing more.” It may be difficult for friends and family to understand the invisible challenges of brain injury. Things like fatigue, feeling overwhelmed, or feeling anxious can be difficult for others to see.

You may need to be very clear and direct with others about the strategies that your family is using.

Be sure that other family members and friends are aware of: ◦How much supervision is needed, safety needs and restrictions. ◦The type of structure needed for the person with the brain injury. (For example, let others know if they need to write things down or use a calendar, if things need to be done one step at a time or with a smaller number of choices). ◦Tell them about precautions and restrictions on things like sports, exertion, driving, and 51

drinking alcohol. ◦Make sure others understand memory limitations, and how short-term and long-term memory may differ.

Using Alcohol, Tobacco, and Marijuana Alcohol: The ability to process alcohol changes after brain injury. Combining alcohol with medications and dietary supplements can cause serious medical problems. It is important to be straight forward with your health care provider about the amount of alcohol you consume. Ideally, you should discuss the use of alcohol with your health care provider before drinking alcohol.

If you choose to use alcohol it is important to understand the risks. Alcohol can cause drowsiness, confusion, problems with balance and coordination and make it hard to problem solve. Alcohol decreases breathing rates and increases the risk of having a seizure. In somebody who already experiences these symptoms, alcohol can worsen them. Alcohol use increases the risk of stomach bleeding. Additionally, many medications and alcohol are processed in the liver, using them together may increase the risk of experiencing harmful drug interactions. Some drugs that interact with alcohol include: • Spasticity medications – baclofen (Lioresal), tizanidine (Zanaflex) • Muscle relaxants – cyclobenzaprine (Flexeril), methocarbamol (Robaxin) • Sleeping pills – zolpidem (Ambien), Zaleplon (Sonata), Eszopliclone (Lunesta) • Anticoagulants – warfarin (Coumadin), Rivaroxaban (Xarelto), Apixaban (Eliquis), Aspirin • Antidepressants – fluoxetine (Prozac), sertraline (Zoloft), paroxetine (Paxil), citalopram (Celexa), escitalopram (Lexapro), venlafaxine (Effexor, Effexor XR), duloxetine (Cymbalta) • Non-steroidal anti-inflammatory medications such as ibuprofen (Advil), naproxen • (Aleve), acetaminophen (Tylenol) • Pain medications such as hydrocodone, oxycodone, morphine, tramadol (Vicodin, Lortab, Norco, Percocet, Percodan, MS Contin, OxyContin, Ultram) • Some antibiotics – metronidazole (Flagyl) • Other: Alprazolam (Xanax), Diazepam (Valium), Clonazepam (Klonopin), lorazepam (Ativan) Tobacco Smoking: Smoking can interfere with health and recovery after brain injury. Smoking decreases your body’s ability to heal wounds and infections. It also decreases your ability to tolerate pain and may make treating it more difficult. Tobacco smoke (not nicotine) is responsible for many drug interactions and can affect the absorption, distribution, metabolism, or elimination of other drugs.

Some common drug interactions that have been reported with tobacco include hormonal contraceptives, benzodiazepines (alprazolam and diazepam), caffeine, haloperidol, heparin, insulin, olanzapine, propranolol, and theophylline. These medications may need dose adjustments if your smoking habits change. To quit smoking is not easy, but there are many products, tools and resources available to help you. Your health care provider can give you information about how to quit.

Other Resources: • Colorado Quit Line: https://colorado.quitlogix.org/ or call 1-800-QUIT-NOW (784-8669) • American Lung Association: http://www.freedomfromsmoking.org • Center for Disease Control: https://www.cdc.gov/tobacco/ • American Cancer Society: https://www.cancer.org/healthy/stay-away-from-tobacco 52

Marijuana: It is important to let your doctor know if you are using marijuana and the amount you are using. It is best not to use marijuana while taking medications. However, if you choose to use marijuana while taking medications it is important to understand the risks.

Using Marijuana can make it hard to think correctly, and make your body weaker than it already may be from your injury. It can slow your reaction time and make the simple acts more difficult. It can interfere with learning and motivation.

Heavy or chronic use of marijuana has been linked to serious illnesses such as sexual dysfunction, abnormal menstruation, increased risk of heart attack (even in young users), vomiting, depression, anxiety, and panic attacks. Inhaled marijuana irritates the throat and lungs, increasing the chance of respiratory infections.

Marijuana interacts with many prescriptions and over the counter medications. The effects of mixing common medications with marijuana can cause dangerous side effects on your heart, brain, and other parts of your body. Marijuana can also change how well your medications work. It can speed up or slow down the effects of medicines.

It is important to know that marijuana can be addictive and many marijuana users, especially heavy users, are likely to experience withdrawal symptoms if use is stopped. Common withdrawal symptoms include anger, aggression, appetite changes, irritability, restlessness, anxiety, and sleep disturbances.

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The Craig Hospital Brain Injury Program Section VI: The Craig Outpatient Program and Outpatient Clinic Your inpatient rehab team may recommend ongoing therapy following discharge from inpatient treatment. Craig Hospital’s outpatient rehabilitation program may be one of the options discussed based on your family member’s needs and goals.

