MAXIMIZING RECOVERY

AFTER BRAIN INJURY

© 2008 Barbara A. Dively

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CDC Statistics

• 9,900,000 disabled by stroke and trauma

• 7,300,000 with intellectual disabilities

• 5,400,000 disabled by mental illness

• 190,000 paralyzed by spinal cord injury

• $60,000,000,000 annual TBI costs

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In Pennsylvania

7,800 hospitalized and 41,000 emergency room visits each year for traumatic brain injury.

Of children under age 21 in 2004, 32,179 had a prior hospital stay and 180,202 had an emergency room

visit for traumatic brain injury.

458,000 Pennsylvanians live with a disability caused by stroke or traumatic brain injury.

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Changes Over the Years

30 years ago –

50% of those with a TBI died as a result

of the injury.

Today –

22% die as a result of TBI.

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Public Systems Lack Screening & Rehabilitation

• Medical Access• Early Learning• Children, Youth and Families• Special Education • Developmental Programs • Behavioral Health • Substance Abuse in OMHSAS and BDAP• Juvenile Justice• Mental Health Courts, parole, probation• County jails and state prisons

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Special Populations

• Mt. Sinai Brain Injury Screening Questionnaire - 20% of LD children and 30% of SED in Chicago Special Education were actually brain injured. Wayne.Gordon@mountsinai.org.

• Ken Carlson, Minnesota Department of Corrections, 85% of male inmates with one or more brain injuries. 651-361-7286.

• U.S. Army – 1 in 5 returning soldiers

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Functions of the Brain

The best way to

understand the effects of an

injury to the brain

is to understand the

function of each area of the brain

and related systems and

structures.

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The Brain has Two Hemispheres

• The brain is like two halves of an apple

• Each right and left hemisphere has :– a frontal lobe behind the forehead– a parietal lobe near the top of the head– a temporal lobe above the ear– an occipital lobe at the back of the head

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The Lobes of the Brain

• Frontal - planning, organization, problem solving, reasoning, emotions

• Parietal - response to incoming information

• Temporal - attach meaning to sounds

• Occipital - attach meaning to sights

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Brain Stem

• Located at the base of the skull.

• Regulates life-sustaining functions such as blood pressure, heart rate, breathing and body temperature.

• Damage can result in altered consciousness, such as coma.

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Cerebellum

• Located at the back of the head between the skull and brain stem.

• Responsible for muscle coordination and balance.

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Acquired Brain Injury

• an injury to the brain, • occurring after birth, • causing cognitive, behavioral or physical

changes,• not inherited, congenital, or degenerative.

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Non-Traumatic Causes

• Chemotherapy• Stroke• Cardiac arrest• Heart attack• AVM• Aneurysm• Near suffocation • Near drowning• High fever

• Lightening• Near electrocution• Epileptic seizures• Infection• Anesthesia• Brain tumor• Brain/cardiac surgery• Poisoning• Drugs, alcohol

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Traumatic Brain Injury

• an injury to the brain, • occurring after birth,• due to an external force, • causing cognitive, behavioral or

physical changes, • not inherited, congenital, or

degenerative.

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Examples of Trauma

• Shaken baby• Blast and explosions• Playground falls• Bicycle accidents• Skate/snow boarding• Skiing, water skiing• Motorcycle • All terrain vehicles• Surfing

• Motor vehicle crashes• Slip and fall• Stair falls• Team sports • Boxing• Assault, abuse• Gunshot• Falling object • Rollar skating

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Mild Traumatic Brain Injury

• If loss of consciousness occurs, it is very brief,

usually a few seconds or minutes.• The survivor may be dazed or confused.• Permanent physical, cognitive, and/or behavioral

impairments may or may not occur. • Testing or brain scans may appear normal.• A concussion is considered a mild brain injury.

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Moderate Traumatic Brain Injury

• Loss of consciousness may last from a few minutes to a few hours or a day or so.

• Confusion may last days, weeks or longer.

• Permanent physical, cognitive, and/or behavioral impairments may or may not occur.

• Testing or brain scans may appear normal.

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Severe Traumatic Brain Injury

• A prolonged unconscious state or coma lasts days, weeks, or months.

• Survivors can make significant improvements, but are often left with permanent physical, cognitive, or behavioral impairments.

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Severity vs. Outcome

• Severity does not predict the outcome.

• Mild traumatic brain injury may cause difficulties for years to come.

• Severe traumatic brain injury may improve significantly over time.

Every brain injury is unique.

