trudel and nelson

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Published on October 1, 2007

Author: Danielle

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Aging & Brain Injury: Coping & Wellness Audrey Nelson, MS:  Aging & Brain Injury: Coping & Wellness Audrey Nelson, MS A Personal Perspective from a survivor, support group facilitator and a caregiver Has our advocacy been working? :  Has our advocacy been working? National Council for Independent Living (NCIL) conference last week Legislative priorities Marches on the Capitol demanding community care & real choices Legislative visits The Brain Injury Association has done this too What is different? Saturday I attended a funeral . . .:  Saturday I attended a funeral . . . Not what I had planned for my Memorial Day Weekend For the child of a High School classmate Crystal was born 21 years ago and given 3 weeks to live. She had massive brain damage and constant seizures. But, I am so glad I went-it was the most powerful celebration of a life I have ever been to. Why her? By Erma Bombeck (as read at Krystal’s funeral):  Why her? By Erma Bombeck (as read at Krystal’s funeral) God passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one God? She's so happy." "Exactly," smiles God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel." "But has she patience?" asks the angel. "I don't want her to have too much patience or she will dorwn in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." "I watched her today. She has that feeling for self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give here has her own world. She has to make her live in her world and that's not going to be easy." "But, Lord, I don't think she even believes in you." God smiles, "No matter. I can fix that. This one is perfect - she has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it! I will permit her to see clearly the things I see... ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side." "And what about her patron saint?" asks the angel, his pen poised in mid-air. God smiles, "A mirror with suffice." The Worst Question :  The Worst Question How long did it take you to recover? My Life then . . .:  My Life then . . . I had a depressed skull fracture, a penetrating injury to my right frontal lobe with with bone and glass imbedded in brain tissue I could not remember what I or anyone else just said nor could I think of the words to say what I wanted I got angry easily and at times was violent TV pictures moved too fast and reading was impossible I felt that everyone was keeping the big secret that I was “retarded” now. Denial Isn’t Always Bad:  Denial Isn’t Always Bad I was a college student! I realized I wouldn’t be able to work and go to school, so I enrolled in a public University My Neurosurgeon did not think this was a good idea-right frontal lobe and all Falls & stumbles My life now . . .:  My life now . . . “Her brain is broken” I’m hungry Housework/chores Staff reminders Fatigue Always wondering if I’m not “aware” Reading My friends with injuries . . . :  My friends with injuries . . . Sherry-2 years ago was diagnosed with a brain tumor Cheryl-porous bones due to long term seizure and steriod medications Patsy-Dystonia 6 of the 7 co-founders of Fairhaven Institute have been diagnosed with MS We think . . . :  We think . . . There may be a Post TBI syndrome that is magnified at menopause. There may be a great cost to our phenomenal recovery-over stress More research needs to be done on aging and brain injury Aging and Changes:  Aging and Changes Competency Physical Abilities/needs Developmental Stage Differences Adolescence Menopausal Support Changes Aging Parents/siblings Spouse/Significant Other Children Changes in funding Competency Changes:  Competency Changes May have needed a guardian and now does not Maybe needs a guardian when they did not before Consider variations available: Voting and Marriage rights Guardianship of Estate/Person Asset Development & Management:  Asset Development & Management New programs to reduce disincentives to save & invest through the IRS “Making Work Pay” -Wisconsin’s proposed pilot project Can things get Better 25 years later?:  Can things get Better 25 years later? Margie -25 years post this month -she has lived with us for over five years -initially a very violent & angry person -little to no short term memory -memory challenges led to violence -she recently said to staff, “I know I probably already asked you, but ….” -two weeks ago she cried when a staff person told her she was moving and could no longer work with her -staff that get through her “proving” process grow to love her and consider her a friend. Brain Care :  Brain Care Diet & Exercise! Medication Management-reducing long term