If outpatient rehab will take place at Craig, each member of the outpatient team will conduct an initial evaluation. Together with you and your family member, the team will develop a plan and goals specific to your needs for returning to the community. This plan will be reviewed and adapted throughout the outpatient rehab program.

During the outpatient rehab program, your plan may focus on areas such as: • Functional communication • Self-care, independence, and safety • Mobility and transportation • Structuring the day and time management • Recreation, fitness, and socialization • Self-advocacy • Managing your home and money • Returning to school or work routines Home Exercise Programs: During outpatient rehab, you and your family member will receive information, exercises, strategies, and recommendations from the rehab team to use in the home and community. The rehab team may give “homework” and home exercise programs to complete during your week. This homework will help with recovery and help maintain gains already made.

Outpatient Clinical Care Management The Outpatient CCM provides counseling and education, and coordinates the treatment plan. He or she will also help your family learn to find and access resources in the community, and to advocate for services and benefits that you may need.

Community Reintegration For many people, returning to pre-injury life includes feeling productive again. Being productive can mean working, going to school, or volunteering. The outpatient Community Reintegration (CR) Specialists are therapists who can help individuals work on return to productive activity. The outpatient team determines when an individual is ready for a referral to CR. The CR Specialist will then complete a formal intake evaluation to determine what services and resources you may need. These services may include: • Determining an individual’s readiness to return to work and deciding on any needed accommodations • Determining an individual’s readiness to return to college-level or retraining programs • Finding out about school disability services 54

• Connecting with the State Vocational Rehabilitation Program • Providing ongoing support once an individual goes back to work or school • Locating volunteer opportunities

Driving and Transportation Transportation is an important part of returning to the community. Individuals and families often have questions about returning to driving or questions about other transportation options. If you are not returning to driving at this time, your CCM can help you locate transportation services that may be available in your community.

For many people, driving is a sign of independence. However, driving is a complex skill which can be difficult after a brain injury. Driving after a brain injury is not for everyone. Some people begin to think about returning to driving during the outpatient rehab program, others may not be ready to return to driving until much later.

Pre-Drive Assessment: Prior to a formal behind-the-wheel assessment, your rehab team will determine your readiness for a pre-drive assessment. A pre-drive assessment involves testing skills related to driving to evaluate your safety before you attempt a behind-the-wheel evaluation. This assessment may include sessions with OT, PT, and Speech, focused on: • OT – visual motor coordination, vision, speed of processing, reaction time, attention, arm movement and coordination • PT – balance, neck range of motion, vestibular system, leg movement and coordination, reaction time • Speech – judgment, multi-tasking, attention, planning, memory, speed of processing After you complete your pre-drive assessment, your rehab team will discuss with you the level of your driving-related skills, and the recommended next steps. The next steps may include allowing more time for your brain to heal, home exercises to improve certain skills, or progressing to the behind-thewheel assessment.

Driving Paperwork & Logistics: • Order. Your OT will request an order from your doctor for the behind-the-wheel assessment. In a few days after the request, the paperwork will be processed and you can schedule the behind-thewheel assessment.

• License. You must have a valid driver’s license or permit. The Driving Department can assist you with license issues.

• Payment. Be aware your insurance typically will not cover these costs and you may need to pay out-of-pocket. Your CCM may have more funding information.

• Other. Follow any other suggestions or requirements from your rehab team – including: home exercises and not driving until medically cleared by the rehab team.

• Behind-the-Wheel Assessment: A Certified Driving Rehabilitation Specialist will complete the behind-the-wheel assessment. The assessment will begin in simpler environments and progress to more complex and demanding road conditions.

• Department of Motor Vehicles: Upon successful completion of the driving evaluation, DMV/ licensing protocol will need to be followed for medical clearance.

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The Outpatient (Medical) Clinic The Craig Hospital Outpatient Clinic is located on the first floor of the hospital and is a resource for Craig outpatients. The Outpatient Clinic supports patients who are transitioning from inpatient to outpatient, as well as individuals returning for outpatient services at Craig Hospital. Outpatient Clinic staff include Nurse Practitioners, Rehabilitation Nurses, and Rehab Techs who work closely with your physician and outpatient rehab team to support rehabilitation needs.

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The Craig Hospital Brain Injury Program Section VII: Glossary Many medical terms that have to do with Brain Injury will be used in the care and rehabilitation of your loved one.

This glossary is a list of terms and the definitions of many words you may hear while at Craig Hospital. If you need more information, please ask one of your Rehab Team Members.

Affect: How a person expresses themselves through facial expressions, gestures, and tone of voice.

Agnosia: Failure to recognize familiar objects although the sensory mechanism is intact. May occur for any sensory modality.

Agraphia: Inability to express thoughts in writing.

Alexia: Inability to read.

Alertness: Being awake and able to respond to stimulation.

Attention: Being able to focus on one subject or bit of information.

Ambulate: To walk.

Amnesia: Lack of memory about events occurring during a particular period of time.