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Neurons Must Network

• Brain injury is an injury to neurons (brain cells) causing a period of confusion, amnesia or loss of consciousness that is followed by physical, cognitive and/or behavioral changes.

• 10,000 million neurons are arranged in networks that control every life function.

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Common Physical Outcomes

• Seizures of all types• Muscular spasticity, paralysis• Double vision, low vision, blindness• Loss of smell, loss of taste• Slurred speech• Headache or migraine• Fatigue, need for more sleep• Balance problems, gait problems

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Common Cognitive Outcomes

• Memory formation & loss• Process & react slowly• Unable to concentrate • Conversation difficult• Word finding difficult• Spatially disorganized• Thoughts disorganized• Judgment impaired• Only one thing at a time

• Unable to initiate• Unable to persevere• Easily distracted • Coaching needed• Cueing needed• Understanding difficult• Unable to follow rules• Decision making difficult• Noise overwhelms

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Common Behavioral Outcomes

• Unable to monitor personal behavior• Increased anxiety (cannot grasp reality) • Depression (reality or chaotic chemistry)• Mood swings (reality or chaotic chemistry)• Difficulty seeing another point of view• Impulsive behavior (especially frontal lobe)• More easily agitated (especially frontal lobe)• Egocentric behaviors (others don’t exist)• Unaware of the cues for expected behavior

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Adjusting to the New Normal

• Physical expectations must change

• Cognitive expectations must change

• Behavioral expectations must change

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Each Situation is Unique

• Each injury results from a event with a specific emotional meaning.

• Each injury causes unique damage.

• Each injury happens to a unique individual.

• Each path to recovery will be unique.

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Brain Injury & Families

• Affects each family differently.

• Modifies the roles and responsibilities of family members.

• Changes in a loved one can be so drastic that it seems a stranger came home from the hospital.

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Family’s Grief & Loss

Possible change in relationships, dreams for the loved one, responsibilities as

caregiver, personal freedom, lifestyle, income and assets.

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Survivors May be Out of Touch

• Nothing has happened.

• I don’t need or want help.

• I will be back to my old life in a few days, weeks, or months.

• No sense of time, day/night, weekday vs. weekend, holidays, weather.

• May misread situations and react too slowly, too little or too strongly.

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Survivors May Feel Lost

• I feel like a stranger on an alien planet with unfamiliar language and customs.

• I feel that I am buried alive.

• I don’t know who I am or who I was.

• I feel totally alone because I don’t recognize faces or remember my friends or family.

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Survivor’s Grief & Loss

Possible loss of identity, self-esteem, self-control, expression/communication,

independence, relationships, mobility, vocational/career identity, productivity,

income and assets.

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Impact on Children

• Within a year, all prior friends are gone.

• Within a year, pre-event achievement no longer ensures school success.

• Maturation is stalled at the event age so deficits become more evident over time.

• No PA Medicaid rehabilitation for children.

• School IEP rarely appropriate and does not focus on rehabilitation or recovery.

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Federal Mandates for Children

• All disabled PA children are Medicaid-eligible.• All Medicaid-eligible children are federally

entitled to all necessary services to ameliorate whatever condition they have according to E.P.S.D.T. §1396(d)(r)(5) up to age 21.

• School children with brain injury and with traumatic brain injury are to be accommodated under §504 and appropriately served within special education under I.D.E.A. as needed.

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Impact on Adults

• Within a year, all prior friends are gone.• Over 90% of marriages dissolve. • The parent/child relationship is damaged. • Careers & educational goals shrink. • Extended family networks are destroyed. • Community roles disappear. • Financial capacity is eliminated.• No PA Medicaid rehabilitation for adults.

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State Rehab for 0.105% of Adults

• DPW Medical Assistance 0

• DPW OBRA Waiver 150

• DPW CommCare Waiver 250

• DOH Head Injury Program 80

Total in rehab 480

Total needing rehab 458,000

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Neurons Repair Slowly

• Maximize brain repair & restoration with rest. • Comprehend & accept strengths & limitations. • Relearn old concepts, habits, & skills. • Master compensatory strategies and/or assistive

technology. • Make new friends. • Create a new life of meaning, joy & value.

COULD YOU DO THIS WITHOUT HELP?

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Restoration – Hyperbaric Oxygen

• Dr. Paul Harch S.P.E.C.T. report at www.abin-pa.org, Education.

• Hospitals provide chamber or treadmill.

• First used for divers with the “bends”

• Medicare and Aetna approve hyperbaric oxygen for many diagnoses.