consequences/increasing positive effects Sense of belonging/purpose Support Group Support Group Support Group Learning New Things Humor Thank You!:  Thank You! For it is people like you who have cared and continue to care about people like me that mad it possible for my personal journey through the challenges of brain injury. I hope we all can share our experiences and find a common purpose within BIA:  I hope we all can share our experiences and find a common purpose within BIA Together we can find ways to maximize recovery and life long opportunities for all of us. Slide18:  Aging with Brain Injury Long Term Issues Task Force Brain Injury – Interdisciplinary Special Interest Group (BI-ISIG) Aging with Brain Injury: Long-Term Outcomes & Comparisons to SCI and Amputation:  Aging with Brain Injury: Long-Term Outcomes & Comparisons to SCI and Amputation Tina M. Trudel, PhD President, Lakeview Healthcare Systems, Inc. & Lakeview Virginia NeuroCare, LLC Sr. VP of Clinical Services Lakeview Management, Inc. Adjunct Asst. Professor of Psychiatry, Dartmouth Medical School Brain Injury, Aging and the L.T.I.T.F., B.I.-I.S.I.G., A.C.R.M.:  Brain Injury, Aging and the L.T.I.T.F., B.I.-I.S.I.G., A.C.R.M. The A.C.R.M. Long established rehab organization - this year is the 85th annual meeting Multidisciplinary Serves individuals with disabling conditions Mission involves R & D, practice guidelines, advocacy and dissemination of information Publishes Archives of Physical Medicine and Rehabilitation Brain Injury, Aging and the L.T.I.T.F., B.I.-I.S.I.G., A.C.R.M.:  Brain Injury, Aging and the L.T.I.T.F., B.I.-I.S.I.G., A.C.R.M. The B.I. - I.S.I.G. Brain Injury Interdisciplinary Special Interest Group The largest and most active ACRM ISIG Develop practice guidelines, professional standards, input for legislation/regulation Contributed to ADA, CARF standards, evidence-based guidelines for cognitive rehabilitation practice, etc. Conducting brain injury related research Brain Injury, Aging and the L.T.I.T.F., B.I.-I.S.I.G., A.C.R.M.:  Brain Injury, Aging and the L.T.I.T.F., B.I.-I.S.I.G., A.C.R.M. The L.T.I.T.F. Long Term Issues Task Force Reached crossroads 1998 Decision to engage in research project Input from many sources and constituents Health and QOL implications of aging with brain injury Input from professionals, individuals with brain injury, other disability groups, families 1998-2000 - literature review, pilot study 2001-2003 – data collection, analysis & articles Aging with Brain Injury:  Aging with Brain Injury ACRM Research Study Participants Tina M. Trudel, PhD – Study Coordinator & Chair Long Term Issues Task Force Tom Felicetti, PhD - Research Facilitator Mike Mozzoni, PhD - Research Facilitator David Strauss, PhD - Research Facilitator The Graying of America:  The Graying of America By 2030, 20-25% will be 65 or older Previously only 10% lived past age 65, now 80% Aging baby boomers are fastest growing group Medical advances are extending life spans Death rates from injuries continue to decline The Graying of Brain Injury:  The Graying of Brain Injury 55 million with disability in US 7 million 65+ disabled by chronic conditions 5+ million Americans with disability due to BI 80,000 individuals per year experience onset of long term disability due to BI Most brain injuries occur prior to age 30, with 2/3 living 30-40 more years (NIH, 2000) Aging with Brain Injury Issues from 1998:  Aging with Brain Injury Issues from 1998 Physical Seizures Degenerative disorders Incontinence Spasticity Neuroendocrine Pulmonary Balance/Falls Cognitive/Behavioral Memory Behavioral challenges Substance abuse Depression/fatigue Poor preventive care Lifestyle factors Dementia Slide27:  Aging & Brain Injury Comparison Memory impairment & slower new learning Gait & balance problems Ataxia Decreased sensorium Diminished executive functions Reduced appetite and libido Slide28:  Early “Long-Term” Studies United Kingdom studies Brooks, McKinlay & others-Burden increasing over time Oddy et. al.-Divergent appraisal of family vs. person Tate et. al. Scandinavian studies Thomsen 10-15 years post-injury-burden related to issues other than physical disability. Limited social and voc reintegration over time. Slide29:  More Recent Long Term Studies… Dawson & Chipman, 1995 454 participants in Canada Average 13 years post-injury 66% needed some ADL assistance 75% not working 90% limited/dissatisfaction with social integration 47% not talking with others on phone 27% never socialize at home 20% never visit others Recent Long-Term Studies:  Recent Long-Term Studies Colantonio, Ratcliff, Chase & Vernich, in press 286 individuals with TBI followed from consecutive discharges of PA rehabilitation hospital 44 years old and 14.2 years post-DC 96% caucasian