Brain Injury Professional, vol. 3 issue 1

BRAIN INJURY professional vol. 3 issue 1

The official publication of the North American Brain Injury Society

Women’s Issues in Brain Injury Women Caregivers: The Long Term Effects on Health and Wellbeing The Effects of Chemotherapy on Cognition in Breast Cancer Survivors: Implications for Neurorehabilitation My Life After The Injury: A Woman’s Story Women and Sexuality Post-TBI What Does Menopause Have To Do With Traumatic Brain injury?: The Case for Progesterone Health Concerns of Women With Brain Injury Participatory Action Research and Women Living with the Consequences of Brain Injury: A Call to Arms

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contents departments

vol. 3 issue 1, 2006

north american brain injury society

36 Professional Appointments

chairman Robert D. Voogt, PhD treasurer Bruce H. Stern, Esq. family liason Julian MacQueen executive vice president Ronald C. Savage, EdD executive director/administration Margaret J. Roberts executive director/operations J. Charles Haynes, JD marketing manager Joyce Parker graphic designer Nikolai Alexeev administrative assistant Benjamin Morgan administrative assistant Bonnie Haynes

37 New and Noteworthy

brain injury professional

4 Guest Editor’s Message

by Elisabeth Sherwin

38 Conferences BRAIN INJURY professional vol. 3 issue 1

publisher Charles W. Haynes publisher J. Charles Haynes, JD founding editor Donald G. Stein, PhD design and layout Nikolai Alexeev advertising sales Joyce Parker

The official publication of the North American Brain Injury Society

EDITORIAL ADVISORY BOARD Women’s Issues in Brain Injury Participatory Action Research and Women Living with the Consequences of Brain Injury: A Call to Arms What does menopause have to do with traumatic brain injury?: The Case for Progesterone Women Caregivers: The Long Term Effects on Health and Wellbeing Women and Sexuality Post-TBI Health Concerns of Women With Brain Injury My Life After The Injury: A Woman’s Story The Effects of Chemotherapy on Cognition in Breast Cancer Survivors: Implications for Neurorehabilitation

features

Michael Collins, PhD Walter Harrell, PhD Chas Haynes, JD Cindy Ivanhoe, MD Ronald Savage, EdD Elisabeth Sherwin, PhD Donald Stein, PhD Sherrod Taylor, Esq. Tina Trudel, PhD Robert Voogt, PhD Mariusz Ziejewski, PhD

editorial inquiries 8 Women Caregivers: The Long Term Effects on Health and Wellbeing

by Carolyn A. Rocchio 12 The Effects of Chemotherapy on Cognition in Breast Cancer Survivors:

Implications for Neurorehabilitation

by Austin L. Errico, Ph.D., Tina M. Trudel, Ph.D. 16 My Life After The Injury: A Woman’s Story

by Marvel Vena

Managing Editor Brain Injury Professional PO Box 131401 Houston, TX 77219-1401 Tel 713.526.6900 Fax 713.526.7787 Website: www.nabis.org Email: contact@nabis.org

advertising inquiries

18 Women and Sexuality Post-TBI

by Tina M. Trudel, Ph.D.

Joyce Parker Brain Injury Professional HDI Publishers PO Box 131401 Houston, TX 77219-1401 Tel 713.526.6900 Fax 713.526.7787

22 What does menopause have to do with traumatic brain injury?:

national office

The Case for Progesterone

by Donald G. Stein, Ph.D. 28 Health Concerns of Women With Brain Injury

by Margaret A. Nosek, Ph.D. 34 Participatory Action Research and Women Living with the

Consequences of Brain Injury: A Call to Arms

by Candace Gustafson, R.N., Marcia Cooper, and Marvel Vena

North American Brain Injury Society PO Box 1804 Alexandria, VA 22313 Tel 703.960.6500 Fax 703.960.6603 Website: www.nabis.org Brain Injury Professional is a quarterly publication published jointly by the North American Brain Injury Society and HDI Publishers. © 2006 NABIS/HDI Publishers. All rights reserved. No part of this publication may be reproduced in whole or in part in any way without the written permission from the publisher. For reprint requests, please contact, Managing Editor, Brain Injury Professional, PO Box 131401, Houston, TX 77219-1400, Tel 713.526.6900, Fax 713.526.7787, e-mail mail@hdipub.com

BRAIN INJURY PROFESSIONAL

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guest editor’s message Being asked to edit an issue of Brain Injury Professional is an honor and I want to thank the North American Brain Injury Society (NABIS) for the opportunity. A special, heartfelt, thank you goes to Dr. Nathan Zasler for his dedication to this issue, for his support and belief in its respective focus, and for the patience and the sense of humor he extended to me personally as I figured out what needed to be done to bring this endeavor to fruition. For all this and more, my thanks and gratitude. However, the biggest of all honors has been working with the authors of the papers presented in this issue. Several years ago, I think it might have been at the BIAA symposium in Chicago, several women sat around and talked about their experiences living with a traumatic brain injury. I sat quietly and listened. And for the next several years I listened and heard the same things over and over: women were encountering difficulties that they felt were by-products of their injury, but not caused directly by their injury. The articles in this issue address these concerns. I approached each author because I felt he or she had something to say about being a woman and/or living with a brain injury. Carolyn Rocchio offered her perspective on the concerns of women caregivers to individuals with traumatic brain injuries. Austin Errico and Robert Pena’s article on “chemo brain” was suggested by Tina Trudel, who then graciously facilitated it.

While not a traumatic brain injury per se, it is a non-congenital injury that is the by-product of combating cancer. Focusing specifically on women living with traumatic brain injury, I imposed on a dear friend and asked her to author a first-person narrative. Marvel Vena was gracious enough to open a window into her private life. My goal was to identify universal issues, not unique victories. Since very few of us have Marvel’s tenacity and spirit, I was interested less in her amazing successes and the inspiring lessons she learned. Rather I asked her to focus on the difficulties and challenges.

Tina Trudel also suggested issues associated with sexuality, and this resonated with some issues Marvel raised. Another issue I had heard from many women living with brain injury related to the aging process. Anecdotes about early menopause, prevalence of autoimmune diseases etc., led me to impose on Don Stein.

I had heard him speak, and had heard others 4

BRAIN INJURY PROFESSIONAL

speak about the work he was conducting with hormones and TBI. He was one of the authors I cold-called. The epitome of helpfulness, he was gracious enough to adapt a manuscript on HRT to focus on the role of hormones in aging and in brain injury. The other author I cold-called was Margaret Nosek. Margaret has (so far) devoted her career primarily to spinal cord injury, but I sincerely hope that we have now recruited her to the cause of women with traumatic brain injury. Finally, I cajoled Candy Gustafson (who roped in Marvel Vena and Marcia Cooper) to formalize what I had heard them talk about so often; they were to formulate their call to arms to the research community.

My goal was to start the ball rolling – outline key issues and get people talking. It might be serendipity but suddenly the emails started flying. One was to report, with great excitement, about an article by Margaret Nosek on women with TBI that was being informally ecirculated — not realizing it was for this issue!

Another email was the forwarded from Robert Demichelis, a legislative liaison volunteer with Brain Injury Association of America, asking for input on women’s use of healthcare. A third email shared the results of a recently published manuscript in the journal Brain Injury about body image concerns and psycho-emotional health in females with acquired brain injury (Howes, Edwards and Benton, 2005).1 All I can hope for is that this is the beginning. I can ask for no more from the authors who wrote for this issue. They have done their best to establish what issues need to be further investigated and addressed. The challenge is clear – I hope that they, and you, pick up the gauntlet.

Elisabeth Sherwin, Ph.D. Little Rock, AR About the Guest Editor

Elisabeth Sherwin, Ph.D., is an Associate Professor of Psychology at the University of Arkansas at Little Rock. Her interest in traumatic brain injury arose from an encounter with Israeli soldiers who were living with brain injury. When she started teaching college she was struck by the number of students who reported living with a traumatic brain injury. This served a catalyst for her research on prevalence of traumatic brain injury among college students as well as investigations into their adjustment to higher education.

In 2002 she chaired the national symposium of the Brain Injury Association of America. In 2005 she was appointed to the Board of the Journal of Rehabilitation Psychology.

Reference

1. Howes HF. Edwards S. Benton D. Female body image following acquired brain injury. Brain Injury , 19: 403-15, 2005.

nabis note In keeping with its mission of providing timely, cutting edge editorial, this special issue of Brain Injury Professional represents the first time a collection of articles has been assembled specifically on the topic of Women’s Isssues as they relate to brain injury. Dr. Elisabeth Sherwin has done an outstanding job of covering a broad range of subjects on this important issue.

The North American Brain Injury Society would also like to recognize the significant contribution that Dr. Nathan Zasler made to Brain Injury Professional during his time as editor in chief. Dr. Zasler was instrumental in establishing the editorial framework upon which we continue to build. NABIS is indeed grateful for his efforts. In 2005, Dr. Zasler became the Chairman of the International Brain Injury Association. IBIA, a multidisciplinary organization of which NABIS is an affiliate, recently announced that the 7th World Congress on will be held in Jerusalem in June of 2007. To learn more about this important event, visit www.kenes.com/ibia07.

Now in its third year, Brain Injury Professional has the largest circulation of any professional publication on the subject of brain injury and has developed an outstanding reputation for providing high quality articles in an accessible format. Future issues of BIP already in process will focus on Life Care Planning, Pediatrics, Vocational Issues and Spasticity.

We will also be expanding and adding regular features including literature and product reviews, a section covering the people, places and things that shape the field of brain injury, as well as expanding our conference listings and job postings. As always, North American Brain Injury Society welcomes your feedback, please visit www.nabis.org and send your suggestions and comments.

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WOMEN CAREGIVERS:

The Long Term Effects on Health and Wellbeing

by Carolyn A. Rocchio INTRODUCTION

Of necessity, more women than men assume the role of caretaker for persons with brain injury. In general, the public and policy makers are more aware of the family’s or government’s role in managing the care of children and aging adults with special needs than they have about managing the care of those with brain injuries. However, there are large numbers of young to middle aged adult persons with brain injuries whose physical and/or cognitive impairments require up to twenty-four hour caregiving to ensure their medical survival and safety. There is little public awareness about how women caregivers are impacted by this responsibility.

The Centers for Disease Control (CDC) estimate (Langlois et al., 2004) that there are 1.4 million traumatic brain injury (TBI) related deaths, hospitalizations, and emergency department visits in the United States each year. An estimated 80,000 to 90,000 of that number experience permanent disability for which many will require long term support to manage their day to day existence. Males comprise a disproportionate number of injuries compared to females. A larger percentage of these males are between the ages of 15 and 34 years of age, greater than any other age group. Traumatic brain injury (TBI) affects not only the individual with brain injury. It impacts all members of the immediate and extended family (see Smith and Smith, 2000; Degeneffe, 2001; Nabors, Seact and Rosenthal, 2002; Ponsford et al., 2003) As time passes families must draw upon their coping skills to get them through the day. Some are better equipped to manage this than others (see Machamer, Temkin and Dikmen, 2002,

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BRAIN INJURY PROFESSIONAL

Wade et al., 2002; Hoofier, Gilboa and Donovick, 2001 Wade et al., 2001, Wade 1998). The purpose of this article is to provide a voice for all the women who serve as caregivers for individuals with TBI.

INFORMAL SURVEY OF WOMEN CAREGIVERS Sample

What then becomes of the predominately male population of individuals with TBI who are unable to independently return to the community? The author of this article generated and conducted a survey of known women caregivers. Twenty one responses were obtained. Of that number thirteen were mothers, five were wives and three were sisters of persons with TBI. Of the twenty-one responses, all but two of the persons with TBI were male. The recipients of care sustained their injuries between the ages of 15-54, and currently were between the ages of 21 to 72. The number of years post injury ranged from 1-24 years with the average being 8 years.

The intent was to explore the experiences of their caregivers who represented various stages and ages of life. Therefore no effort was made to categorize the extent of residual impairment of the individuals with TBI. The three wives reported that their marriages had survived and the husbands continue to live in the family home. Yet one wife expressed concern that she was in a marriage where the partner was no longer a partner and she was coping with a lot of guilt. Of the unmarried adults with TBI, seven were living independently at the time of injury but have returned to live in the family home and one lives in a specialized facility. The majority require care and/or monitoring

twenty-four hours per day. Many of the caregivers worked outside the home at the time of injury. Although some temporarily stopped working to provide care, most have returned to work. Five women have been unable to return to their employment. Workers Compensation has allowed two of the wives to return to work and freed them of the continuous caregiving.