Aneurysm: A balloon like deformity in the wall of a blood vessel. The wall weakens as the balloon grows larger, and may eventually burst, causing a hemorrhage.

Anomia: Loss of the ability to recall names of objects. Persons with this problem often can speak fluently but have to use other words to describe familiar objects.

Anosmia: Loss of the sense of smell.

Anoxia: A lack of oxygen that can cause damage to the brain. Cells of the brain need oxygen to stay alive. When blood flow to the brain is reduced or when oxygen in the blood is too low, brain cells are damaged.

Anterograde: Not able to consolidate information about ongoing events. Difficulty with new learning.

Anticonvulsant: Medication used to decrease the possibility of a seizure.

Antidepressants: Medication used to treat depression.

Aphasia: Loss of the ability to express oneself and/or to understand language. Caused by damage to brain cells rather than deficits in speech or hearing organs.

Anxiety: a feeling of worry, nervousness, unease, about an event or situation or for no apparent reason.

Apraxia: Not able to carry out a complex or skilled movement; not due to paralysis, sensory changes, or deficiencies in understanding. See also parietal lobe.

Aprosodia: Unable to produce or understand the meaning of different tones of voice.

Arousal: Being awake, able to stir to action or strong response. Cognition is not possible without some degree of arousal.

Articulation: Movement of the lips, tongue, teeth and palate into specific patterns in order to create speech.

Aspiration: When fluid or food enters the lungs through the wind pipe. Can cause a lung infection or pneumonia.

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Ataxia: A problem of muscle coordination not due to apraxia, weakness, rigidity, spasticity or sensory loss. Ataxia is caused by injury of the cerebellum or basal ganglia. Can interfere with a person’s ability to walk, talk, eat, and to perform other self-care tasks. See also cerebellum.

Atrophy: A wasting away or decrease in size of a cell, tissue, organ, or part of the body caused by lack of nourishment, inactivity or loss of nerve supply. Usually used in reference to arm and leg muscles getting smaller.

Attention/ Concentration: The ability to focus on a given task or set of stimuli for an appropriate period of time; being able to filter out the relevant and irrelevant information from one’s environment.

Augmentative/Alternative Communication: Use of forms of communication other than speaking, such as: sign language, “yes, no” signals, gestures, picture board, and computerized speech systems to compensate (either temporarily or permanently) for severe expressive communication disorders.

ADL (Activities of Daily Living: Routine activities carried out for personal hygiene and health (including bathing, dressing, feeding) and for operating a household.

Behavior: The way a person acts and reacts to situations.

Bilateral: Meaning both right and left sides.

Brain Injury, Acquired: The implication of this term is that the individual experienced normal growth and development from conception through birth, until sustaining an insult to the brain at some later time which resulted in impairment of brain function.

Brain Injury, Closed: Occurs when the head speeds up and then rapidly slows down or collides with another object (for example the windshield of a car) and brain tissue is damaged, not by the presence of a foreign object within the brain, but by violent smashing, stretching, and twisting, of brain tissue. Nothing from the outside of the body goes through the head and into the brain. Closed brain injuries typically cause diffuse tissue damage that result in disabilities which are generalized, depend on what part of the brain is injured, and how much of the brain was injured.

Brain Injury, Mild: A patient with a mild traumatic brain injury is a person, who has had a traumatically-induced physiological disruption of brain function, shown by at least one of the following:

• Any period of loss of consciousness • Any loss of memory for events immediately before or after the accident • Any alteration in mental state at the time of the accident (e.g., feeling dazed, disoriented, or confused) • Neurological deficit(s)/problems which may or may not be only for a short amount of time; but where the severity of the injury does not exceed the following: ◦Loss of consciousness of approximately 30 minutes or less ◦After 30 minutes, an initial Glasgow Coma Scale score of 13-15 ◦Post Traumatic Amnesia not greater than 24 hours Brain Injury, Traumatic: Damage to living brain tissue caused by a force from outside of the body. It is usually characterized by a period of altered consciousness (amnesia or coma) that can be very brief (minutes) or very long (months/indefinitely). The specific disabling condition(s) may be orthopedic, visual, auditory, neurologic, perceptive/cognitive, or mental/emotional in nature. The term does not include brain injuries that are caused by strokes, drugs, cancer, diseases, birth defects, etc.

Brain Stem: The lower extension of the brain where it connects to the spinal cord. Neurological functions located in the brain stem include those necessary for survival (breathing, heart rate) and for arousal (being awake and alert).

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Catheter: A flexible tube for removing fluids from, or introducing fluids into, a cavity of the body. Frequently used to drain the urinary bladder (Foley catheter).

Cerebellum: The portion of the brain that is located below the cortex. The cerebellum coordinates movement.

Cerebral-spinal Fluid (CSF): Liquid made by the body which fills the ventricles of the brain and surrounds the brain and spinal cord.

Clonus: A sustained series of rhythmic jerks following quick stretch of a muscle. Can also be called a muscle spasm.

Cognition: Knowing, being aware, thinking, and remembering ideas, thoughts, and perception. This includes understanding and reasoning.