Recent Long-Term Studies Cont’d:  Recent Long-Term Studies Cont’d Colantonio, Ratcliff, Chase & Vernich, in press Most common health symptoms: Nervousness, tension Arthritis Sleep problems 5% required basic ADL support 30% assisted with community ADLs 29% employed 42% had been rehospitalized Slide32:  Affective and Emotional Disorders Hibbard et. al. (1998) 51% pre-existing psychiatric disorders 80% post-injury Axis I psychopathology Rosenthal et. al. (1998) Literature review (27 studies) TBI and depression Dynamic relationships among neurological, psychological, social and vocational variables Slide33:  Post-traumatic Psychosis 8.9% - 20% over long term Mild/Mod. injury: 2% - 5% Severe injury: 10% or more Medication complications and long term adverse impact Reduced side effects with newer medications (atypical antipsychotics) Slide34:  Post-traumatic Epilepsy Increased psych complications (33% with temporal or limbic foci) Neurotoxic/recovery effects of meds Mild/moderate injury increases risk 2-5x; severe injury –10x; severe stroke/ penetrating injury increases risk 50x 50% do not remit Slide35:  Dementia Jane & Francel (1996), Lye (2000); Mehta et.al. (1999), Mayeux et. al. (1995), Nemetz, et. al. (1999), Plassman et. al. (2000); Rasmusson et. al. (1995) - Ambiguous data Significant brain injury may be a risk factor for Alzheimer’s Dementia May reduce time to onset of dementia Complications of depression and diagnosis Proposed mechanisms and interactions Slide36:  Aging with Brain Injury - Implications from Literature Chronic condition Anticipate need for 1/3 –2/3 Subjective burden of care often increases over time Persisting problems are physical, cognitive and psychosocial/behavioral Continuum of care needed over time Life Care Planning ACRM and Research Aging with Brain Injury Current Update:  Aging with Brain Injury Current Update The typical respondent: 45.2 years old Injured at age 27.5 Male (77%) 5’8” tall 203 lbs. Not overly concerned about/dissatisfied with health status Aging with Brain Injury – Cause of Injury:  Aging with Brain Injury – Cause of Injury Aging with Brain Injury – Racial Distribution:  Aging with Brain Injury – Racial Distribution Under represents statistical race data Influence of funding mechanisms and relationship with healthcare system Aging with Brain Injury - Marital Status:  Aging with Brain Injury - Marital Status Aging with Brain Injury - Residential Status:  Aging with Brain Injury - Residential Status At Time of Injury: 86% of all survey respondents resided in a private residence Current Status: 33% reside in a private residence 44% reside in a program community site 19% reside in a rehabilitation site, post-acute or residential Aging with Brain Injury - Primary Person(s) in Household:  Aging with Brain Injury - Primary Person(s) in Household At Time of Injury 37% Parents 24% Spouse 21% Alone 1% Other Family 9% Roommates 3% Partner 4% Other Current 48% Residents 22% Alone 13% Spouse 6% Parents 4% Friends 2% Partner 1% Other Aging with Brain Injury - Educational Status:  Aging with Brain Injury - Educational Status Aging with Brain Injury - Employment Before & After:  Aging with Brain Injury - Employment Before & After Aging with Brain Injury - Occupations:  Aging with Brain Injury - Occupations Occupations prior to injury and currently are distributed among various types, with a number of students preparing for work at time of injury Current participants have over-representation of unemployed, responding not applicable or unknown re: occupation (61%) Aging with Brain Injury - Social Integration:  Aging with Brain Injury - Social Integration Social Visits and Phone Calls:  Social Visits and Phone Calls Correlated (p <.05) with: Each other Increased alcohol use Higher education Fewer days in 24-hour care setting Expressed concerns about work Not significant re: perceived health Aging with Brain Injury - Funding:  Aging with Brain Injury - Funding Aging with Brain Injury - Primary Reported Health Problems :  Aging with Brain Injury - Primary Reported Health Problems Chronic pain 17% Ambulation related 16% Musculoskeletal 14% Hypertension 14% Sensory 10% Allergy/autoimmune; Cognitive; GI; Incontinence related; Neurobehavioral; Respiratory; Seizure related all 8-9% Aging with Brain Injury - General Health Rating:  Aging with Brain Injury - General Health Rating Aging with Brain Injury - Differences in Health Perception:  Aging with Brain Injury - Differences in Health Perception Participants with Seizures Negative perceptions of current health BUT Do not expect health to get worse Participants who Consume Alcohol (but not significant for Smokers) Positive perceptions of current health BUT Expect health to get worse Aging with Brain Injury - Seizures:  Aging