EXISTING RESEARCH

Notwithstanding the information provided thus far, until recently little attention has been devoted to the effects of long term caregiving of chronic conditions. Researchers from the University of California (Le Beau, 2005) found that chronic stress, as that resulting from long term caregiving, appears to accelerate the aging process. Their findings suggest that chronic stress shortens the life span of cells and can Support create an environment that promotes disease. In a controlled study of The survey indicated that initially there was an outpouring of family mothers caring for chronically ill children and mothers with healthy support. Over time, that support lessened and the women caregiv- children it was noted that the longer a mother provided care for an ill ers felt they were single handedly bearing the burden of care. As ex- child, the higher her stress level, or even her perceived level of stress, pected, family relationships suffered and one family, unable to cope, the greater cellular decline she experienced. Chronic stress comprocompletely severed all extended family ties. Likewise, friends, very mises the immune system cells. These findings also suggest that not supportive in the early stages of recovery, were less available for the only is the aging process hastened, but that the caregiver is likely caregiver as time passed. The demands of care can sidetrack existing to be more susceptible to illness. Scientists have not yet identified friendships and prevent the time and opportunity to develop a new the mechanisms through which stress damages cells but suspect stress circle of friends. And when a social event presented itself, caregivers, hormones such as cortisol may be a factor. Although the survey did for lack of respite care, often had to include the person with TBI in so- not query caregivers about their pursuit of pharmaceuticals or councial situations, compromising the value of the opportunity. However, seling to manage their stress, several respondents volunteered inforsome support was found and caregivers drew ongoing support, infor- mation about their use of prescription drugs to ameliorate symptoms mation and coping skills from TBI support groups and other self help for digestive disorders, depression and anxiety. groups, service providers, religious affiliations and the Internet. Yet Caring for a male with severe cognitive/behavioral deficits elicits this support wasn’t enough to mitigate the impact of the situation. All numerous and unique stressors. Women caring for such men, comrespondents expressed a negative implained more openly about their pact of the injury on their well-being, Each woman has her own burden, be it the mother facing family member’s inappropriate either physically and/or emotionally. her own mortality and knowledge that she will probably social and/or sexual behaviors. not outlive her family member with brain injury; the wife Other female members of the Primary Concerns who must reverse roles with her spouse who was once household often felt unsafe in this setting. This only added to the The debilitating effect of the caregiva partner and is no longer able to fulfill that role as ing was reflected in reports of an exac- before; or the sister who will ultimately be forced into a burden experienced by the woman caregiver. Nearly thirty years ago, erbation of preexisting health condimore active role in the long term care of her sibling.

Lezak (1978) clearly describes the tions, feeling more prone to illnesses not previously troublesome, suffering depression, isolation, and lack sentiments of caregivers who choose to remain in the home, in isolaof time for personal caretaking (see Marsh, 1998a, b; 2002). Chief tion, rather than risk public embarrassment in social situations, or a among their concerns was fear for their future and worries about their survivor who wanders away and becomes lost, or becomes belligerent family member with TBI. Caregivers whose family members were around strangers. The simple act of sitting in a doctor’s waiting room injured for less than three years were more concerned about extent before an appointment can be highly stressful for a caregiver who can of recovery and were still hopeful that their caregiving role may be neither anticipate nor control social lapses (see Knight 1998). Persons time limited. Caregivers with family members who were more than with TBI and residual frontal lobe deficits often deal poorly with stressthree years post injury, were more resigned to the prospect of a long ful situations which would normally generate empathy. Caregivers, term commitment to provide care. They realistically focused their lacking this empathic support and seeing themselves trapped by their concerns on the financial management to meet their family members’ care commitment, in turn become more frustrated, increasing the level changing needs. Other important worries about the family member of stress (see Hoofien, 2001; Marsh 1998 a,b, 2001). with TBI were medical issues, such as seizure disorders, endocrine disorders, unresolved physical conditions and general health main- SUMMARY tenance. They voiced concern about the vulnerability of their family It is not uncommon to find individuals with TBI isolated in private member to being victimized by others, a need for counseling, concern homes with female caregivers overwhelmed by the ongoing demands regarding abuse or use of drugs and alcohol, and lack of meaning- of providing care and support. Each woman has her own burden, be ful day time activity. Planning ahead for financial needs was a most it the mother facing her own mortality and knowledge that she will troublesome issue, with housing a close second. However, of greatest probably not outlive her family member with brain injury; the wife concern was arranging for the provision of care once the primary who must reverse roles with her spouse who was once a partner and caregiver became incapacitated or died. This was particularly trouble- is no longer able to fulfill that role as before; or the sister who will some when coupled with the financial issue. ultimately be forced into a more active role in the long term care of her sibling. Each lives with an accelerated degree of stress that affects her longevity and well being.

Direction In Life The solutions are ellusive. Enhanced public awareness of the Responses were mixed as to whether the injury had changed the caregivers priorities and course of their lives. The majority of the caregivers problem of caregiving in general, and of TBI survivors in particular, answered affirmatively that their priorities were significantly changed. and of women caregivers specifically is being promoted (for example, Approximately half stated that they had no choice but to provide care; see Gail Williamson’s research on the topic). Programs are being thus, they felt the course of their lives had been changed for them by un- developed as a result of the Traumatic Brain Injury Act of 1996, and controllable external circumstances (see Guerriere and McKeever, 1997). grant funds are available to promote changes and enhance services in On a more positive note; many felt they were enriched by the experience existing agencies serving the disability population. On an interperand enjoyed a renewal of faith, increased understanding of and aware- sonal level, caregivers must be supported and recognized as unsung ness about disability, greater appreciation for life, and a newly discovered heroes for their efforts. They should be encouraged to enlist the help interest in advocacy to improve the lives of persons affected by TBI and of family, friends and agencies to provide respite, socialization, and a holistic atmosphere where meaningful counseling can be found, their families (see Machamer, Temkin and Dikmen, 2002).

BRAIN INJURY PROFESSIONAL

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if required. Family education and increased community supports are the key to their managing the long term consequences of TBI and keeping the family whole – physically and emotionally.

Acquired Brain Injury Services Building Relationships Enhancing Lives Our continuum of community-based care for persons with ABI includes:

About The Author

Carolyn Rocchio is a nationally recognized advocate, author, and speaker in the field of brain injury. Her expertise in brain injury developed as a result of a 1982 auto crash in which her son sustained a severe traumatic brain injury. She is the Founder of the Brain Injury Association of Florida and a member of the Traumatic Brain Injury Technical Assistance Center Steering Committee, US Health Resources and Services Administration, Maternal and Child Health Bureau. In October, 2003, she received the James H. Bruce Lifetime Achievement Award from the Florida Department of Health, Brain and Spinal Cord Injury Program for her dedication and commitment to enhancing opportunities and services for persons with brain and spinal cord injuries. In 2004 she was awarded the 2004 John Young Lectureship, Craig Hospital, Englewood, CO. In 2004 her book, Ketchup on the Baseboard, describing her family’s experience with traumatic brain injury, was published

by Lash and Associates Publishing/Training.

REFERENCES

Degeneffe CE, Family caregiving and traumatic brain injury.

Health Soc Work. 26:257-268, 2001.

Guerriere D. McKever P, Mothering children who survive brain injuries: playing the hand you’re dealt. J Soc Pediatr Nurs. 2: 10515, 1997.

Hoofien D. Gilboa A. Vakil E. et al., Traumatic brain injury (TBI) 10-20 years later: a comprehensive outcome study of psychiatric symptomotology, cognitive abilities and psychosocial functioning.

Brain Inj. 15: 189-209, 2001.

Knight RG. Devereux R. Godfrey HP, Caring for a family member with a traumatic brain injury. Brain Inj. 12: 467-481, 1998.

Langlois JA. Rutland-Brown W. Thomas KE, Traumatic Brain Injury in the United States. United States Department of Health and Human Services, 2004.

Le Beau C, Stress. AARP Bulletin. 46(1): 3-4, 2005.

Lezak MD, Living with the characterologically altered brain injured patient. J of Clinical Psychiatry. 39: (592-598), 1978.

Marsh NV. Kersel DA. Havill JH. et al., Caregiver burden at 6 months following severe traumatic brain injury. Brain Inj. 12: 225-238, 1998a.

Marsh NV. Kersel DA. Havill JH. et al., Caregiver burden at 1 year following severe traumatic brain injury. Brain Inj. 12: 10451059, 1998b.

Marsh NV. Kersel DA Havill JA et al., Caregiver burden during the year following severe traumatic brain injury. J Clin Exp Neuropsychol. 24: 434-447, 2002.

Machamer J. Temkin N. Dikmen S, Significant other burden and factyors related to it in traumatic brain injury. J Clin Exp Neuropsychol. 24: 420-433, 2002.

Nabors N. Seacat J. Rosenthal M, Predictors of caregiver burden following traumatic brain injury. Brain Inj. 16: 1039-1050, 2002.

Ponsford J. Olver J. Ponsford M. et al., Long-term adjustment of families following traumatic brain injury where comprehensive rehabilitation has been provided. Brain Inj. 17: 453-468, 2003.

Smith JE. Smith DL, No map, no guide. Family caregivers’ perspectives on their journeys through the system. Care Manag J. 2:27-33, 2000.

Wade SL . Borawski EA. Taylor HG et al., The relationship of caregiver coping to family outcomes during the initial year following pediatric traumatic injury. J Consult Clin Psychol. 69: 406415, 2001 Wade Sl. Taylor HG. Drotar D. et al., A prospective study of long-termcaregiver and family adaptation following brain injury in children. J Head Trauma Rehabil. 17:96-111, 2002.

Wade SL. Taylor HG. Drotar et al., Family burden and adaptation during the initial year after traumatic brain injury in children.

Pediatrics. 102: 110-116, 1998.

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The Effects of Chemotherapy on Cognition in Breast Cancer Survivors: Implications for Neurorehabilitation

by Austin L. Errico, Ph.D., Tina M. Trudel, Ph.D. and Robert Perna, Ph.D, ABPN Introduction Women with a history of breast cancer constitute the largest disease group in the cancer-survivor community. The number of people receiving multiple treatment agents for cancer has increased considerably over the last 10 years. This has resulted in a growing number of survivors who are potentially disabled by the disease, as well as the interventions. In recognition of the growing number of cancer survivors, the National Cancer Institute established the Office of Cancer Survivorship (OCS) in 1996. The OCS has recently prioritized research on the late effects of cancer treatments, including the effects on cognition. While our primary focus is to review relevant research investigating the cognitive side effects from chemotherapy on breast cancer survivors, we also address some issues of concern related to cognitive impairment among woman with breast cancer.

Chemotherapy and Cognition The effects of chemotherapy on cognition have been studied primarily in women with breast cancer because many are relatively young, bright and have high survival rates, making cognitive decline more noticeable. Standard and high dose chemotherapy, immunotherapy, and hormonal treatments have proven neurotoxic side effects. Chemotherapy is associated with long-term cognitive impairments because it can cross the blood-brain barrier and affect neural functioning (Espy, 2002). Clinical trials have distinguished these cognitive impairments from emotional symptomatology also evinced by chemo patients. (van Dam et. al., 1998; Meyer et al., 1998) However, many healthcare professionals continue to attribute these cognitive complaints to anxiety, depression, and menopause. Studies suggest a potential doseeffect relationship between adjuvant chemotherapy and cognitive impairment. This finding is significant since standard chemotherapy regimens have increased in dose intensity during the last 5 years.

More than half of patients receiving immunotherapy (cytokine treatment) have documented cognitive impairments (Meyers and Abbruzzese, 1992) and nearly two-thirds of women treated with chemotherapy develop some level of cognitive problems. Though most recover on their own in the weeks or months after treatment stops, as many as 20% to 25% may develop chronic cognitive problems.

Due to the frequency of cognitive side effects amongst patients with cancer, the term, “chemo brain� is frequently referenced in published accounts of oncology survivorship. A complicating and confounding factor in this research is the fact that cognition is also affected by other symptoms associated with the disease and treatment including 12 BRAIN INJURY PROFESSIONAL

fatigue, nausea, pain, sleep disorder and mood disturbance. Additional confounds include transient cognitive side effects of often coadministered drugs including steroids, immunosuppressive agents, pain medications, and antiemetics (Meyers, 2000).

Research Findings Meyers and Abbruzzese (1992) administered neuropsychological examinations to 47 cancer patients with metastatic disease and significant previous chemotherapy treatment. All patients were at least 3 weeks post treatment, had no history of neurological or psychiatric illness, and had a currently normal CT scan. On examination, 34% had cognitive deficits. Of those who had deficits, 53% had memory deficits, 47% had executive dysfunction, 33% had attention difficulties, and 40% had visual-motor scanning impairments. The authors concluded that neurobehavioral abnormalities should be considered when determining the risks and benefits of cancer treatment.

In another study, Schagen and colleagues (1999) investigated the late neuropsychological effects of adjuvant chemotherapy (i.e.chemotherapy administered in addition to surgery or radiation) given to patients with breast cancer. A battery of neuropsychological tests was administered to 39 patients with breast carcinoma who were being treated with chemotherapy (CMF: cyclophosphamide, methotrexate, and 5-fluorouracil, a common treatment combination). Results were compared with a group of control subjects who received the same surgical and radiation therapy without chemotherapy. Patients were examined a median of 1.9 years after treatment. Impairment in cognitive functioning was found in 28% of the patients treated with chemotherapy and 12% of the patients in the control group. Patients receiving chemotherapy exhibited impairments in attention, mental flexibility, speed of information processing, visual memory and motor function.

Studies have compared the effects of high- vs. standard dose chemotherapy on cognitive functioning in a group of woman receiving adjuvant treatment for high-risk breast cancer (Van Dam, Schagen, Muller et al., 1998). Patients were randomly assigned to receive either high- or standard dose adjuvant chemotherapy plus tamoxifen.

There was also a non-treatment control group of patients. A battery of neuropsychological tests was administered. Cognitive impairment was found, 2 years post-treatment, in 32% of patients treated with high-dose chemotherapy, 17% of patients treated with standard-dose chemotherapy, and 9% of the control patients. Impairments did not correlate with anxiety, depression, fatigue, or time since treatment.

Patients’ self-reported cognitive complaints were found to be more related to their emotional distress than measurable cognitive deficits.