Coma: Unconsciousness from which the patient cannot be awakened and/or aroused, even by powerful stimulation; lack of any response to one’s environment. Defined clinically as an inability to follow a one-step command consistently; Glasgow Coma Scale score of 8 or less.

Communicative Disorder: An impairment in the ability to receive and/or process a symbol system, represent concepts or symbol systems, and/or transmit and use symbol systems. The impairment may be observed in disorders of hearing, language, and/or speech processes.

Comprehension: Understanding of spoken, written, or gestural communication.

Concentration: Being able to keep attention on a task over a period of time; remaining attentive and not easily distracted.

Concrete Thinking: A style of thinking in which the individual sees each situation as unique and is unable to see the similarities between situations. Language and perceptions are interpreted literally.

Concussion: The common result of a blow to the head or sudden deceleration usually causing an altered mental state, either temporary or prolonged. Physiologic and/or anatomic disruption of connections between some nerve cells in the brain may occur. Often used by the public to refer to a brief loss of consciousness.

Confabulation: It is a memory disturbance in which a person confuses imagined scenarios with actual memories with no intent to deceive.

Confusion: A lack of understanding. A person may not understand what is happening, what they should be are doing, who someone is, and/or what something is.

Conjugate Movement: Both eyes move together in the same direction. When one eye moves toward the midline (crossed eyes) is a disconjugate movement.

Consequence: The effect, result, what happens after something that occurred earlier. For example; a brain injury is a consequence of a person hitting their head.

Contracture: Loss of range of motion in a joint due to abnormal shortening of soft tissues.

Contrecoup: Bruising of brain tissue on the side opposite of where the head was hit.

Cortex: The largest part of the brain and is made up of two cerebral hemispheres which are connected by a band of tissue. This area is where most “thinking” and cognitive functioning comes from. It can also be called the cerebrum.

CT Scan/ Computerized Axial Tomography: A series of X-rays taken at different levels of the brain that allows the direct visualization of the skull and intracranial structures. A scan is often taken soon after the injury to help decide if surgery is needed. The scan may be repeated later to see how the brain is recovering.

Decerebrate Posture (Decerebrate Rigidity): Exaggerated posture of extension or flexion of the arms and legs. This indicates a severe brain injury.

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Decorticate Posture (Decorticate Rigidity): Exaggerated posture of upper extremity flexion and lower extremity extension as a result of a brain injury.

Decreased Insight: Patient may not recognize problems he or she is having or may attempt to rationalize or minimize problems.

Depression: A medical condition that affects the way a person feels, thinks, and acts. This can be because of a situation or something a person is dealing with. A person may be understandably sad or depressed because of his injury.

Diplopia: Seeing two images of a single object; double vision.

Disinhibition/Lack of inhibition: Inability to suppress (inhibit) impulsive behavior and emotions.

Disorientation: Not knowing where you are, who you are, or the current date. Health professionals often speak of a person that does not have any problems as being oriented “times three” which refers to person, place and time.

Dysarthria: Difficulty in forming words or speaking them because of weakness of muscles used in speaking.

This may include slurred speech, talking too fast or slow, and/or improper pitch.

Dysphagia: A swallowing disorder where a person has difficulty in oral preparation for the swallow, or in moving material from the mouth to the stomach. This also includes problems in positioning food in the mouth.

Edema: Collection of fluid in the tissue causing swelling.

EEG (Electroencephalogram): A procedure that uses electrodes on the scalp to record electrical activity of the brain. Used for detection of epilepsy, coma, and brain death.

Emotional Lability: Exhibiting rapid and drastic changes in emotional state (laughing, crying, and anger) without an apparent reason.

Endotracheal Tube: A tube that serves as an artificial airway and is inserted through the patient’s mouth or nose.

It passes through the throat and into the air passages to help breathing. To do this it must also pass through the patient’s vocal cords. The patient will be unable to speak as long as the endotracheal tube is in place. It is this tube that connects the respirator to the patient.

Flaccid: Lacking normal muscle tone; limp.

Flexion: Bending a joint.

Foley Catheter: This is a tube inserted into the urinary bladder to remove urine.

Frustration Tolerance: The ability to persist in completing a task despite apparent difficulty. Individuals with a poor frustration tolerance will often refuse to complete tasks even if they are not difficult. Angry behavior, such as yelling or throwing things while attempting a task is also indicative of poor frustration tolerance.

Generalization: Being able to carry learning from one setting into another (learning to transfer from the wheelchair to the bed in the hospital; then being able to do the same at home).

G-Tube (Gastric Tube): A tube inserted through a surgical opening into the stomach. It is used to give a person liquids, food, or medication into the stomach when the patient is unable to take these by mouth.

Glasgow Coma Scale: A standardized scale/system used to assess the how much brain impairment a person has and to identify the seriousness of injury in relation to outcome. The system involves three determinants: eye opening, verbal responses and motor response. Scores run from a high of 15 to a low of 3. Persons are considered to have experienced a ‘mild’ brain injury when their score is 13 to 15. A score of 9 to 12 is considered to reflect a ‘moderate’ brain injury and a score of 8 or less reflects a ‘severe’ brain injury.