with Brain Injury - Seizures More participants report anti-seizure medication use than report having had seizures Possibility of anti-seizure prophylaxis or behavioral intervention Aging with Brain Injury - Health Behaviors:  Aging with Brain Injury - Health Behaviors Trends with smoking and drinking: Hypertension Obesity Less health satisfaction Less wellness behavior More likely to do both Question underestimates? Slide54:  Table 1. Body Mass Index (BMI) of BI-ISIG ACRM Survey Participants     Slide55:  Table 2. Weight Classification of BI-ISIG ACRM Survey Participants       Slide56:  Table 3. Hypertension among BI-ISIG ACRM Survey Participants     Aging with Brain Injury - Prevention and Wellness:  Aging with Brain Injury - Prevention and Wellness Generally positive regard for physician helpfulness in maintaining health Wellness activities, regardless of type, appear associated with good health & health perceptions Physical Health Maintenance:  Physical Health Maintenance Last doctor’s appointment – 147 days (SD= 225) Last physical – 257 days (SD= 512) Complete recommended tests based on age and gender - <15% Aging with Brain Injury – Wellness and Health Activities:  Aging with Brain Injury – Wellness and Health Activities None Reported 28% Traditional Interventions Only 37% PT, Gym, Walking, Meds, Quit Habit, Dieting, Therapy, etc. Alternative Interventions Only 10% Herbs, Supplements, Yoga, Clubs, Chiropractic, Meditation, Massage, etc. Combined Interventions 25% Major Disabling Injuries:  Major Disabling Injuries Comparison of Traumatic Amputation and Spinal Cord Injury long term outcome data Traumatic Amputation:  Traumatic Amputation Comparative Long-term Outcome: 40-50 years post-injury life-span 80+% male 75% Caucasian 32 years at time of injury – range Transtibial most common MVA primary cause of injury (car & motorcycle) Traumatic Amputation:  Traumatic Amputation 75% require occupation change 50% end up in lower-paying job 58-90% return to work Half report physical problems related to the amputation 25% bothered by pain; 22% severe Pezzin, Dillingham & MacKenzie, 2000 Amputation vs. salvage:  Amputation vs. salvage 24-84 months post-op, Sickness Impact Profile worsened, with 65% less favorable than general population Outcomes were similar between lower limb amputees and those with limb salvage/reconstruction McKenzie et al., 2005 Spinal Cord Injury:  Spinal Cord Injury 7-10,000 annually MVA, violence, sports and falls Survival after first year following high tetraplegia is 60% at 15 years Hall et. al., 1999 Spinal Cord Injury:  Spinal Cord Injury Outcome improves with lower level of injury and incomplete injury WWI – 80% of soldiers with SCI died within the first two weeks Survival has improved dramatically for injuries resulting in high tetraplegia (17.5%) Spinal Cord Injury:  Spinal Cord Injury $56,800 for average 16 days acute care $95,000 annually for first two years $1,713,267 lifetime for 25 year-old with high tetraplegia Meyers, Andresen and Hagglund, 2000 Gender & Aging with SCI:  Gender & Aging with SCI 60+ men and 60+ women compared Women aging - “accelerated” Men aging - “complicated” Women report greater pain, fatigue, transportation & skin problems Men report greater health, diabetes and adaptive equipment problems Increasingly traditional gender roles with aging McColl et al., 2004 SCI 20+ year studies:  SCI 20+ year studies Improved adjustment in many areas Problem areas: satisfaction with sex life, health issues, fewer visitors, more medical needs, more days hospitalized, more pressure ulcer, increasing needs for suports. Best predictor of future problems was the presence of earlier problems Charliffe et al., 2004; Krause & Broderick, 2005 SCI 20+ year follow-up:  SCI 20+ year follow-up 352 volunteer participants Need for more help with ADLs 32% At least 1 medical complication 85% Constipation 48% Bowel accidents 42% Pressure ulcers 39% Liem et al., 2004 SCI – High Tetraplegia:  SCI – High Tetraplegia Injury of late adolescents/young adults N=128 Almost 20 years post; 85% male Hours PCA: Ind – 64.74 Vent – 135.25 Unpaid: Ind – 31.20; Vent – 10.84 Over 90% live in private home 22% married; 25% employed Hall et. al., 1999 SCI – Medical Issues McKinley et.al., 1999; n= 6,776 to 500 at year 20:  SCI – Medical Issues McKinley et.al., 1999; n= 6,776 to 500 at year 20 Develop Complication Year 10 Year 20 -Abnormal Renal Tests 14.7% 25.9% -Atelectasis/Pneumonia 2.3% 1.7% -Autonomic Dysreflexia 10.6% 17.6% -Deep Vein Thrombosis 0.7% 0.7% -Fracture-long bone 1.3% 2.5% -Pressure Ulcers 23.3% 29.4% -Pulmonary Embolus 0.2% 0.0% -Renal Calculi 2.3% 9.4% SCI – Bowel & Bladder:  SCI – Bowel & Bladder 52% discharged on intermittent cath 14% indwelling urethral catheter Indwelling