Brezden and colleagues (2000) compared three groups of women Taken together, these studies suggest that cognitive impairments (31 breast cancer patients receiving chemotherapy, 40 breast cancer can occur in the domains of sustained attention (more prone to dispatients who completed chemotherapy, a median of two years earlier, tractions), alternating attention (multitasking), cognitive flexibility and 36 healthy participants). Women receiving adjuvant chemother- (multitasking), memory loss and information processing speed. Anapy (CMF or CEF; cyclophosphamide, epidoxorubicin, and fluoro- ecdotal reports suggest that deficits are often subtle, yet significant uracil) scored significantly poorer than healthy controls on overall enough to limit a person’s productivity and self-sufficiency. Further, cognitive functioning as measured by the High Sensitivity Cognitive these impairments may limit a person’s ability to comply with treatScreen (HSCS). These scores remained significantly lower, even when ment protocols and make informed decisions regarding treatment. results were controlled (via covariates) for age, education level, and menopausal status. Decreased cognitive functioning was positively Implications for Treatment correlated with duration of chemotherapy treatment, but was unre- Research is beginning to explore medication management as a treatlated to other treatment variables or depression, or the aggressiveness ment for chemotherapy-induced cognitive impairments. Treatment of the chemotherapy treatment. There were no significant differences with methylphenidate was associated with dramatic subjective and on measures of emotions as measured by the Profile of Mood States. objective improvements in cognition and daily functioning in 30 Jenkins et al. (2004) examined whether hormone therapy for persons with brain tumors who were on a 10-mg dose (Meyers, breast cancer affects cognition in a sample of 94 women with breast Weitzner, Valentine, et. al. (1998). Improvements were noted in the cancer participating in a randomized trial receiving anastrozole, areas of mood, visual-motor speed, verbal memory, expressive speech tamoxifen alone or combined, and 35 women without breast cancer. function, executive function and fine motor coordination.

Processing speed and verbal memory were specifically adversely efComplementary therapies may help counter the cognitive side fected in women receiving hormonal therapy for treatment of breast effects of treatments. For instance, women who exercise experience cancer. Verbal memory was viewed as particularly sensitive to chang- increased release of endorphins and improved cognitive status. Addies in estrogen levels, a finding often noted in studies of hormone tionally, studies support the benefits of exercise in ameliorating the unreplacement therapy in healthy women. desirable effects of tamoxifen while reducing mortality and morbidity A weakness of current research on ‘chemo brain’ is the over reli- (Cancer Forum, 2002). Researchers at the University of Texas are inance on studies solely examining post-treatment neuropsychological vestigating the effect of the drug Procrit (epoetin alfa) used to treat anefunctioning, without consideration of other pre-treatment or indi- mia for preventing cognitive damage. In repeated studies, researchers vidual variables that may have primary or interactive effects. There is have found that beyond ameliorating fatigue, epoetin alfa diminishes growing evidence that pre-treatment, cell death and has both neuroprocancer-related and genetic factors also Timely diagnosis and education related to chemotherapytective and cognition-enahancing influence cognitive outcome follow- induced cognitive impairment are critical to reduce effects (O’Shaughnessy, 2003; ing chemotherapy for breast cancer. psychological distress and mobilize the additional services O’Shaughnessy et al., 2005).

The Apolipoprotein E epsilon 4 allele and supports that may be needed during the recovery process.

Preliminary research sug(APOE4) genotype well publicized gests that cognitive rehabilitation in the traumatic brain injury, aging and dementia literature appears is beneficial for patients with cognitive dysfunction due to chemoto play a similar role in chemotherapy-induced cognitive dysfunction. therapy. While this area has not been extensively researched, MeyIn a preliminary study of 80 long-term survivors of breast cancer or ers (2000) stated that because cancer patients often have fairly mild lymphoma treated with standard-dose chemotherapy, those with the cognitive problems, they tend to respond well to focused rehabilitaAPOE4 genetic marker demonstrated increased vulnerability to che- tion. Several studies support the efficacy of cognitive rehabilitation in motherapy-related cognitive decline unrelated to depression, anxiety or remediation of these impairments. Cole et al., (2000) followed 200 fatigue (Ahles et al., 2003). In a recent study examining neuropsycho- inpatients that were given comprehensive multidisciplinary inpatient logical profiles of 84 women with non-invasive breast cancer prior to rehabilitation. All patients made gains in motor functioning. Sigchemotherapy, 35% presented baseline neuropsychological impairment nificant gains were also made in cognitive functioning by all patients consistent with levels reported in previous post-chemotherapy studies, except those with intracranial neoplasms, central nervous system dysraising the concern that the impact of cancer itself on neuropsychologi- function, and palliative rehabilitation goals. cal functioning may be underestimated. (Wefel et al., 2004).

In toto, the neuropsychological literature presents a compelling Summary case that chemo brain is a neurological phenomenon. Recent neu- There is a growing recognition that assessment, including neuropsyroimaging studies have bolstered this argument. Researchers at the chological assessment, counseling, and intervention strategies, are of University of California-Los Angeles demonstrated differences in critical importance in enhancing a patient’s quality of life and funcneurometabolic activity between breast cancer patients treated with tioning during and after cancer treatment. Cognitive impairments chemotherapy and those who were untreated (Parker-Pope, 2004). following chemotherapy tend to be a function of the cancer or the What is the duration of these cognitive impairments? Researchers side effects of chemotherapy, rather than emotional distress. Areas have examined the neuropsychological effect of standard-dose system- of cognition most affected by chemotherapy include: sustained atic chemotherapy in long-term survivors (five years symptom free) of tention, alternating attention, cognitive flexibility, memory loss, and breast cancer and lymphoma (Ahles, Saykin, Furstenberg et al., 2002). information processing speed. Though symptoms may be mild, they Survivors who had been treated with systemic chemotherapy per- are often debilitating and warrant treatment. Recent efforts have been formed significantly poorer on a battery of neuropsychological tests made to identify specific neuropsychological tests that would be most than those treated with local therapy only (radiation and surgery). sensitive in the screening of chemotherapy-induced cognitive impairGroup differences were particularly apparent on measures of verbal ments (Freeman and Broshek, 2002a; 2002b). memory and psychomotor functioning. Ahles et al. also investigated Appropriate assessment, cognitive rehabilitative treatment, and the long-term effects of chemotherapy on cognition in 128 healthy medication management with stimulants are all potentially helpful in breast cancer and lymphoma survivors at an average of 10 years post alleviating these problems. In addition to stimulants, other medicatreatment. Some of the study participants had undergone chemother- tions may be found to improve cognition or serve as neuroprotective apy as part of their treatment, while others had received only radiation agents. Before clinical practice can be refined sufficiently to reduce and/or surgery without chemotherapy. Those who had received che- cognitive side effects, research will be necessary to delineate which motherapy were twice as likely to fall within the impaired range. patients are most at risk for cognitive dysfunction. More empirical BRAIN INJURY PROFESSIONAL

13

research is needed to clarify if hormone ablation therapy for breast and prostate cancers causes neurocognitive symptoms. Research is also needed to investigate the effects of pre-morbid factors, genetics, age, menopause stage, estrogen levels, general cognitive ability, and degree of cerebral reserve, on a person’s ability to resist cognitive decline from treatment. Timely diagnosis and education related to chemotherapy-induced cognitive impairment are critical to reduce psychological distress and mobilize the additional services and supports that may be needed during the recovery process.

Post Script The focus of this article has been to raise awareness of chemotherapy induced cognitive dysfunction in breast cancer. We would be remiss in not addressing critical issues in breast cancer for women (and men) with TBI. Women with TBI are at greater risk for later diagnosis, and subsequent higher mortality and morbidity from breast cancer. Cognitive impairment and lack of exposure to education and training may limit the occurrence or effectiveness of breast self-exam as an early diagnostic tool.

Cognitive impairment also has an effect on the likelihood of accessing mammography.

Legg, Clement and White (2004) analyzed data from 6,053 women, 351 of whom selfreported cognitive impairment. After controlling for sociodemographic, functional and and health-related factors, women with self-reported cognitive impairment were 30% less likely to utilize mammography, and therefore were at increased risk for late-stage cancer diagnosis. It is imperative that practitioners in brain injury rehabilitation settings aggressively address and encourage preventive healthcare measures such as breast self exam and mammography.

Additionally, there is no research published examining the effects of chemotherapy on cognition in breast cancer survivors with pre-existing brain injury. It is reasonable to speculate that individuals with TBI would be at comparable or greater risk for chemotherapy-induced cognitive decline. Provisions for increased support and services may be necessary. Cognitive changes should be carefully monitored and treated aggressively utilizing approaches described earlier in this article.

About the Authors

Austin Errico, Ph.D. is the Director of Adult Services and Director of the Psychology Internship Program at Lakeview NeuroRehabilitation Center, a CARF and JACHO accredited rehabilitation facility in Effingham, New Hampshire.

Dr. Errico also has a private practice in Freeport Maine and has published in the areas of the neuropsychological effects of substance abuse, endocrine changes and traumatic brain injury.

Tina M. Trudel, Ph.D. is Executive Director of Lakeview NeuroRehabilitation Center and VP of Clinical Services for the Lakeview companies.

She chairs the NH Brain & Spinal Cord Injury 14 BRAIN INJURY PROFESSIONAL

Advisory Council, serves on the AACBIS national governing board, is an adjunct Assistant Professor of Psychiatry at Dartmouth Medical School, and has published and presented extensively in the field of brain injury.

Robert Perna, Ph.D. is the clinical director of a CARF accredited brain injury day-treatment program, Westside Neurorehabilitation in Lewiston, Maine. He is board certified in clinical neuropsychology and psychopharmacology and teaches graduate neuroscience.

on memory and cognition? A pilot study. Psycho-Oncology. 13: 61-66, 2004.

References

Meyers CA. Neurocognitive dysfunction in cancer patients.

M.D. Anderson Oncolog. 14 (1): 1-13, 2000.

Ahles, TA. Saykin AJ Furstenberg, CT, et al., Neuropsychologic impact of standard-dose systemic chemotherapy in long-term survivors of breast cancer and lymphoma. Journal of Clinical Oncology. 20 (2):, 485-493, 2002.

Ahles TA. Saykin AJ. Noll WW, et al., The relationship of APOE genotype to neuropsychological performance in long-term cancer survivors treated with standard dose chemotherapy. PsychoOncology. 12; 612-619, 2003 Brezden CB. Phillips K. Abdolell M. et al., Cognitive function in breast cancer patients receiving adjuvant chemotherapy. Journal of Clinical Oncology. 18;14, 2695-2701, 2000.

Cancer Forum. Retrieved April 1, 2004, from www.ucsfbreastcancercenter.org/forum/2002/april minutes.html, 2002, April.

Cole RP. Scialla SJ. Bednarz L. Functional recovery in cancer rehabilitation. Archives of physical medicine and Rehabilitation.

81: 623-627, 2000.

Espy KA. Systemic chemotherapy may cause long-term cognitive deficits. The Lancet Oncology. 3(2), 2002.

Freeman JR. Broshek DK. Assessing Cognitive Dysfunction in Breast Cancer: What are the Tools? Anemia & Quality of Life in Oncology. 5:11-16, 2002a.

Legg JS. Clement DG. White KR. Are women with self-reported cognitive limitation at risk for underutilization of mammography? Journal of Health Care for the Poor and Underserved.

15:688-702, 2004.

Meyers CA. Abbruzzese LJ. Cognitive functioning in cancer patients: effects of previous treatment. Neurology. 42: 434436, 1992.

Meyers CA. Weitzner MA. Valentine AD, et al., Methylphenidate therapy improves cognition, mood, and function of brain tumor patients. Journal of Clinical Oncology. 16 (7): 2522-2527, 1998.

O’Shaughnessy JA. Chemotherapy-induced cognitive dysfunction: a clearer picture. Clinical Breast Cancer. 4: S89-94, 2003.

O’Shaughnessy JA. Vukelja SJ. Holmes FA, et al., Feasibility of quantifying the effects of epoetin alfa therapy on cognitive function in women with breast cancer undergoing adjuvant or neoadjuvant chemotherapy. Clinical Breast Cancer. 5(6): 439-446, 2005.

Parker-Pope T. Memory loss in chemotherapy patients becomes a new area of focus for doctors. Wall Street Journal - Eastern Edition, p. D1, 2004, April 6.

Schagen SB. Van Dam FSAM. Muller M, et al., Cognitive deficits after postoperative adjuvant chemotherapy for breast carcinoma. American Cancer Society. 85(3): 640-650, 1999.

Stuyck KMD. Multidisciplinary team helps with cancer overcome cognitive problems M.D. Anderson Oncolog. 46(11/12): 1-3, 2001

Freeman JR. Broshek DK. Assessing Cognitive Dysfunction in Breast Cancer: What are the Tools Clinical Breast Cancer Supplement. 3(3): S91-S99, 2002b.

Van Dam FSAM. Schagen SB. Muller MJ, et al., Impairment of cognitive function in women receiving adjuvant treatment of high-risk breast cancer: high-dose versus standard-dose chemotherapy. Journal of the National Cancer Institute. 90(3): 210-218, 1998.

Jenkins V. Shilling V. Fallowfield L, et al., Does hormone therapy for the treatment of breast cancer have a detrimental effect

Wefel,JS. Lenzi R. Theriault R, et al., Chemobrain in breast carcinoma? A prologue. Cancer. 101: 466-475, 2004.