Head Injury: Refers to an injury of the head and/or brain.

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Hematoma: The collection of blood in tissues or a space following rupture of a blood vessel.

Hematoma, Epidural: the collection of blood is outside the brain and its fibrous covering (the dura), but under the skull.

Hematoma, Subdural: The collection of blood is between the brain and its fibrous covering (dura).

Hematoma, Intracerebral: The collection of blood is in the brain tissue.

Hematoma, Subarachnoid: Around the surfaces of the brain, between the dura and arachnoid membranes.

Hemianopsia/Hemianopia: Visual field cut. Blindness for one half of the field of vision. This is not the right or left eye, but the right or left half of vision in each eye. See also vision after head injury.

Hemiparesis: Weakness of one side of the body.

Heterotopic Ossification (HO): Extra bone that sometimes forms after an injury, in the soft tissue. It can decrease range of motion and flexibility or it can cause pain and fevers.

Hydrocephalus: Enlargement of fluid-filled cavities in the brain.

Hypoxia: Not enough oxygen reaching the tissues of the body.

Impotence: Not being able to get an erection, erectile dysfunction.

Impulsivity: Acting suddenly without considering the consequences. Such as getting out of bed to go to the bathroom and not calling for assistance, but they are not strong enough to walk.

Incontinent: Inability to control bowel and bladder functions. Many people who are incontinent can become continent with training.

Inflexibility: The person may find it very difficult to make any changes in his or her daily routine, so they may not be willing to try something different.

Insight/Judgement: Evaluating information and making a decision that is safe and appropriate for the situation.

Labile/Lability: State of having notable any potentially rapid changes in emotion. Such as, uncontrolled laughing or crying.

Lack of Inhibition: Due to the injury, systems in the brain that monitor behavior can be impaired. A Person may no longer be able to stop oneself from inappropriate behavior. He may be very angry and hostile, use profanity frequently, or make inappropriate sexual remarks.

Lack of Initiation: A person may find it very difficult to initiate action, even though he may know what to do.

Leg Bag: A small, urinary drainage bag that can be tied to the leg and collects urine. It is connected by tubing to a catheter inserted into the urinary bladder.

Locked-in Syndrome: As disconnection of the motor cells in the lower brain stem and spinal cord that normally control signals issued by the brain. The person is completely paralyzed and mute (cannot talk), but able to understand everything; communication may be possible by code using blinking, or movements of the jaw or eyes, which can be spared or not affected by the injury.

Magnetic Resonance Imaging (MRI): A type of diagnostic radiography using electromagnetic energy to create an image of soft tissue, central nervous system and musculoskeletal systems.

Memory: Being able to remember information from the past and day to day.

Memory, Episodic: Memory for ongoing events in a person’s life.

Memory, Immediate: The ability to recall numbers, pictures, or words immediately following presentation.

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Patients with immediate memory problems have difficulty learning new tasks because they cannot remember instructions. With immediate memory a person needs to be able to concentrate and pay attention.

Memory, Long Term: In neuropsychological testing, this refers to recall thirty minutes or longer after presentation.

It requires a person to be able to store and retrieve information which exceeds the limit of short term memory.

Memory, Short Term: Primary or ‘working’ memory is a limited capacity system that holds up to seven chunks of information over periods of 30 seconds to several minutes, depending upon the person’s attention to the task.

Motor Control: Being able to control the timing and amount of contraction the muscles of the body use for smooth and coordinated movement. This regulation is carried out by operation of the nervous system.

Muscle Tone: Used in clinical practice to describe the resistance of a muscle to being stretched. When the peripheral nerve to a muscle is severed, the muscle becomes flaccid (limp). When nerve fibers in the brain or spinal cord are damaged, the balance between facilitation and inhibition of muscle tone is disturbed. The tone of some muscles may become increased and they resist being stretched—a condition called hypertonicity or spasticity.

Nasogastric Tube (NG Tube): A tube that passes through a person’s nose and throat and ends into their stomach in order to give them food, liquids and medications. It can also be used to remove stomach acids if needed.

Neglect: Paying little or no attention to something.

Neologism: Nonsense or made-up word used when speaking. The person often does not realize that the word makes no sense.

Neuropsychologist: A psychologist who specializes in evaluating (by tests) brain/behavior relationships, planning training programs to help the person with a brain injury return to as close to normal functioning as possible and recommending alternative cognitive and behavioral strategies to minimize the effects of brain injury.

Often works closely with schools and employers as well as with family members of the injured person.

Nystagmus: Involuntary horizontal, vertical or rotary movement of the eyeballs.

Orientation: Awareness of one’s environment and/or situation, along with the ability to use this information appropriately in a functional setting. Knowing who you are, where you are, what day it is, etc.

OT: Occupational Therapy Perception: The ability to make sense of what one sees, hears, feels, tastes or smells. Perceptual losses are often very subtle, and the patient and/ or family may be unaware of them.