• Medicaid covers childrens claims with demonstrated improvements.

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Restoration - Hyperbaric Oxygen

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Restoration - Homeopathy

• Journal of Head Trauma Rehabilitation, 14:6, December 1999, p. 521. A randomized, double-blind placebo-controlled, clinical NIH Pilot Study using homeopathy at Spaulding Rehabilitation Hospital, a federal TBI Model Systems facility.

• “The treatment group subjects reported a highly significant reduction on scales measuring difficulty functioning in situations commonly encountered in daily life and a significant decrease in the reported frequency of ten most commonly reported symptoms of MTBI.”

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Restoration - Chiropractic

• Impaired arterial blood flow to the brain as a result of a cervical subluxation: a clinical report. Risley, WB. Journal of the American Chiropractic Association, June 1995, pp.61-63. 15,000 patients. Documented by Doppler studies. Reversed by C-1, C-2 adjustment.

• Report of the State Supervisor of Chiropractors of Kentucky In Connection with Kentucky Houses of Reform, Greendale, Kentucky, Marshall, L.T., Lexington, Kentucky (December 1, 1931). 9/3/1930 (540 boys) to 12/1/1931 (335 boys) with 244 treated, 144 paroled. Teachers asked for a permanent chiropractor and stated that the boys improved in demeanor and performance from the first adjustment. Chiropractic discontinued.

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Stimulate the Brain to Repair

• Assure a relaxed pace.

• Base activities on personal preferences.

• Re-train for prior skills.

• Identify and utilize strengths.

• Teach compensatory strategies.

• Encourage new interests.

• Plan for pleasure every day.

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Promote Rest for Brain Re-wiring

• Initially, the brain is exhausted from struggling with swelling and physical damage.

• Next, the brain works constantly to repair neurons and rebuild neural networks, inefficiently at first.

• Activities of daily living are exhausting. • Periodically, the brain shuts down to streamline

neural networks to improve cognitive efficiency and complexity.

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Plan for Success

• Anticipate stressors

• Avoid or minimize stressors

• Incorporate soothing strategies

• Plan for mutual signals

• Recognize impending meltdown & divert

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Reduce Communication Stress

• Speak slowly.

• Phrase questions for a yes or no answer.

• Accept/offer alternate ways of responding.

• Simplify or offer simple choices.

• Gently divert from difficult topics.

• Remain calm at all times.

• Do not say “No”. Ask questions instead.

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Reduce Performance Stress

• If tasks are not completed, use coaching, small steps, cue cards, timers, etc.

• If tasks are unfamiliar, give easier tasks.

• Eliminate responsibilities that are ignored.

• Rehearse forgotten skills.

• If strong interests exist, assist in pursuing.

• Do not draw attention to failure.

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Reduce Demands on Memory

• For current events, use a memory book.

• For poor future memory, use date book.

• If people or faces are unfamiliar, practice with pictures and remind.

• Use timer, alarm watches, posters, picture cards, computers, etc., for reminders.

• Follow a routine.

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Reduce Environmental Stress

• For frustration, reduce demands.• For confusion in a group, remain close by. • If better alone, assure quiet time alone. • If easily tired, assure rest breaks. • If noise overwhelms, minimize noise. • If reaction time is slow, plan for safety. • Simplify the environment to minimize

visual and spatial confusion & distraction.

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Structure

• Each survivor and family member needs a schedule.

• The environment must be kept organized.• Calendars, notebooks, wall charts, and visual

aids can serve as reminders, but do not overwhelm anyone with too much information.

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Consistency & Repetition

• Remain consistent in what you do

• Remain consistent in what you expect

• Model the behavior you want to encourage

• Provide a feeling of safety through predictability.

• Use frequent repetition to promote new learning.

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Breaking Down Tasks

It is always best to break tasks into steps, whether it be completing paperwork for Social Security Disability or preparing a

meal.

Expecting large projects to be completed all at once is a prescription for failure.

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Minimizing Distractions

Remove distractions

to minimize overstimulation

and cognitive overload.