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Personalized Success No two brain injuries are alike. That’s why Bancroft NeuroHealth’s brain injury programs offer individualized short-term, long-term or lifelong services. Our neurobehavioral

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Community Re-entry

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continuum of residential and rehabilitation services allows us to design programs to meet

Neurobehavioral Rehabilitation

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each individual’s needs and flexibly adapt to changing needs. Our clinical expertise and compassionate care help those we serve to successfully rebuild their lives.

Louisiana • 800.430.1210 New Jersey • 800.774.5516 www.bancroftneurohealth.org Bancroft’s Brain Injury programs are accredited by CARF: The Rehabilitation Accreditation Commission.

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15

My Life After The Injury: A Woman’s Story

by Marvel Vena My name is Marvel, I am 58 years old and am 24 years post brain surgery. I had a car accident that knocked me unconscious. When the testing was done they discovered an Arterial Vascular Malformation. I had surgery in 1981. It left my left side paralyzed. After rehab I was able to walk again but was left with a left-sided weakness and needed to wear a leg brace and walk with a cane. I have several secondary injuries from falls that over many years caused multiple fractures. I also have some cognitive deficits. Some of the deficits are general, related to me as a person. For example, I have always been the go-to girl in my family, job etc. I still am. It wasn’t always easy to be the responsible one after my surgery. I needed a go-to person. Once I moved in with my soon-to-be-husband, he was my go-to person. Now that we are divorced, my best friend is my go-to person. She gets me and understands everything without my having to tell her. Other deficits influenced my role, that were unique to my being a woman.

Being a mother was hard. I would have to say that as a mother I feel that I was not there for my children for a long time. My son was 15 and my daughter was 13 years old when I had my brain surgery. After the surgery, I was totally self-absorbed in what had happened to me, and to the changes that this brought about. I also had very low levels of physical and emotional energy, and low self esteem. As the sole provider I had to go back to work. So even when I wanted to, I had very little to give to my children. My kids were at a sensitive age, and I didn’t, and couldn’t, get involved in their school activities or in their social life. My son had lived with his father pre-injury, and now I saw even less of him. My 16 BRAIN INJURY PROFESSIONAL

daughter, although technically she lived with me, spent most of her time with her grandmother, my mother, until she could drive.

She then moved in with me again. Due to their age, my condition was never really discussed with them until they were adults, with children of their own. But even as adults my children really don’t want to know what’s wrong with mom. My daughter can see my physical deficits. It’s the emotional and cognitive ones she doesn’t understand. The rest of my family has been more understanding.

And luckily, being a daughter and caregiver to an aging mother has been easier. My sister and brother help me do the things I can’t do. So my difficulties haven’t affected this yet.

Being a partner brought its own challenges. I lived with my second husband for 20 years, 17 years of which we were married.

Before the accident, when I met him, things were at an all time high socially for me. We fell in love and the sex was good. I thought we communicated well on every level. I felt that way for a long time.

After my injury is when the lack of self confidence began to infiltrate my life. I refused to marry him for the longest time because of it. Most of the activities my husband liked were sports oriented. I did try to down-hill ski and was successful until I blew out my right (good) knee I then knew it was too dangerous. It seemed like the only things he liked to do were things that were impossible for me.

There were so many physical things that I was able to do before that I could no longer do due to a lack of strength and coordination. On a day to day basis, I would come home from work totally mentally and physically exhausted. My temper was also a problem for both of us. Fights were often instigated by me and I probably took my

frustration out on him. I also felt bad because I was not able to do all the cleaning chores I would have liked to do. Vacuuming was out of the question or at least very dangerous for me. I couldn’t climb up on anything either to reach items I needed. When we went out, I always thought that people wondered why such a good looking guy was with me. He was so much younger than me too. My self confidence left me like it was sucked out of my body.

Being an employee was also difficult. I couldn’t remember how to do my job, even after I asked to be demoted and retrained. I had to learn to compensate for my cognitive deficits – those I recognized and acknowledged. However, there were others I was unaware of and, or, did not understand. No one ever explained them to me. I thought I was crazy, so it was impossible to tell anyone. I survived in corporate America for 8 more years until my repeated falls and broken bones, primarily during the winter season, forced me to go on disability. I had asked my employer to allow me to work part of the time from home, which was a safer environment for me. I would then only need to commute to the city a couple of times a week. When I went out on disability, it was because my work place would not accommodate my disability. It was before ADA was signed into law. Today, my employer would have had to accommodate my request.

Being a woman with a brain injury is excruciating. A big problem that I feel impacts me as a woman is the way I look when I walk. It prevented me from getting married for 4 years after my injury because I was afraid he would leave me. I had 20 good years with him but in the end he told me he had felt obligated to marry me and wanted a divorce. It’s been a difficult couple of years. Now that I would like to meet some men to have a relationship with, even just as friends, I feel uncomfortable with my body and how it looks from all the physical disabilities I have. I don’t know how to explain my physical disability, which is obvious, or my brain injury, which is not. How much do you tell a new friend about the physical and the cognitive deficits? Is the right time via telephone or e-mail early on? or, do you wait until you meet so you can get the “what’s wrong with you” look? My friends tell me men look at me all the time but I never notice it. This is a difficult problem to overcome. Sex is even scarier.

The thought of being intimate with someone new is beyond where I can go now. I think sex is particularly scary for me because I was very sexually extroverted when I was single, prior to my surgery. I guess you could say I never had a problem finding men to be intimate with.

Now with someone new it would be difficult to explain, and for them to understand, my physical and cognitive limitations.

I was always very particular about my appearance. I remember in rehab, back in 1981, in a small community hospital, I asked my physical therapist how I was going to curl my hair with one good arm. Her response was “I don’t know, I’ve never been asked that question before!” Most of her patients with problems like mine were older, probably injured from a stroke. She had never had as a patient a young, single mother that needed to go back to work. All of this might seem very vain and I know that I am. But it seems to me that these things should be taken into consideration when putting together a treatment plan. What do people really like to do? Or need to re-learn? If someone had only said to me during rehab: “let’s go learn how to do your hair with one hand or put on pantyhose, even learn to apply makeup!” I was single and had to go back to work.

These things worried me. They were important to me.

However, being a grandma is wonderful. My grandchildren are the loves of my life. I love them all, but the babies are especially sweet.

I see them often, and they brighten my days. For to them I am perfect. I just wish that I could hold them when they’re over 20 lbs. I can’t diaper them, or lift them up, or put them into bed without assistance. So I worry about being alone or in charge of the babies because of my physical limitations. The older ones ask questions about my brace etc., and when I explain it to them they are very accepting of it.

If only all people could be as open minded as children, people with disabilities would not feel so self conscious.

Taking everything into consideration, if someone asked me today if I could undo my disability, I would tell them no. I have learned so much about life and what’s important. I have met the best friends a person could ever ask for. I have been involved in some of the most interesting organizations and causes. I have more than anyone could ever want. It has all been because of my disability. I’m one of the lucky ones!

About the Author

Marvel Vena is 24 years post brain injury. She is the past President of the Brain Injury Association of Illinois. She was a founding member of the Governor’s Brain and Spinal Cord Injury Advisory Council for the State of Illinois. She has been involved in several brain injury grants both locally and nationally. She has done public speaking on both a local and National level. She currently is the facilitator for a one of a kind family information group in the Neuro-Surgical family waiting room at Rush University Medical center in Chicago, Illinois.

She is also on the Rehab Advisory Council and ADA Advisory Council at Rush. She is a caregiver for her mother who has Parkinson’s disease. They reside in a Chicago suburb.

After an injury claiming your former sense of self is essential. Therefore, for women with brain injury, and for their respective caregivers (physicians, therapists and family members) still struggling to find their way, I offer the following recommendations.

• •

•

It would be greatly appreciated if occupational therapists’ could come up with some tips for dealing with makeup, hairstyles hair styling tools.

Shoes and a brace don’t need to look ugly and orthopedic: You don’t need to buy two different pairs of shoes, one for your foot and one for the braced-foot. However, you do need to buy a wider width a stretching shoe tree, and you need to take the inner sole out of the shoe you wear the brace on. Naturalizer is a good place to buy shoes. They give good support, they are attractive and you can usually find a shoe you like. I usually buy several pairs if I find one that I really like because you may not find it again.

For canes there is a great web site www.canesgalore.com. They offer many styles and types even hand painted walkers. They are not real expensive from $45.00 to $100.00. They will send catalogs for free and tell you how to measure the length.

Women, especially those with a brain injury, may have to fight to be heard by the assorted professionals who care for them. Consequently, I would like the medical establishment to consider the following points.

•

•

•

How many physicians’ offices pre screen for special needs while setting up appointments? Needs that might arise are mobility issues, the need for a wheel chair, or interpreters for people that don’t speak English, and/or sign language interpreters for people that have hearing impairments. Offices that wait until the patient arrives before establishing their special needs waste the patient’s time and make the medical professionals way behind schedule.

Just because a woman has had a brain injury does not mean her body is no longer that of a female’s. Accessibility to OB/GYN services for annual pap smears and mammograms should be facilitated for all women with TBI. How many hospitals or private practices offer accessible tables for pap smears or accessible mammography equipment? A woman in a wheel chair is not a 15 minute mammogram, it could take an hour thus throwing off the schedule, while annoying those in the waiting room.

Finally, like our non-injured counterparts, we are familiar with our bodies and know when something is wrong. The physician who respects his or her patients’ input is more likely to reach an accurate diagnosis.

This will lead to a more timely treatment intervention.

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Women and Sexuality Post-TBI

by Tina M. Trudel, PhD INTRODUCTION

Human sexuality is a highly integrated, complex activity involving physical, cognitive, behavioral and psychosocial elements. It is also an arena wherein variables of personal sensitivity, tradition, religion, family dynamics, coming of age and more recently, politics, are at play. While sexuality has received attention in the traumatic brain injury (TBI) literature, much of the focus has been on men’s sexual functioning. Specifically, problems with sexual disinhibition or sexuality within the context of family life and reproduction have been addressed. Readers are referred to Elliott and Biever (1996) and Zasler and Kreutzer (1991) for comprehensive general reviews of sexuality post-TBI. However, women’s sexuality remains an issue where rehabilitation professionals often choose to tread lightly. Those very variables that inhibit discussion about male sexuality are augmented when addressing women’s needs. Thus discussion is often limited to sexually transmitted diseases and reproduction/contraception. This article addresses women’s sexuality, dating, orientation, activities and experience of satisfaction post-TBI, from the perspective that, “pleasure is an affirmation of life” (Tepper, 2000 p.288), and that rehabilitation should be a life-affirming venture.

SEXUALITY RESEARCH POST-TBI

TBI frequently involves damage to the fontal system, limbic structures and temporal lobes, all of which mediate the complex processes associated with the expression of sexuality. These include endocrine functions, sexual responsivity, motor control and sensation as well as the psychosocial. A mixed gender study demonstrated participants with frontal lobe and right hemisphere lesions reported less sexual dissatisfaction in comparison to participants with non-frontal lesions (Sandel et al., 1996).

Additionally, depression, anxiety, cognitive impairment, amotivational states and behavioral dyscontrol are well documented sequelae of TBI that impact sexual functioning for men and women alike.

While the focus of post-TBI sexuality research has predominantly addressed the male population and the phenomena of disinhibition, the following studies noted other difficulties and included sizable samples of women (Hibbard et al., 2000; Ponsford, 2003; Sandel et al., 1996): 1. Difficulties influencing sexual energy, desire and drive.

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2.

3.

4.

5.

Reduction in sensation and orgasm.

Problems with positioning, movement and pain.

Changed body image, self-confidence and mood Decreased ability to sexually satisfy a partner

Sexual disinhibition and hypersexuality may also occur post-TBI, particularly in more severe injuries. Such symptoms can be very disabling and limit successful sexual intimacy. While detailed treatment approaches are found in the behavioral and brain injury rehabilitation literature, it should be noted that hypersexuality does not appear as a frequently reported problem in larger post-TBI research cohorts and community survey samples.

Findings from general outcome studies demonstrate that women with TBI experience changes in sexuality and greater relationship difficulties. With TBI occurring primarily in the 15-25 year old age group, such changes may have a dramatic and long-term impact on these young women, particularly with the common lack of attention paid to sexuality in TBI rehabilitation, and the perceived desexualization of women with disabilities that may occur. Hibbard et al.’s (2000) study included 129 women post-TBI and identified gender-specific differences. Women with TBI experienced more frequent difficulties with sexual arousal, pain with sex, difficulties with masturbation and decreased vaginal lubrication. While the women in this sample were as sexually involved as their non-disabled female counterparts an age related decrease in sexual functioning was noted. The types of sexual difficulties documented in this large sample of women with TBI align with the types of sexual dysfunction disorders described in the DSMIV (problems with arousal, reduced desire and pain during sexual activities), and are noted to occur at a higher rate than those reported for non-disabled women. Consistent with the general population, women with TBI reported a higher rate of sexual difficulty than men with TBI. Further, women with milder TBI reported more sexual dysfunction than those with more severe TBI (as with men post-TBI).

This is consistent with the growing literature demonstrating heightened awareness of problems among persons with mild TBI. The most sensitive predictors of sexual difficulties in women were endocrine disorder and depression combined. An area often neglect-

ed, but clinically prevalent is vaginal dryness. Pain is another culprit adversely impacting women’s sexual functioning post-TBI. Chronic pain is among the most frequently reported long term complaints of individuals with TBI (Trudel et al., in press). Studies of women with chronic pain (no TBI) indicate that pain increases fatigue, reduces sexual interest and contact, diminishes body image, reduces self-esteem and creates the need for alternative methods and positions for sexual expression. For those not in relationships, pain also causes difficulty in forming new relationships (Schlesinger, 1996). Finally, many medications commonly prescribed post-TBI may also interfere with women’s sexual experience (see Table 1).