Perseveration: Becoming “stuck” on one word or task and not able to switch back and forth or move on to the next word or task.

Plateau: A temporary or permanent leveling off in the recovery process.

Post Traumatic Amnesia (PTA): A period of hours, weeks, days or months after the injury when the patient exhibits a loss of day-to-day memory. The patient is unable to store new information and therefore has a decreased ability to learn. Memory of the PTA period is never stored; therefore things that happened during that period cannot be recalled. This may also be called Anterograde Amnesia.

Posture: The way a person holds their body while sitting or standing. Injury to the nervous system can impair the ability to maintain normal posture, for example holding up the head.

Pre-Morbid Condition: Characteristics of an individual present before the disease or injury occurred.

Problem-Solving Skill: Ability to consider all the methods to solving a particular problem and then being able to choose the best possible solution. Individuals with deficits in this skill may become “frozen” when faced with a problem. By being unable to think of possible solutions, they may respond by doing nothing.

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Prognosis: The likely or expected development of a disease or injury, and if or how much a person is expected to recover.

Proprioception: The sensory awareness of the position of body parts with or without movement.

Psychological Disorders (also known as Mental Disorders): Wide range of conditions that affect mood, thinking and behavior.

PT: Physical Therapy Range of Motion (ROM): Refers to movement of a joint (important to prevent contractures).

Reasoning: Ability to think and reach conclusions in an orderly, rational way.

Reasoning, Abstract: Mode of thinking in which the individual recognizes a phrase that has multiple meanings and selects the meaning most appropriate to a given situation.

Reasoning, Concrete: The ability to understand the literal meaning of a phrase.

Reasoning, Sequencing: The ability to organize information or objects according to specified rules, or the ability to arrange information or objects in a logical, progressive manner. Nearly every activity, including work and leisure tasks, requires sequencing. For example, when cooking certain foods, ingredients must be added and mixed in a specified order; in dressing, undergarments must be put on prior to outer garments.

Seizure: When nerve cells in the brain misfire. The misfire may remain in one area of the brain or spread to the entire brain. It usually lasts only a few minutes. There may be loss of consciousness, loss of bowel and bladder control and tremors. May also cause aggression or other behavior changes.

Selective Attention: Being able to tell the difference between two or more kinds of stimulation, and focus on one by choice.

Sensation: Feeling stimuli which activate sensory organs of the body, such as touch, temperature, pressure and pain. Also seeing, hearing, smelling and tasting.

Sensorimotor: Refers to all aspects of movement and sensation and the interaction of the two.

Sensory Integration: Interaction of two or more sensory processes in a manner that enhances the adaptability of the brain.

Sequencing: Following steps in the correct order to complete a task accurately.

Shearing: The tearing of brain matter as it shifts and rotates, causing damage Shunt: A surgically-placed tube running from the ventricles of the brain to decrease fluid in the and puts it into the abdominal cavity, heart, or large veins of the neck.

Skin Breakdown (Pressure Sore/Pressure Injury): Also called a pressure area, bed sore, or skin opening. A discolored or open area of skin caused by pressure. Common areas most prone to breakdown are buttocks or backside, hips, shoulder blades, heels, ankles and elbows.

SLP: Speech-Language Pathologist Spasticity: An involuntary increase in muscle tone (tension) that occurs following injury to the brain or spinal cord, causing the muscles to resist being moved. Characteristics may include increase in deep tendon reflexes, resistance to passive stretch, and clonus.

Stimulation: Something that stirs up brain activity. This includes things like bright lights and/or loud noises.

Subdural: Means beneath the dura (tough membrane) covering of the brain and spinal cord.

Tactile Defensiveness: Being overly sensitive to touch; withdrawing, crying, yelling or striking when touched.

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Tracheostomy: A temporary surgical opening at the front of the throat providing access to trachea or windpipe to assist in breathing.

Tracking, Visual: Being able to follow an object as it moves through space with their eyes.

TRec: Therapeutic Recreation Tremor, Intention: Course, rhythmical movements of a body part that get worse the harder a person tries to control them.

Tremor, Resting: Rhythmical movements that happen when a person is at rest and may be diminished when a person is moving on purpose.

Unilateral Neglect: Paying little or no attention to things on one side of the body. This usually occurs on the side opposite from the location of the injury to the brain because nerve fibers from the brain typically cross before innervating body structures. In extreme cases, the patient may not bathe, dress or acknowledge one side of the body.

Urinary Tract infection: When bacteria have reproduced to a large number in the bladder. This can cause fever, chills, burning on urination, urgency, frequency, incontinence or foul smelling urine.

Verbal Apraxia: Impaired control of proper sequencing of the muscles used in speech (tongue, lips, jaw muscles, vocal cords). These muscles are not weak but their control does not work.