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Grief Complicates Recovery

• Denial

• Anger

• Bargaining

• Depression

• Acceptance

• Unfolding awareness of loss

• Overlapping & incomplete stages of grief

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Signs of Depression

• Changes in eating habits

• Changes in sleeping habits

• Remarks about the futility of life

• Dwelling on the past

• Excessive time spent in non-active ways like watching too much television

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Anticipate Your Challenges

• Learn to anticipate when you will become overwhelmed (hungry, tired, ill, confused)

• Identify specific situations or events (changes in routine, dealing with difficult tasks or individuals)

• Identify signals that you are becoming upset (facial expressions, body language, choice of words, sighing)

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Anticipating Stressful Events

• Anticipate

• Avoid

• Minimize impact

For example, if large family gatherings or crowded stores are cognitively

overwhelming, you may not want to stay very long.

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Possible Stress Relievers

• eating• closing your eyes

• resting • taking deep breaths

• getting a hug• reading

• TV• taking a walk

• playing solitaire• taking a shower

YES Sometimes

NO Don’t know!

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Make Your Action Plan

• Work together with family or friends to create a action plan for each potentially overwhelming situation - an advance plan will help everyone to remain calm.

• Know when to seek the help of a professional – you don’t have to do it all yourself.

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Build on Your Strengths

• Remain involved in activities to avoid boredom• Stay connected to prevent social isolation• Be as independent as possible• Accept coaching, welcome encouragement and

reward yourself for positive behavior• Understand that everyone may be doing their

best very in difficult circumstances

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Support Systems

Develop a support system for yourself and your family to prevent social isolation.

This could include family, friends, support groups, a mentor, a local church group,

social and recreational groups in the community, and your local Independent

Living Center.

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Get Involved

Daily activities like returning to work, volunteering, taking a class, and

participating in community activities will provide a structured routine, decrease

social isolation, increase self-esteem and promote recovery.

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Emphasize Independence

“Family members or caregivers should let the recovering TBI survivor burn dinner

every night if necessary but step in if the house is burning down.” – Claudia Osborn

Be as responsible as you can, and learn from your mistakes.

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Things to Remember

• Every individual is different, every injury is unique, and improvement happens with time!

• Understand everyone’s current abilities and limitations.

• Listen to your loved ones.• Treat each other in an age appropriate manner.

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Self-Determination

Each person needs to have control over his or her own life.

Without such control, dissatisfaction,

frustration, resentment and depression are likely to occur.

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Golden Rules

• Identify the current physical, cognitive and behavioral limitations.

• Plan and practice your rehabilitative behaviors to match current requirements as guided by the neuropsychologist.

• Fade away your rehabilitative behaviors slowly as the person regains function, but continually assess while gains stabilize.

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Behavioral Assistance

Professionals who can assist you withbehavioral challenges include:

• Neuropsychologists who can assess the relationships between the brain injury, the behavior and cognition;

• Neuropsychiatrists who can prescribe medications to address mood, thinking or behavior.

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A Bureau of Brain Injury?

• 2005 - Brain injury Work Group

• 2006 - Brain Injury Recovery Blueprint including screening, assessment, planning, rehabilitation, training, standards and cross-systems integration for all children, and for adults served in any public service system

• 2007 – DPW considered a Bureau of Brain Injury

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A licensing continuum?

1. Pre-vocational & supported housing for minimally impaired.

2. Structured support (CommCare Waiver).

3. Intense support for minimally functional.

4. LTSR’s (16 beds) for those who are violent or court ordered.

5. Special nursing homes for those in coma or minimally conscious.

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Optimize funding?

• Prevent brain injury.

• Eliminate the two-year Social Security Disability wait for Medicare and add brain injury rehabilitation.

• Private healthcare insurance coverage.

• Re-activate Auto CAT Fund premiums.

• Provide rehab to all children.

• Rehab all adults while in state systems.

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ABIN-PA Programs & Resources

• E-List: frequent emails on brain injury and disability topics.

• InfoLine: free, trained volunteers.• Newsletter: free monthly snail-mail on

organization activities, features.• County Education Programs: free.• Website: brochures, PowerPoints,

resources, support groups.

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RESOURCES

• Acquired Brain Injury Network – 215-699-2139 www.abin-pa.org

• Brain Injury Association – 800-444-6443 www.biausa.org

• Brain Injury Association of NJ – 732-738-1002 www.bianj.org

• Brain Injury Association of PA – 866-635-7097 www.biapa.org

• Brain Injury Help Line & Head Injury Program – 866-412-4755

• CommCare (TBI) Waiver 800-757-5042 • Special Education Consult Line 1-800-879-2301

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CONTACT

Acquired Brain Injury Network of Pennsylvania, Inc.

2275 Glenview Drive

Lansdale, PA 19446-6082

InfoLine 215-699-2139

info@abin-pa.org

www.abin-pa.org