DATING, DISABILITY AND RELATIONSHIPS

Little has been published regarding women and dating post-TBI. The clinician can garner ideas from the literature on social skill rehabilitation, and some of the findings on dating among women with disabilities other than TBI. There is a stereotype of women with disabilities as asexual. When attention is paid, it is often a clinical focus on the mechanics of sex. And, not surprisingly, the literature notes lower marriage rates for women with disabilities, and difficulty finding suitable partners for intimacy to occur. Women with disabilities from birth or childhood are noted to be older at the age of first date and first serious relationship, although they are just as interested as any other teenagers.

Women with disabilities reported their parents as discouraging intimate relationships and viewing them as less suitable for marriage. Reduced opportunities for dating are also discussed and related to multiple factors: visible disability deterred dating; potential partners mistakenly assumed women with certain disabilities were disinterested or incapable of sex; the social pressure against dating a woman with disability; women with disabilities displayed low self-esteem and self-defeating behaviors; limited mobility or access to transportation impeded dates; and cognitive or communication problems made the complexities of dating extremely difficult (Howland and Rintala, 2001).

Further barriers to dating and developing sexually intimate relationships involve living with parents or in a program where such activities are not supported or frankly prevented. Women requiring personal care attendant services must cope with the attitude and approach of this third party when developing relationship options. Many sites frequented for dates and socialization remain inaccessible, and few areas beyond urban centers have well developed transportation systems for individuals with physical disabilities. This difficulty is exacerbated by the lack of support and materials for women who also experience cognitive or memory challenges. Lack of preparation, training, counseling and normalization in managing sexual implications of assistive devices, medical equipment and bowel or bladder issues also cause many women to avoid dating and potential intimacy altogether. Misunderstandings may occur when disabilities are ‘invisible’ as in TBI, and there Table 1

are ample anecdotal accounts of women ‘going along with things’ that were physically or psychologically hurtful, or at best not pleasurable.

Studies on psychological aspects of dating and intimate relationship formation by women with disabilities raise some red flags directly applicable to women with TBI. They also suggest proactive interventions that can be provided by rehabilitation professionals.

Observed major obstacles to successful dating and sexual intimacy involve fear of rejection, issues with vulnerability, trust and control, and excessively trying to please a partner to the degree of negating one’s own needs. Women with disabilities such as TBI may be at even further risk of tolerating abusive relationships for the aforementioned psychological reasons and the complex challenges of leaving (Howland and Rintala, 2001). A rare but present risk in dating is that of involvement with disability fetishists who may exploit women with disabilities for their satisfaction. Such relationships are typically extremely damaging to the woman involved who may not be aware of the other party’s ulterior motives until it is too late.

LESBIAN AND BISEXUAL WOMEN

Lesbian and bisexual women face unique challenges that are often mismanaged or ignored in rehabilitation. Mapou (2000) coined the term “benign neglect” to describe the staff discomfort or inexperience in treating lesbian and gay patients. Two contributing factors are heterosexism (an ideological system that denies, denigrates and stigmatizes any non-heterosexual form of behavior or lifestyle), and homophobia (explicitly negative or hostile attitude toward non-heterosexual people). Very little has been published to help staff, develop and become sensitized to stereotypes about lesbian and bisexual women with TBI. Sexual minorities and sexual subcultures are often superficially addresed in staff cultural awareness/diversity training.

This despite the fact that rates of homosexuality and bisexuality are estimated at 2-15% of the population - depending on the definition used (O’Dell and Riggs, 2001).

It appears that by and large, lesbian and bisexual women have many of the same post-TBI sexuality concerns as their heterosexual counterparts. However, issues of dating and community reintegration may be more difficult. Data suggests a higher risk of substance abuse, particularly among younger lesbian and bisexual women, and is another source of potential complication.

RECOMMENDATIONS FOR CLINICIANS: TREATMENT AND SEXUAL ENHANCEMENT

Rehabilitation professionals are only as effective as their knowledge base and willingness to learn, be that in sexuality or any other topic.

Approaching sexuality as any other critical life domain is an important part of the rehabilitation process. There are instances wherein a woman with TBI may feel more comfortable discussing sexual mat-

Effects of Certain Medication Classes on Women’s Sexual Functioning

Drug Category

Examples

Benefits

Effects on Women’s Sexual Functioning

Antidepressants

Prozac, Elavil, Norpramin

Control/improve mood

Delays orgasm

Antispasmodics

Probanthine, Baclofen

Reduce/control spasms

None identified

Antihypertensives

Inderol, Beta blockers

Control blood pressure

Decreases sexual drive

Antiseizure

Dilantin, Tegretol, Depakote

Reduce/control seizures

Decreases sexual drive, increases fatigue, disinterest

Antihistamine

Actifed, Atarax, Claritin

Control allergy symptoms

Older medications decrease sexual drive and orgasmic response, increase fatigue. New medications - no effects identified

Anti-inflammatory

Advil, Naprosyn

Control inflammation and reduce pain

Increases sexual drive, decreases menstrual pain, increases sexual response

Antibiotics

Cipro, Penicillin

Control infection

May increase vaginal itching and yeast infections

Antiemetics

Reglan, Compazine

Control nausea

Decreases sexual drive, decreases orgasmic response

Oral Contraceptives

“The Pill”

Prevents conception

Various types may either increase or decrease sexual drive

Androgen Anabolic Steroids

Winstrol, Anadrol

Minimizes wasting syndromes

Increases sexual drive, absence of menstrual period, clitoral enlargement

Hormone replacement therapy

Estratest; Premarin

Adjust hormone levels following menopause/ hysterectomy

Increases sexual drive; prevents vaginal atrophy

BRAIN INJURY PROFESSIONAL

19

ters with a female treatment provider. However, the greatest means of ensuring approachability and comfort regarding sexuality in the treatment setting is by providers developing their own knowledge, skills and comfort level, and making such evident when taking a history, conducting physical examinations (as applicable) and providing information and interventions.

For lesbian and bi-sexual women, to ensure that these areas are fully addressed, the rehabilitation provider must openly present lesbian and bisexual orientation as part of the options when documenting sexual history. Informed inquiry should then be made into cultural, relationship and community reintegration. Preferences regarding disclosure of sexual identity, presence, role and rights of a significant other, as well as potential conflict with the family of origin and fear of discrimination from employers should also be explored. Specific information about pre- and post-TBI libido, intimacy, sexual activity and current physical changes are also part of the sexual history interview clinicians may also be unfamiliar with sex acts or positions between women, as well as devices that may be utilized during sex acts or to prevent sexually transmitted diseases, such as dental dams. Unfamiliarity may lead to avoidance of discussion in treatment, leaving gay and lesbian women at greater risk, and having to struggle with sexuality issues raised by paresis, bowel and bladder changes, spasticity and other post-TBI changes.

Recommended websites with many informative links on women’s sexuality that address lesbian and bisexual women include www.youngwomenshealth.org and www.ourbodiesourselves.org.

Irrespective of orientation, treatments of sexuality-associated issues generally follow a similar pattern. Following a physical exam, the recording of the woman’s sexual history and the identification needs, treatment is usually conducted in a small group, which can be comprised of couples and, or, individual sessions. Treatment groups for sexuality issues following TBI often focus on education. Topics commonly addressed include sexually transmitted diseases, contraception and condom use, sexual risk, abuse, neglect and reporting, and basics of social skills and dating. Interventions may dovetail with other rehabilitation activities and further cover application of relaxation strategies, communication skill development, language pragmatics, problem solving, self-monitoring and behavioral rehearsal/social script models to the dating and sexual intimacy setting. Specific sexual problems are typically addressed in individual therapy, and common sex therapy treatment strategies are often applicable. There are also anecdotal reports of massage and bodywork-type therapies as effective for some individuals in restoring a healthier body image and integration of their physical self. Individual psychotherapy may be required for unresolved/resurfacing issues of sexual abuse or trauma.

Sexual issues related to physical impairment, bowel and bladder management, medication effects and medical devices are frequently addressed earlier in rehabilitation. However, as recovery status becomes clearer, unresolved medical, physical or cognitive issues may necessitate reconsideration of contraception methods. Clinicians are encouraged to become familiar with the variety of products available, and to educate women regarding the risks of using substances that may cause condom failure or infection. Women with TBI rarely have the opportunity to address issues of sexual self-knowledge, masturbation, sexual pleasure and sexual positioning. Many women of all ages are unaware of female sexual anatomy and sexual response cycle. This lack of understanding may limit their expectations and preclude effective communication of problems or concerns to healthcare professionals.

Women with TBI may experience physical changes that necessitate adjustments. Such adjustments may include relearning how to give and receive sexual pleasure (sensate focus training) and assuming different positions during intercourse. Further problems may exist that physically limit satisfactory masturbation, necessitating adaptive equipment and collaboration with occupational therapists and rehabilitation technologists. Finally, women may require help negotiating with their partners to affect satisfactory sexual relations. Such multi-factorial interventions are more thoroughly outlined in the spinal cord injury, chronic illness 20 BRAIN INJURY PROFESSIONAL

and cerebral palsy literature, with informative links available through the Sexual Health Network www.sexualhealth.com.

Other women with TBI may have difficulty with fantasy or generating sexual ideation that often maintains sexual arousal and accompanies orgasm. Clinicians can provide a non-judgmental forum to help women understand this phenomenon and identify creative alternatives and safe sources of materials that facilitate arousal. Also, changes in sensation requiring different or more intensive stimulation may warrant exploration of sexual aids, and clinicians can serve to identify resources, dispel myths and minimize stigma that may be associated with such products. Clinicians and women with TBI can find detailed information regarding sexual aid products through sites such as www.womynsware.com that provide detailed product descriptions and safety information, as well as www.mypleasure.com, which includes articles by rehabilitation psychologist Linda Mona, PhD, a sex researcher and advocate for individuals with disability.

While discussion of couple and family issues is beyond the scope of this article and reviewed in detail elsewhere (Zasler and Kreutzer, 1991), such education and counseling are a critical part of the treatment of sexual issues in most instances. Information, adaptation and accommodation regarding post-TBI sexuality are important to maintaining and improving the relationship, and are often neglected in light of the myriad issues that can emerge after brain injury. For many, shared sexual pleasure reaffirms, restores and rejuvenates both the self and the partnership in which intimacy occurs. For women with TBI, sexual health and pleasure is a vital, although often unspoken, rehabilitation goal.

About the Author

Tina M. Trudel, PhD is Executive Director of Lakeview NeuroRehabilitation Center and VP of Clinical Services for the Lakeview companies. She chairs the NH Brain & Spinal Cord Injury Advisory Council, is a post-doctoral supervisor in neuropsychology – adjunct Asst. Professor of Psychiatry at Dartmouth Medical School, adjunct faculty for the University System of NH and has published and presented extensively. She has worked in brain injury rehabilitation since 1985, is a Clinical Examiner and governing board member of AACBIS, as well as chair of the ACRM Long Term Issues Task Force and study of aging with TBI. Dr. Trudel maintains a private practice serving individuals with TBI, disabilities and chronic illness, through evaluation, treatment and expert services.

REFERENCES

Elliott M.L. Biever L.S, Head injury and sexual dysfunction. Brain Injury, 10(10):703-717, 1996.

Hibbard MR. Gordon WA. Flanagan S. et al., Sexual dysfunction after traumatic brain injury.

Neurorehabilitation, 15:107-120, 2000.

Howland CA. Rintala DH, Bating behaviors of women with physical disabilities. Sexuality and Disability, 19(1):41-70, 2001.

Mapou R, Traumatic brain injury rehabilitation with gay and lesbian individuals. Journal of Head Trauma Rehabilitation, 5:67-72, 1990.

O’Dell MW. Riggs RV, Traumatic brain injury in gay and lesbian persons: Practical and theoretical considerations. Brain Injury Source, Summer, 2001.

Ponsford J, Sexual changes associated with traumatic brain injury. Neuropsychological Rehabilitation, 13:275-289, 2003.

Sandel ME. Williams KS. Dellapietra L. Derogatis LR, Sexual functioning following traumatic brain injury. Brain Injury, 10(10):719-728, 1996.

Schlesinger L, Chronic pain, intimacy and sexuality: A qualitative study of women who live with pain. Journal of Sex Research, 33(3):249-256, 1996.

Tepper M, Sexuality and disability: The missing discourse of pleasure. Sexuality and Disability, 18(4):283-290, 2000.

Trudel TM. Felicetti T. Mozzoni M, The graying of brain injury: Overview. Brain Injury Professional, 2005 (in press).

Zasler ND. Kreutzer JS: Family and sexuality after traumatic brain injury. In: Head Injury: A Family Matter. T Kay & J Williams (Eds.) Brookes Publishing, Baltimore, MD. Pages 253-270,1991.

ACKNOWLEDGEMENTS

The author wishes to thank Kimberley Whitesell, MD and Deborah Nolin, RPh for review of pharmacological information.

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What does menopause have to do with traumatic brain injury?