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The Craig Hospital Brain Injury Program Section VIII: Additional Information Comments/Questions For My Team:

Team Responses:

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For My Team:

Team Responses:

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Patient and Family Pass Information Types of Passes/Pass Hours/Required Education On Campus Pass – this is needed to travel off home unit without staff • • • • • • • •

West Building East Building T-Rec on the first floor of the East building All patios directly outside patio doors Sidewalk to garden T-Rec grill area Healing garden or ramp outside of hospital main entrance Swedish grounds outside the cafeteria

Education needed Physical/Occupational Therapy  Fall prevention  Weightshifts  Wheelchair management and parts Respiratory Therapy (if appropriate)     

Suction class Manual resuscitator Ventilator alarms Battery charging/Power sources Assisted cough

Nursing (education provided depends on individual needs)        

Restraint safety Swallowing precautions Autonomic Dysreflexia (video, verbal and test) Bladder (video, verbal and test) Bowel (video, verbal and test) Seizure (video, verbal and test) Skin (video, verbal and test) Introduction to SCI (video, verbal and test)

Off Campus Pass/No Car (physician may order one or more of the following)  T-Rec Outings  Craig Hospital Patient and Family Housing (Apartments)

 Off campus NO CAR • Patient and Family Housing • Anywhere that can be reached without a private vehicle. No public transportation unless ordered by Physician.

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Education Needed Physical/Occupational Therapy     

Curb cuts Street crossing Up and down curbs Up and down stairs (if needed) Falling – call 911

Respiratory Therapy (if appropriate)    

Emergencies – call 911 Respiratory Medications Humidified systems Ventilator settings

Nursing  Demonstrates understanding and skill in skin, bowel, bladder management  Demonstrates knowledge of medications: Why? When? How?  Verbalize signs and symptoms of AD and what to do for AD  AD card  Verbalize signs and symptoms of seizure and what to do if a seizure occurs

Off Campus Pass with Public Transportation or Hospitality Van (no staff)  All education that is needed for Off Campus/No Car pass Therapeutic Recreation/Physical/Occupational Therapy  Use of Tie downs in vehicles

Off Campus with Car Pass  Motor vehicle transportation with trained family Education Needed (must have all education checked off plus the following) Physical/Occupational Therapy  Car/vehicle transfer • Car • SUV/Truck • Accessible Van  Weight shifts in car  White belt/safety belts  Cushion management  WC assembly and breakdown

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Pass Information Sheet In order to obtain a patient pass without staff supervision, please be aware of the following…

Craig Hospital is not responsible for you medically while you are out on pass without Craig staff.

Going out on pass is not guaranteed even if there is an order. Pass privileges are dependant on the discretion of the RN that day, your medical condition, and the appropriate use of pass privileges.  Your physican must write an order in your chart approving you are medically safe for a pass. o This must be done for each level of pass  On campus  Off campus – no car  Off campus with public transportation  Off campus with a car  You must receive training by all disciplines in order to leave the hospital safely.  If you need to take medications on pass, a Pass Medication request form needs to be filled out 24hrs in advance or by 2pm on Friday for Sunday passes. Some medications require a written order from your physician.  Check out and in at the nurses station.  You need to schedule your personal care with nursing BEFORE going out on pass, if you get back after 9pm cares are not guaranteed.  In case of minor issues, call Craig Hospital at 303-789-8000  In case of emergency, call 911 for assistance.  If a person is wearing restraints, family needs to be trained before taking that person out on pass.

Pass Hours • Sunday – Thursday must return by 9pm.

• Friday and Saturday must return by 12:00 midnight. o Returning after midnight may affect insurance coverage.

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Seizure Management Knowledge Assessment Nursing Department 1. Generalized Seizures: (Grand mal, Absence, Atonic or Myoclonic seizures). This type of seizure involves the entire brain. What might happen to the person during a generalized seizure?

Choose 4 ___Loss of consciousness/passing out ___Continues talking without interruption ___Stiff, jerking muscles movements ___Will remember what happened ___May have bladder or bowel accidents ___Blank stare

2. When out in the community or at home, these can be done to keep a person safe during a seizure: Choose 3 ___Sit them on a chair ___Clear the area ___Call 911 ___Turn on bright lights ___Loosen clothing ___drive them to the nearest Hospital

3. During a generalized seizure, the best position for the person’s safety is: Choose 1 ___On their stomach ___In a side lying position ___On their back with legs elevated ___In a comfortable chair

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4. After a seizure a person may: Choose all that apply ___Need to rest or sleep for a while ___Be confused ___Have a headache ___Feel weak ___Have a hard time speaking ___Have previous problems from their brain injury which may return for a short time

5. If you are in or on the Hospital grounds, what do you do if a person is having a seizure?

Write answer __________________________________________________________________________________ __________________________________________________________________________________ __________________________________________________________________________________

True-False Questions 6. Anyone who has experienced a brain injury will have seizures.

T______ F______

7. A partial seizure may progress to a generalized seizure.

T______ F______

8. Partial Seizures involve only part of the brain.

T______ F______

9. Anticonvulsant or antiepileptic medications should be changed or stopped only by a doctor.

T______ F______

10. Putting a hard object in a persons’ mouth that is having a seizure is OK and safe.

T______ F______

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Reducing the Risk of Seizures There are a number of ways to assist a person with a brain injury to reduce the risk of seizures occurring after discharge from Craig Hospital. Speak with a Craig Hospital doctor to find out precautions and restrictions directly related to your family member or friend.