catheter – higher CA rate Groah et. al., 2002 Constipation, evacuation difficulty, fecal incontinence- abdominal emergencies may cause up to 10% of deaths Diet, medication, equipment, schedule Stiens, Biener Bergman and Goetz, 1997 SCI - Pain:  SCI - Pain 18-63% either musculoskeletal, neuropathic or both; 1/3 severe 25% have initial onset 10+ years post Barrett et. al., 2003 50+% develop upper extremity pain from pushing a wheelchair Pain adversely impacts activity & QOL Widerstrom-Noga et. al., 2002 SCI, Psych and QOL:  SCI, Psych and QOL QOL related to younger, paraplegia, married and longer duration, female, employed, educated, socially integrated Putzke et. al., 2002 High rates of depression, social withdrawal, self-endangerment, anxiety and suicide across various studies – interactions with health and ADLs Kennedy & Rogers, 2000; Krause et. al., 1997; Krause, Kemp & Coker, 2000; 10 Rules for Successful Aging (Aravich & McDonnell, 2005):  10 Rules for Successful Aging (Aravich & McDonnell, 2005) Take care of the heart Cardiovascular risk factors are also Alzheimer’s disease risk factors – diabetes, hypertension, adverse lipid profile and obesity Early diagnosis and treatment of cardiac risk and disease 10 Rules for Successful Aging (Aravich & McDonnell, 2005):  10 Rules for Successful Aging (Aravich & McDonnell, 2005) Exercise the body Protects against heart disease, cancer and stroke Improves respiratory fitness Improves balance and reduces fall risk Elevates mood Benefits cognitive functioning Reduces risk of DVT and emboli 10 Rules for Successful Aging (Aravich & McDonnell, 2005):  10 Rules for Successful Aging (Aravich & McDonnell, 2005) Activate the brain “Neurons that fire together, wire together” Cognitive stimulating activities protect against Alzheimer’s Disease Value of therapies involving the arts, Clubhouse models and hobby development 10 Rules for Successful Aging (Aravich & McDonnell, 2005):  10 Rules for Successful Aging (Aravich & McDonnell, 2005) Feed the brain and body Avoid sugar, highly refined carbs, saturated fats and trans-fats Increase whole grains, fresh fruits/veg for antioxidant and vitamin benefits Mediterranean type diet Omega 3 fatty acids and problems with toxic fish – flax, walnuts, soybeans, canola oil 10 Rules for Successful Aging (Aravich & McDonnell, 2005):  10 Rules for Successful Aging (Aravich & McDonnell, 2005) Promote behavioral health There are 51% more suicides than homicides in the United States Depression rates are higher after TBI Depression is a risk factor for Alzheimer’s Disease Mental illness reduces quality of life and may decrease cognition, activity level, wellness activities, social integration 10 Rules for Successful Aging:  10 Rules for Successful Aging Avoid tobacco, alcohol & drug abuse Alcohol interferes with TBI recovery Alcohol is a risk factor for dementia Tobacco is a major risk factor for heart disease, stroke, cancer, COPD and emphysema Benefits of phytochemicals found in wine can also be attained through diet rich in fresh fruits, vegetables and whole grains. 10 Rules for Successful Aging:  10 Rules for Successful Aging Prevent social isolation Social factors impact neural functions in animal models (rodent studies) Animal models also demonstrate increased rates of dementia in socially isolated mice Social enrichment exercises the brain and body Again, supports Clubhouse models, social groups, community service needs 10 Rules for Successful Aging:  10 Rules for Successful Aging Protect the brain Prevent injuries through helmet and protective equipment use Second impact syndrome – educate and avoid Fall prevention for older adults Protection of the brain also includes sleep Sleep deprivation impairs impulse control, cognition, mood, attention, immune function and abstinence from drugs/alcohol 10 Rules for Successful Aging:  10 Rules for Successful Aging Form advocacy and professional partnerships Forming relationships among the brain injury, behavioral health and Alzheimer’s groups Overlapping issues include: Research needs End of life issues Lack of services Guardianship Respite care Family support Social isolation Stigma 10 Rules for Successful Aging:  10 Rules for Successful Aging Look for greatness in each person The human brain has about as many neurons as there are stars in the Milky Way (100 billion) There are 10x as many glial support cells Each neuron makes connections with thousands of other neurons These patterns of connection change everytime we experience, think, learn or act Thank You – for more info::  Thank You – for more info: Tina M. Trudel, PhD Lakeview Neurorehabilitation Center 244 Highwatch Road Effingham Falls, NH 03814 1-800-473-4221 ttrudel@lakeview.ws

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