The Case for Progesterone

by Donald G. Stein, Ph.D. ABSTRACT Recent clinical trials in hormone replacement therapy for women approaching or past menopause have been disappointing. Most women who have been taking conjugated equine estrogens combined with synthetic progestins have been encouraged to stop these supplements because of increased health risks. The results of the clinical trials may be accurate about the risks associated with the synthetic compounds and combinations, but the data do not reflect what might have been the case if 17b-estradiol had been tested with natural progesterone instead of synthetic medroxyprogesterone acetate. In almost all work on HT, estrogens have been the primary focus despite the fact that progesterone has important properties that can enhance the repair of neurodegenerative and traumatic injuries to the central nervous system.

In addition to discussing recent findings about the neurotrophic and neuroprotective properties of progesterone, this paper highlights why it is important for researchers in TBI to be very careful about the selection of agents for testing in clinical trials. Since both menopause and TBI often result in changes in mood, affect, and cognitive and sensory functions, and since progesterone can affect these functions in TBI and menopause, the case for more detailed analysis of this hormone’s actions in both conditions is of academic and clinical importance.

The recent discontinuation of hormone therapy (HT) clinical trials raises many questions, one of which is why these trials failed.

The HT trials, started in the mid-1990s, had multiple objectives: to examine whether estrogen alone or estrogen combined with the synthetic progestin medroxyprogesterone acetate (MPA) would (a) reduce the incidence of dementias and cognitive impairments in postmenopausal women; (b) reduce the incidence of stroke, deep vein thrombosis, and heart disease; (c) decrease hip fractures; and/or (d) affect the risk of developing certain kinds of cancers (e.g., uterine, endometrial, colorectal, breast). Tens of thousands of women were enrolled in the trials at a cost of many millions of dollars to the National Institutes of Health and the pharmaceutical industry. In 2004 the trials were terminated because the results showed that the treatments did not reduce the incidence of stroke or dementia; indeed, women taking HT had more strokes than those taking placebos, and there were no substantive reductions in the incidence or symptoms of dementia or Alzheimer’s disease. The initial report (Rossouw et al., 2002) concluded that “Overall health risks exceeded benefits from the use of combined estrogen plus progesterone in healthy, postmenopausal women … and the regimen should not be initiated or continued for primary prevention of coronary heart disease ...” (p. 321). Briefings issued on behalf of the Women’s Health Initiative (WHI) reported that HT was also “ineffective in protecting against deep vein thrombosis or cognitive impairments, memory problems and dementia” (p. 321).

Subsequently, in a review of clinical trials in stroke, Brass (2004) re-

This is a modified version of a paper to be published in the Proceedings of the New York Academy of Sciences, “The Future of Estrogen and Hormone Therapy in Postmenopausal Women: What Basic Science and Clinical Studies Teach Us” ed. M. Singh et al.

22 BRAIN INJURY PROFESSIONAL

ported that three separate trials failed to find any benefits of estrogen alone or combination with synthetic progestins in preventing the first occurrence of a stroke or in reducing the risk of a recurrent stroke.

The complex clinical trials were not only disappointing but tragically wasteful because, despite the tremendous costs of this project, the account of what the failure means is at best incomplete and may not even be particularly accurate about the roles of the specific hormones, progesterone and estrogen. The whole issue of whether HR is effective or even risky for various groups of women has been only partially addressed, because the WHI study tested only women who were receiving conjugated equine estrogens, either alone or combined with MPA, rather than the natural forms of these hormones.

There is growing evidence that the receptor and molecular actions of these agents could be quite different, so outcomes measuring mood, affect, cognition, and sensory disorders might have been different had the natural forms of the hormones been used instead of the more commercially available and more expensive synthetics.

Why is a discussion of HT of interest in the context of TBI? Part of this question might be answered by examining what role natural progesterone, given by itself, might have played in the outcome of the clinical trials, and whether the combined treatments with estrogen might actually have antagonized some of the neuroactive and neuroprotective effects of endogenous progesterone, effects which could be similar to those seen in treating brain damage. Clinical trials using progesterone for the treatment of TBI are now in progress. If a short course of treatment with this neurosteroid is shown to improve mood and cognitive functions in the brain-damaged patients, it might be worthwhile to re-examine its role in mediating affective and cognitive functions in menopausal women. That is, the failure of the HT trials points us toward a new perspective on the problem of choosing agents for investigation of potential TBI treatments, and recent research on neurosteroids in the treatment of TBI and other forms of CNS damage has implications for HT and the problems associated with menopause.

There is considerable research on estrogen and progesterone showing that these steroids can both influence brain morphology and plasticity across the developmental spectrum (McEwen and Woolley, 1994; Li et al., 2004) and dramatically affect the repair and regeneration of the damaged central nervous system (CNS) (Stein, 2001; Stein and Hoffman, 2003). What is learned about the role of the hormones in CNS plasticity and repair may also be relevant to the metabolic and structural changes in the aging brain and the effects of these changes on mood and cognitive performance associated with menopause.

Because my own field is in recovery from brain damage, I will briefly review the growing literature demonstrating that natural progesterone may be a potent neuroprotective agent, especially in the treatment of TBI, stroke and certain neurodegenerative disorders. I contend that progesterone may be a better alternative to estrogen in the treatment of CNS injuries, but I also emphasize that a definitive claim must be based on more research. Most of my research over the last 15 years has focused on the role of progesterone in the experimental treatment of TBI, and more recently in stroke. In our models of brain injury, treatments have always been given after damage has occurred, whereas in HT, the hormones have been administered as prophylactic agents to otherwise healthy women in the hope of reducing the risk of later disease. Chronic or prophylactic use of the hormones is certainly very different from their use in TBI, where treatments are given for just a few days beginning as soon as possible after the injury.

One important question to address is whether progesterone and its metabolites would compare favorably to estrogen in the reduction of risk for stroke and dementia for both males and females. In fact, this may turn out to be the major advantage of progesterone— which, unlike estrogen, can be given to both males and females without affecting gender and sexual functions.* Given the concerns over chronic estrogen administration, a second question is whether what we learn about the role of progestins in treating brain injury after it occurs is applicable to hormone replacement given prophy-

lactically to essentially healthy pre-and post-menopausal women.

There are some interesting if unfortunate parallels between HT and TBI treatment research. In both fields, recent large-scale clinical trials had to be terminated because of negative outcomes. In the treatment of TBI, for the past 30 years, the most widely used early treatment to stop brain swelling and inflammation was relatively high doses of the glucocorticosteroid hormone methylprednisolone (Prednisone), but although this potent hormone was commonly used it was never fully tested in a randomized clinical trial until recently. Then, under the auspices of the British Medical Research Council, a worldwide clinical trial was planned to test over 20,000 patients with brain injury eligible for steroid treatment—half would be provided with the hormone and half would be given state-of-the art treatment, but no Prednisone. After 10,000 subjects had been examined it was found that at two weeks post-injury, the patients on the steroid had a substantially increased rate of death compared to controls. The trials were abruptly terminated (Sauerland and Maegele, 2004). This now leaves the victims of TBI, like the HT candidate population, without any acute-stage neuroprotective treatments to prevent the secondary loss of vulnerable brain cells. Enter progesterone (and perhaps estrogen?).

Until now, about 81 percent of papers using animal models of stroke focused exclusively on the neuroprotective effects of estrogen without any direct comparisons to the progestins (Behl and Holsboer, 1999; Roof and Hall, 2000; McCullough and Hurn, 2003; Melcangi and Panzica, 2003; Yang et al., 2003; Segarra and Lee, 2004). Despite the problems with the WHI clinical trial outcomes it is not my intention to dispute the potential beneficial effects of unopposed estrogen treatments in animal models of stroke and other forms of neural injury such as retinal degeneration or spinal cord damage. I simply wish to propose here that the study of progesterone and its metabolites as potential therapeutic agents in their own right deserves more consideration—if for no other reason than definitively to rule out any beneficial role they may play in HT or in repair of neural injuries. The issues can be formulated as two questions: (1) is there evidence that progesterone or its metabolites can enhance cognitive performance in intact subjects? and (2) do progesterone or its metabolites enhance recovery after injury to the brain?

DOES PROGESTERONE INFLUENCE MOOD, COGNITION AND MEMORY IN NORMAL SUBJECTS? The literature surrounding this question is not very large and not completely consistent, but in general it seems that both circulating levels and progesterone supplementation may be beneficial rather than detrimental in animals and humans. In one study, Hampson and Kimura (1988) tested women (20-39 y.o.) on a battery of psychological tests during the early stages of their menstrual cycle (days 3-5) and then 7 days prior to menstrual onset. They found that on the tasks where women typically do better than men (mostly manual skills), performance was better during the midluteal phase, when progesterone levels are higher. Interestingly, on a perceptual task in which men typically excel, women were worse during the midluteal phase than they were during the menstrual phase of the cycle. This could be interpreted to mean that circulating levels of hormone may be beneficial to some aspects of performance, while not so good for other aspects. The Hampson and Kimura findings were disputed in a later study by Epting and Overman (1998), who examined both women and men on a similar variety of cognitive and motor tasks but found no evidence that menstrual cycle affected performance.** As mentioned, findings in this area continue to be inconsistent and controversial (much like the work on estrogen). Recently, Solis-Ortiz, Guevara and Corsi-Cabrera (2004) examined nine healthy females with regular menstrual cycles on a cognitive test designed specifically to measure “executive functions” thought to be mediated by the prefrontal cortex (the Wisconsin Card Sorting Task, which measures abstract reasoning, problem solving and working memory) while simultaneously recording EEG activity during ovulation, early luteal, late luteal and menstrual BRAIN INJURY PROFESSIONAL

23

phases of the cycle. Performance on the WCST was best during the early luteal phase when progesterone levels were highest, and there were no changes in EEG reactivity (compared to baseline at rest) during this phase. The changes seen in the forms of EEG activity were associated with lower levels of anxiety possibly caused by the higher levels of progesterone. The authors conclude that “high physiological progesterone levels as in early luteal phase favor performance of tasks demanding internal attention and planning” (p. 1054).

However, some cognitive problems that have been attributed to progesterone could be due to the fact that the hormone and its metabolites bind to GABAA receptors and can produce temporary sedativelike effects, which may be influencing performance when subjective reports of fatigue and somnolence are strong. Women taking synthetic progesterone in combination with conjugated equine estrogens often report that they feel sleepy, groggy or irritable shortly after taking progesterone, but this could be due to the dose (amount, hormones taken together or separately with a delay between estrogen and progesterone, and type of progestin—natural or synthetic). Several recent studies of progesterone’s effects on sedation and motivation (de Wit et al., 2001; Soderpalm et al., 2004) found that single, relatively high, doses (100200mg, by intramuscular injection) given to small samples of men and pre-and post-menopausal women did lead to a mild increase in feelings of sedation and fatigue which was more prominent in the men, but there were no detrimental effects on memory or long-lasting effects on psychomotor performance. Even if mild sedative effects were obtained with doses of progesterone much higher than circulating levels in the luteal phase of the cycle, the hormone could be taken at night, before bedtime, when it might even improve sleep. In any case the subjective feelings of fatigue and mild sedation following progesterone administration would seem to present less risk than some of the negative effects attributed to chronic estrogen administration. From my reading of this literature, small sample sizes and difficulties in defining the phase of the cycle, combined with the considerable variability in testing human subjects, have made interpretation of the usefulness of progesterone more complex than in laboratory animal studies.

In animals, one way to examine the role of progesterone (and estrogen) in learning is to study females across the estrous cycle (or who have been ovariectomized) and determine whether any changes in performance correlate with metabolic and/or structural changes in the brain.*** About eight years ago, Warren and Juraska (1997) examined adult male and female rats in a spatial learning task considered to be sensitive to hippocampal ‘function.’ The females were subdivided into three groups according to their phase of estrus (proestrus, estrus and diestrus). The investigators found that performance of the females varied according to both the specific demands of the task and where they were in the estrous cycle, “with females in the estrus phase, when estrogen is low, outperforming those in the proestrus phase on place learning” (p. 263). In other words, the females appeared to do better when they were lower in estrogen, despite the fact that estrogen was reported to enhance synaptic density thought to be beneficial in complex spatial learning. The authors conclude: “Although inconsistent with traditional views of the relationship between synapse density, LTP and spatial memory, they [their findings] are consistent with previous reports that spatial memory is better in females when estrogen is low” (p. 265).

As with the human literature, the data need to be interpreted cautiously because of inconsistent results. For instance, Chesler and Juraska (2000) also reported that when estrogen or progesterone were given separately to ovariectomized rats, there were no impairments relative to age-matched controls on a spatial learning task thought to be mediated by hippocampal activity. However, when the two hormones were given together there was a deficit in the acquisition of place learning strategy. Here the combination of higher steroid levels was detrimental. The authors also suggest that their results have implications for other hormone replacement studies using chronic doses which do not mimic the transient fluctuations typical of the natural release of the hormones, or have withdrawal effects, both of 24 BRAIN INJURY PROFESSIONAL

which could modify behavioral outcomes (this could also be an important factor in the behavioral outcome measures in the human HT trials). To complicate the issue even further, the Juraska group recently showed that the effects of the estrous cycle on spatial learning can be dependent on the temperature of the water used in the Morris water maze (Rubinow et al., 2004) Proestrous rats performed better when the water was relatively warm, while the rats in estrus performed better in cold water. These effects may well have been mediated by the rats’ response to a stressful situation (with cold water taken to be more stressful than warm), but it also emphasizes how results could vary between labs and how the differences in ‘task variables’ could affect the interpretation of findings—and illustrate why, in the human studies, clinical trial outcomes can be so variable and require such large numbers of subjects before any substantive conclusions can be drawn.