In general, certain safety precautions must be followed to reduce the risk of seizures occurring.

Please review the following list and discuss with your Craig Hospital Nurse.

• Take medications as prescribed • Have blood drawn & checked as ordered • Avoid alcohol intake • Limit caffeine and other stimulating drinks • Reduce stress and fatigue • Do not swim alone • Avoid heights (climbing ladders, trees, rooftops) • Wear head protection and pads when biking • No driving of vehicles or heavy equipment • Take showers instead of baths • Additional precautions as noted: ________________________________________________________________________________ ________________________________________________________________________________ ________________________________________________________________________________ ________________________________________________________________________________

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© Craig 2016 All Rights Reserved

Speech/Nutrition • Trach management/suctioning • Swallow precautions • Dietary restrictions • Communication strategies

Vision • Exercises

Shower • Set-up of environment prior to transfer • Repositioning on shower chair/bench • Assist with bathing • Monitor sitting balance throughout • Seated weight shift for hygiene

Toileting • Set-up/transfer to toilet • Clothing management • Peri-hygiene and cleansing on commode • Bowel Program (if needed) • Condom catheter use ◦Placement and removal ◦Day/Night bag change and clean • Invol. cleanup

Care/Supply Management • G tube feeding • Oxygen and trach care • Arm and hand splints • Leg boots • Hospital bed management

Administering Medications • Reason for medication • What it looks like • Dosage/frequency

Skills 



Skills

Additional Items • • • •

Home Programs and Providers • Home schedule • Physical Therapy Program • Occupational Therapy Program • Speech Therapy Program • Primary Care provider established • Home pharmacy established • Home health agency set up

Transfers • Bed/chair • Chair/shower chair or bench • Sliding board • Floor transfers • Lift and sling • Car transfers

Wheelchair Management • Positioning • Accessory adjustments • Operation • Maintenance • Breakdown for travel • Cushion management

Bed Positioning • Padding in Bed • Turning • Skin inspection/wound care • Weight shifts in wheelchair

ADL routine • Dressing • Washing face • Putting on deodorant • Brushing teeth

DISCHARGE SKILL CHECKLIST 



Provided as a courtesy of Craig 3425 South Clarkson St. Englewood, Colorado 80113 craighospital.org

Therapeutic Recreation Department at Craig Location: 1st floor, east building Phone: extension 8225 (303-789-8225) Hours: open 8:00am-8:00pm M-F (9:00 on Tuesdays), 10:00am-5:00pm Saturday and Sunday; Usually closed 12:00pm-1:00pm for lunch.

Staff: You will be assigned a primary recreation (T-Rec) therapist who will work with you throughout your stay.

There are additional therapist you will interact with during activities and outings.

Goals: As part of your therapy team we will use your leisure interests to work on the goals and skills you are working on in all of your other therapies, getting out into the community to practice the skills, organize how you spend your free time in the evenings and on the weekends.

Your Therapeutic Recreation Experience:

• Your therapist will schedule you for one on one appointments and co-treatments with your other therapists.

• We also offer group activities and outings through the general recreation calendar.

• You can sign up for activities and outings on the sign up board in T-Rec (see below for more information).

Sometimes the therapeutic recreation room can be overwhelming and overstimulating. If you would like to participate in an activity, but it is too much, staff can set you up in a quieter, less distracting environment or schedule one on one time to complete the activity.

In-house Activities and Community Outings:

• Sign-up for an unlimited number of in-house activities in the recreation room, at any time.

• Activities requiring appointments (facials, manicures, virtual reality, open swim), submit requests to T-Rec staff.

• Outing requests must be submitted to T-Rec staff. Selection for the activity will be based on individual therapeutic value, doctor’s approval and submission date.

Facilities:

• Entertainment Room (available for use with advance notice; 110” projector TV) • Digby Room/Grill (available for use with advance notice; full kitchen and outdoor grill – Requires Off-Campus Pass) • Swimming Pool (available by appointment with your recreation therapist) • Greenhouse and Outdoor Gardens Courtesy Van:

• Wheelchair accessible transportation provided by Craig Hospital volunteers (restrictions may apply).

• Pass for an independent outing is required.

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Pet Visits:

• Dogs may visit with pre-approval and arrangements through T-Rec. • Specific vet documentation is required (restrictions may apply). Please inquire with T-Rec staff for details.

Equipment/Resources (some may be checked-out):

Adaptive Equipment:

• Pool Table

• Recumbent Cycles

• Ping Pong Table

• Archery

• Foosball

• Fishing

• Air Hockey Table

• Hunting

• Dart Board

• Canoes/Kayaks

• Arts and Crafts

• Gardening

• Board Games & Cards

• Golf Cart/Paragolfer

• Video Games

• Bowling

• Full Kitchen

• Riding Saddle

• Bocce Ball

• Photography

• Cornhole/Bags

• Skiing

• Movies and Books

• All-terrain Wheelchairs

• Blow Darts

• Sport Court Wheelchairs

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