Galea et al. (2000) also used rats to investigate the effects of pregnancy on spatial learning performance and volume of the hippocampus. In general the pregnant females showed much better performance in two spatial learning tasks (involving acquisition and working memory in the Morris water maze) than their non-pregnant counterparts, especially in weeks one and two of gestation, when progesterone levels were at their highest. The animals were worse during the third trimester when estradiol was highest. The authors took their results to mean that high levels of estrogen can inhibit spatial learning and memory and that progesterone may be beneficial to the process. They state that the results of their study “point to a potential facilitatory role of progesterone on performance” (p.

93). They hypothesize that the decrease in spatial learning ability in the third trimester keeps the rats closer to the nest at the time when they need to be concerned with building a nest, preparing for parturition and avoiding predators. Hippocampal volumes were not affected by pregnancy compared to non-pregnant controls.

About a decade ago, a Mexican group (Diaz-Veliz et al., 1994) reported that females in estrus were impaired on the acquisition of a conditioned avoidance response. This task requires animals to learn to inhibit their activity upon hearing a tone in order to avoid foot shock, and can be considered stressful. Progesterone administration enhanced learning of the task when given to rats in estrus, but not at diestrus, suggesting an interaction between the two hormones in mediating this response to a stress-learning situation. Gibbs (1996) has also shown that, relative to age-matched non-treated animals, long-term treatment combining estrogen and progesterone will enhance spatial memory learning in aged, ovariectomized rats. Animals given estrogen alone did better on the learning task than the placebo group, but were not as good as rats given both progesterone and estrogen therapy; this latter group outperformed all others in the study. If treatments were started within three months of the ovariectomies, the performance outcomes were better than if the hormone treatments began ten months after surgery. Gibbs argues that the hormones enhance learning and memory by increasing levels of cholinergic neurotransmitters in the hippocampus, frontal cortex and nucleus basalis magnucellularis—parts of the brain which contain progesterone receptors and which are strongly implicated in mediating learning and memory. Thus the improved performance in the aged rats may be due not only to the anxiolytic, GABAergic, calming effects of long-term exposure to progesterone, but also to its effects on cholinergic (activational) mechanisms.

A recent report by Bimonte-Nelson et al. (2004) suggests that the role of progesterone in aged female rats needs to be clarified even further. This group had previously reported that ovariectomy in aged rats improved performance in a spatial learning task, which is the opposite of what is found when young animals are subjected to this procedure. They point out that in old females progesterone levels remain high relative to estrogen (pseudopregnant estropause), so removals of the ovaries reduce the levels and lead to better performance in the old rats. In this study progesterone supplementation had a negative effect on cognition and working memory. It is hard

to reconcile these diverse findings. Dose, timing of administration (early or later after ovariectomy), hormonal and metabolic status of the brain at time of administration, interactions with estrogen dose, maze water temperature, strain of the rats tested, etc., could account for the conflicting results. Clearly some standardization in methodologies will be required before the specific role of progesterone in hormone supplementation can be understood. In light of the failure of the WHI, HERS, and other clinical trials, it becomes particularly pressing to examine these issues if HT is to be reconsidered.

DO PROGESTERONE OR ITS METABOLITES ENHANCE RECOVERY AFTER INJURY TO THE BRAIN? Unlike the HT/supplementation research, studies using animal models of TBI and stroke more consistently demonstrate that progesterone has beneficial effects. Based on a number of studies, we now know that natural progesterone given to both males and females: (1) can easily cross the blood-brain-barrier (Schumacher et al., 2003) and dramatically reduce edema to barely measurable levels in the injured animal brain (Roof et al., 1996; Roof and Stein, 1992); (2) can reduce lipid peroxidation and the generation of isoprostanes, which in turn contribute to post-injury ischemic conditions (Roof and Fritts, 1997); (3) protects neurons distal to the site of injury which would normally die after TBI (Roof et al., 1994); (4) produces significant sparing of cognitive, sensory and spatial learning performance in laboratory rats after bilateral injury of the MFC (Roof et al., 1994); generates metabolites which (5) reduce pro-apoptotic and increase anti-apoptotic enzymes (Djeballi, Hoffman and Stein, 2003) and (6) reduces the expression of pro-inflammatory genes and their protein products (Pettus et al., 2002); (7) enhances oligodendrocyte-induced remyelination in young and aged rats with demyelinating disorders (Ghoumani et al., 2003; Ibanez et al., 2003); (8) produces effects repeatable across species (both mice and rats) with comparable effective doses (Lowery et al., 2002; Goss, Hoffman and Stein, 2003;); and (9) as shown in the work of other groups using two different models of cerebral ischemia, significantly reduces the area of necrotic cell death and improves behavioral outcomes (Jiang, et al., 1996).

In senescent subjects of both sexes, there are lower levels of circulating steroids, and this could affect the organism’s capacity to respond adaptively to TBI. The systemic administration of progesterone to these subjects could have substantial effects on both the immune response to brain injury and the neural repair mechanisms associated with behavioral recovery. With reproductive senescence in female rats, investigators have shown that there is a loss of ‘intrinsic’ neuroprotection after ischemic injury (premenopausal females tend to have better recovery outcomes than males) (Bounds et al., 2003), but with replacement of both estrogen and progesterone the size of the infarcts was significantly smaller (Alkayed et al., 2000). While promising for females, the study by Alkayed et al. (2000) did not examine whether similar progesterone treatments would be as effective in senescent males. There is little else to report on the use of neurosteroids in aged, subjects with brain damaged, with the exception of a few studies suggesting that treatment with progesterone could be successful in other diseases/disorders related to TBI outcomes in aged subjects.

Gangula, Wimalawansa and Yallampali (2002) reported that hypertension morbidity increases in postmenopausal females when hormones like progesterone and estrogen are depleted. This can be reversed after neurosteroid administration. This study also found that progesterone regulates the effects of calcitonin gene-related peptide (CGRP), a potent vasodilator. The hypotensive effects of CGRP were significantly enhanced in the presence of estrogen or progesterone treatments in both aged and younger female rats. Obviously, the control of blood pressure in old subjects could play a role in the cascade of injury events following a TBI and needs to be examined after progesterone treatment in the elderly. Also, increasing vascular efficiency could reduce some of the cognitive deficits and dementias caused by loss of blood flow to the brain often seen in elderly patients. As noted,

Gibbs (2003) recently reported that aging, combined with loss of ovarian function, causes substantial reduction in ChAT and trkA mRNA in the medial septum and nucleus basalis relative to younger animals.

Progesterone’s beneficial effects on the aging nervous system have also been reported by Azcoitia et al. (2003) and by Ibanez et al., (2003) who found that supplementary progesterone promotes the expression of myelin proteins in the damaged sciatic nerves of young adult rats and in 22- to 24-month-old males with nerve crush injuries. Ibanez et al. took this work further and studied whether treatment with progesterone in young and aged rats enhances remyelination in the brain itself after damage to brain-stem white matter. While the process of repair took longer in the aged rats, treatment with progesterone doubled the expression of myelin seen in the aged controls. In mature animals, progesterone substantially reduces injury-induced cytotoxic and vasogenic swelling and leads to enhanced morphological and behavioral recovery after TBI in young adult animals. In a clinical trial at Emory, there have been no adverse events attributed to progesterone treatments in 100 patients with moderate to severe blunt head injury (average age 39) and first-pass analyses showed a substantial decrease in brain-injury related mortality in the progesterone treated group.

We have previously shown that contusion injury to the medial frontal cortex in young adult rats causes severe deficits in the acquisition of a spatial learning task in the Morris water maze (Hoffman, Fulop and Stein, 1994). Damage to the frontal cortex will also produce enduring bilateral sensory neglect of the forelimbs and tongue (Hoffman, Fulop and Stein, 1994; Lindner et al., 1998).

In our studies, five days of post-injury treatment with progesterone significantly improved spatial learning and sensory performance compared to injured, untreated counterparts. In addition to the neuronal loss, the injury-induced disruption of the blood-brain barrier has been associated with vasogenic edema. In our injury model there is severe damage to the vasculature with concomitant disruption to BBB integrity (Duvdevani et al., 1995).

Progesterone reduces the permeability of the BBB to macromolecules, but not to sodium ions in vivo (Betz and Coester, 1990a; Betz and Coester, 1990b), and growing evidence suggests that this neurosteroid also alters the function of aquaporins 4 and 9 in astrocytes, thus regulating swelling and water exchange (Badaut et al., 2001; Badaut, 2002; Amiry-Moghaddam et al., 2003). We found evidence that the neurosteroid plays a role in reconstituting the BBB, thus preventing blood-borne inflammatory agents from entering into the brain and causing further swelling, damage and loss of cells.

Neurologists and neurosurgeons often stress that “brain edema accounts for much of the morbidity and mortality associated with common neurological conditions such as head trauma, brain tumors, stroke, and liver failure (Papadopoulos, Krishna and Verkman, 2002). Vasogenic edema occurs when the BBB is compromised and plasma fluid enters the brain parenchyma. Cytotoxic edema occurring somewhat later than the vasogenic variety is caused by accumulation of fluid within the brain cells themselves. In particular, reactive astrocytes take up fluid and then cause further damage because they cannot participate in repair mechanisms and homeostasis. One of the major beneficial effects of progesterone is that it substantially reduces both vasogenic and cytotoxic edema after TBI (Roof, Duvdevani and Stein, 1993). In the model of middle cerebral artery occlusion (MCAO), progesterone reduced tissue water content significantly.(Betz and Coester, 1990a). In a neurogenic model of cerebral edema, both progesterone and allopregnanolone reduced plasma extravasation (Limmroth, Lee and Moskowitz, 1996). In our laboratory, following bilateral contusions of the medial frontal cortex, brain water content was significantly reduced in pseudopregnant females, in ovariectomized females given progesterone, and in males given injections of progesterone (Roof, Duvdevani and Stein, 1993; Roof et al., 1996; Wagner et al., 2004). Progesterone was able to reduce cerebral edema even when treatment was delayed up to 24 hours after injury (Roof et al., 1996).

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25

Although progesterone does not have the characteristic structure of an antioxidant, high endogenous levels of, or exogenous treatments with, this hormone is effective in reducing free radical damage.

Pregnancy itself can reduce lipid peroxidation in brain homogenates and mitochondria (Subramanian et al., 1993; Goodman et al., 1996: Roof, Hoffman and Stein, 1997; Vedder et al., 1999). Progesterone administration reduces lipid peroxidation in three different types of in vitro free-radical-generating systems in a dose-dependent manner (Subramanian et al., 1993; Vedder et al., 1999) and increases the levels of critical free-radical-scavenger enzymes (Subramanian et al., 1993). A recent study demonstrated that progesterone protects mitochondrial function in neural cells in vitro after mechanical stretch injury (Malcom and Cargill, 2000). Although it did not involve direct manipulation of progesterone levels, a recent study demonstrated that in very severely injured females with brain injury, prostaglandin levels are roughly half those seen in males with the same brain injury (Bayir et al., 2004). These studies suggest that progesterone reduces lipid peroxidation, most likely through a combination of a decrease in generation of free radicals and enhancement of endogenous freeradical-scavenging systems.

To highlight the importance of the type of hormone used, we recently completed a study comparing 4, 8, and 16 mg/kg of the synthetic progestin medroxyprogesterone acetate (MPA) in the treatment of cerebral edema following bilateral fronto-cortical contusions in adult male rats. Two days after injury the animals given the highest dose of MPA had edema levels comparable to the reduced edema after treatment with 4 mg/kg of natural progesterone. The 8 mg/kg of MPA also reduced edema but not to the level seen in the 16 mg/ kg MPA or the 4mg/kg of natural progesterone. Interestingly, unlike natural progesterone and regardless of the dose, the MPA did not enhance behavioral recovery, suggesting that the pathways of action of the two agents might diverge. This is in some respects similar to the effects of methylprednisolone, which may reduce edema but ends up killing more patients than giving no steroid treatment (Sauerland and Maegele, 2004). Given the inconsistent findings on the molecular effects of MPA in the CNS of laboratory animals, further investigation of the differences or similarities between natural and synthetic progestins is critical for determining whether treatment with these two forms of the hormone is appropriate for administration in senescent males and females. Obviously, the same question needs to be applied to clinical testing in subjects with brain injury as well.

Progesterone administration has been shown to decrease the infarct area after a stroke caused by arterial occlusions in rats (Jiang et al., 1996). Accompanying this decrease were improvements in body weight and neurological outcome. Progesterone appears to be effective in treating acute global ischemia in cats (GonzalezVidal et al., 1998). In this injury model, there is a loss of 54-85% of neurons in the CA1 and CA2 subfields. After pre- and posttreatment with progesterone in ovariectomized cats, neuronal loss was reduced to between 21-49%. Recently, Chen, Chopp and Li (1999) have shown that progesterone can decrease sensory neglect and enhance sensorimotor performance after stoke in the rat. These findings have been confirmed in a recent series of studies by Gibson and Murphy (2004). In a model of penetrating brain injury, progesterone significantly decreased the accumulation of astrocytes (Garcia-Estrada et al., 1993; Garcia-Estrada et al., 1999).

Progesterone given to rats with spinal cord contusions reduced tissue loss at the epicenter of the injury. Tissue sparing was accompanied by better outcomes on the Basso-Beattie-Bresnehan locomotor rating scale at six weeks post-injury (Thomas et al., 1999). Baulieu and colleagues (2000) found that progesterone is needed for remyelination of the injured sciatic nerve (Baulieu and Schumacher, 2000). Following a lesion caused by freezing the tissue, they increased remyelination by 25% over controls with local injections of progesterone or pregnenolone. Progesterone and its GABAergic metabolites have been known to have strong anti-seizure actions, especially in relation to catamenial 26 BRAIN INJURY PROFESSIONAL

epilepsy in females. Currently, there are two NIH-funded clinical trials for the progesterone treatment of epilepsy in females.

Cerebral edema is often a major complication of head injury leading to further neuronal loss and severe disability or the death of head trauma victims (Lighthall, Dixon and Anderson, 1989; Miller, Piper and Dearden, 1993). We demonstrated progesterone’s capacity to reduce post-injury brain edema and enhance functional recovery (Roof and Stein, 1992; Roof, Duvdevani and Stein, 1993; Roof et al., 1994; Roof and Stein, 1994; Roof et al., 1 996). In both males and females, progesterone treatment after TBI improved spatial learning performance, dramatically reduced edema and subsequent neuronal degeneration, and restored the integrity of the BBB. Analysis of the temporal parameters of progesterone’s action also showed that the window of opportunity for the reduction of edema was large (up to 24 hours post-injury), making the timely administration of progesterone to head-injured patients feasible and practical (Roof et al., 1996).

These results in combination form a complicated but very interesting picture. Obviously, both the human and animal literature on HT present conflicting results, and the reasons for some of these conflicts have been discussed in this short review. The work with progesterone in brain-damaged laboratory animals of both sexes and across different species is more consistent, but this may simply be due to the fact that the field is newer than HT research and there are fewer studies comparing and contrasting all the potential variables.

What is important is that progesterone seems to have the potential to enhance neuronal repair, in both males and females, something that has not been studied as much compared to estrogen—for all the obvious reasons. Far less attention has been paid to progesterone’s potential in its own right as a neuroprotective agent that might also reduce some of the heath risks associated with hormonal loss in aging and menopause. Whether the ‘case for progesterone’ in HT deserves further study is a judgment each reader will have to make.

About the Author

Donald G. Stein, Ph.D., is a physiological psychologist and Asa G. Candler Professor of Emergency Medicine at the Emory University School of Medicine in Atlanta, Georgia. Stein’s research has long focused on the processes underlying recovery of function after traumatic injury to the brain. His laboratory was one of the first contemporary groups to confront the doctrine of localization of function, by demonstrating that sparing of function in adult subjects can occur after bilateral removal of ‘critical’ structures. This work led a renewed examination of how recovery might be induced in the damaged brain of adult subjects. Stein’s lab has investigated treatments for brain injury, among them Nerve Growth Factor and fetal tissue grafts. The first lab to demonstrate sex differences in the outcome of severe injuries to the frontal cortex, Stein’s group found that the recovery was highly related to the hormonal state of the females at the time of injury. Later investigations showed that progesterone played a key role in promoting functional recovery through its ability to reduce cerebral edema in both males and females.

Stein’s current research focuses on determining the physiological substrates responsible for progesterone’s beneficial effects in the treatment of TBI. The National Institutes of Neurological Diseases and Stroke (2001-2005) are currently funding this research and its clinical applications.

Footnotes

* Although this limitation may change as non-feminizing estrogens become available for clinical application. ** Epting and Overman provide an informative brief discussion of problems and pitfalls in correlating menstrual cycle to psychological performance that might be helpful to those not expert in this field. *** The hippocampus has received particular attention in this context because cellular electrophysiological changes in long-term potentiation (LTP) play a role in memory formation. See Mehta, MR (2004), Cooperative LTP can map memory sequences on dendritic branches, Trends in Neurosci, 27:69-72; Lynch, MA (2004) Long-term potentiation and memory, Physiol. Rev. 84:87-136; Martin, SJ and RG Morris (2002), New life in an old idea: the synaptic plasticity and memory hypothesis revisited, Hippocampus, 12:609-36; and, because LTP is also correlated with alterations in dendritic and synaptic morphology, Woolley, CS and BS McEwen (1992), Estradiol mediates fluctuation in hippocampal synapse density during the estrous cycle in the adult rat, J. Neurosci., 12:2549-2554.

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ACKNOWLEDGEMENTS:

The author wishes to thank Leslie McCann for editorial help.

Research in our lab has been supported by NIH grants 1 R01 NS40825 and1 R01 NS38664.

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HEALTH CONCERNS OF WOMEN WITH BRAIN INJURY

by Margaret A. Nosek, PhD The long-term health of women with disabilities has only recently surfaced as an issue urgently in need of attention. Although the women’s movement has made great strides toward equity in research and health care services for women, and similarly, the disability rights movement has had a major impact on opening our society for participation by people with physical, mental, and sensory impairments, neither has included the health of women with disabilities as a priority in their advocacy agenda. As the population of women with disabilities grows at an accelerated rate, due to the aging of the population as a whole, advancements in life sustaining medicine and technology for people of all ages, and the consequences of war and domestic violence, these issues can no longer be ignored. No disability category has grown as a result of these factors more than traumatic brain injury (TBI). With women constituting only about 20% of persons with TBI, however, their particular journey through adjustment to disability and life-long maintenance of wellness has received very little attention. What follows is a review of what is known about the demographics and causes of TBI in women, their recovery, psychosocial problems, reproductive and sexuality problems, secondary conditions, health promotion, and access to health care.

It was a surprise to discover the paucity of medical literature on the health concerns of women with TBI. There has been research on estrogen and progesterone in experimentally brain injured rats, brain injury that results from pregnancy, and gender differences in recovery from brain injury, particularly in children, but not on the health issues that might disproportionately affect women who have incurred a brain injury, completed whatever rehabilitation was available to them, and are continuing their lives as members of their families and communities. It is not that the many studies on TBI funded by the National Institute on Disability and Rehabilitation Research (NIDRR) (including 16 TBI model systems, 2 RRTCs, and 12 projects funded by other mechanisms) or other federal agencies are not looking at health and rehabilitation outcomes, the problem is that so few are analyzing their data in a way that would reveal gender differences, nor are they even collecting data on health conditions unique to women. As Bell and Pepping (2001) state in 28 BRAIN INJURY PROFESSIONAL

their ground-breaking article, “Although most of the residual effects of TBI are gender-neutral, women may present some unique problems in relation to pain and endocrine issues, reproduction, and sexual functioning. In addition, a woman’s roles as wife, mother, and daughter are likely to result in a different constellation of family dynamics when TBI is introduced” (p. 169).

DEMOGRAPHICS AND CAUSES OF TBI IN WOMEN The classic profile of a person with TBI is a young male, often a substance abuser with a high-risk lifestyle. The profile of women with TBI differs in many ways. Women tend to be older and are less likely to have private insurance, an arrest history, or pre-and post-injury employment (Wagner, 2000). The Traumatic Brain Injury National Data Center at Kessler Medical Rehabilitation Research and Education Center reported that 74 percent of the cases in its database as of 2002 were male. This statistic should be viewed with caution, however, since it only includes people who received treatment at one of the 16 TBI Model Systems projects funded by NIDRR, which are hospital based and primarily accept only patients with insurance coverage. Another study interviewed people with head injuries living in the community and found that the ratio of men to women with head injury in the non-hospitalized population is closer to 3:2 or only 60 percent males. This may be the case partly because females are more likely to receive blows to the head (for example, through spousal abuse) that are not viewed as serious enough to send them to the hospital (www.mssm.edu/tbinet/alt/faqs/faq17.html, RTC on Community Integration of Individuals with Traumatic Brain Injury, Mount Sinai School of Medicine).

In addition to the usual causes of TBI, including motor vehicle accidents, gunshot wounds, assaults, falls, and anoxia, women are much more likely than men to receive a brain injury as the result of domestic violence. For women who are battered, assault is not a onetime occurrence, and the cumulative effect of even mild injuries can lead eventually to serious consequences in day-to-day functioning.

One study examined a sample of women who presented in emergency departments with injuries from domestic violence and found that

30 percent had experienced loss of consciousness and 67 percent of the women reported residual problems that were potentially head-injury related (Corrigan et al., 2003). There is a significant correlation between frequency of being hit in the head and severity of cognitive symptoms, and early intervention can diminish their adverse impact on outcome. Thus it has been strongly recommended that women who are battered should be routinely screened for traumatic brain injury and postconcussive syndrome (Jackson et al., 2002; Corrigan et al., 2003).

There are also connections between TBI in women and alcohol dependency, childhood sexual abuse, and adult revictimization experiences. The experience of childhood sexual abuse, commonly found in the histories of women with alcohol problems, may predispose women to the occurrence of head injuries sustained through alcoholrelated motor vehicle accidents and/or physical violence perpetrated by chemically dependent partners (Gutman and Swarbrick, 1998).

This highlights the need for thorough evaluations, as the symptoms of mild traumatic brain injury (MTBI) overlap, and thus may be confused, with post-traumatic stress disorder (PTSD). Moreover, each has its respective requisite interventions. Finally, because of the high probability that women receiving services from battered women’s programs may also be experiencing postconcussive syndrome, Ackerman and Banks recommend that such programs offer neuropsychologically-informed feminist psychotherapy (Ackerman and Banks, 2003).

Two other subpopulations of women that are overlooked are those who are elderly and those with eating disorders. TBI in older women is frequently not reported at all. The cause of injury may be from elder abuse or falls, especially in women over age 85 (Bell and Pepping, 2001). An additional group of women has come to light recently in the Terri Schaivo case, women who have eating disorders.

While not the result of a trauma, eating disorders can precipitate hypoxic ischemic brain injuries (HIBI). In either case, no information could be found on the proportion of men compared to women in a persistent vegetative state with no advance directive who are left to die by removal of “artificial” life support or withdrawal of nutrition and hydration.

Considerably more research is needed on women who do not make it into the federally funded databases. This would include women who are battered who are undiagnosed and women who have inadequate or no health insurance and are discharged from acute care to home or custodial care with no access to rehabilitation services.

Once these women are identified and included in statistical analyses, it is quite likely that TBI will become known as an equal opportunity disabler.

RECOVERY There are mixed findings on whether or not women have better outcomes than men in recovering from TBI. A recent study showed that men had significantly greater levels of injury severity as indicated by the Glasgow Coma Scale scores and length of posttraumatic amnesia when compared to women, but there were no significant sex differences in outcome measures or in injuries not associated with the central nervous system (Slewa-Younan et al., 2004). Similarly, another study found that when persons older than 50 years were excluded from analysis, there was no protective effect of female gender on outcome (Coimbra et al., 2003). Other evidence showed that women fare worse than men in the initial stages of recovery in terms of brain swelling and intracranial hypertension, especially those aged 50 years and younger, leading to the recommendation that younger women may benefit from more aggressive monitoring and treatment of intracranial hypertension (Farin et al., 2003). Female gender was also found to be a significant risk factor for postconcussional disorder, along with poor social support, and elevated self-reported depressive symptoms at one month postinjury (McCauley et al., 2001), conditions that are significantly more prevalent in women.

Other evidence indicates that female gender is a protective fac-

tor in recovery from TBI. Beginning in the early 1990’s, investigators examining the effect of gender on recovery in rats who were experimentally brain injured found that estrogen and progesterone had protective effects (Roof et al.,1993; Roof and Hall, 2000) and that males incurred peak protein degradation and neurodegeneration much more quickly than females (Kupina et al., 2003). Recent studies in humans have found that this neuroprotective effect may be related, in part, to direct and indirect sex hormone-mediated antioxidant mechanisms (Stein and Hoffman, 2003; Bayir et al., 2004).

Although some evidence shows that women fare better during initial stages of recovery, they may have worse longer-term outcomes.

This may be related to age, but findings are contradictory. One study found that women age 30 years or older had significantly poorer outcomes at six months than men or younger women, showing no improvement between three and six months postinjury (Kirkness et al., 2004). In reviewing the literature prior to 1998, van Reekum found only eight studies that met the inclusion criterion of reporting outcome measures separately for men and women (van Reekum, 2001).

Limited evidence showed that women fare worse than men for most outcomes, including postconcussive symptom 6 weeks after the TBI, headache, dizziness, insomnia, days of post-traumatic amnesia, and length of stay in hospital. Farace and Alves (2000), in conducting a meta-analysis of gender effects on TBI outcomes, also lamented that in only a small percentage of the total published reports on TBI outcome was outcome described separately for each sex. They found that outcome was worse in women than in men for 85 percent of the measured variables, contradicting the prevailing clinical opinion that women tend to experience better outcomes than men after TBI.

PSYCHOSOCIAL PROBLEMS Women manifest the cognitive and psychobehavioral consequences of TBI differently compared to men. In several studies male gender has been found to be significantly associated with psychological, behavior, and adjustment problems (Geraldina et al., 2003), psychological stress (Schopp et al., 2001), and emotional disturbance (Burton and Volpe, 1988). Men also have more problems with memory than women (Geraldina et al., 2003). A qualitative study of women with TBI identified awareness of change, the emotional reaction, struggling to make sense, adaptation, and acceptance as prominent themes (Howes et al., 2005). No studies have been found that determine gender differences on other psychobehavioral sequelae of TBI, such as increased suspiciousness, rage reactions, diminished capacity for empathy, child-like demeanor (Bell and Pepping, 2001). Many studies have shown that women have significantly greater problems with depression than men (Alfano, et al., 1992; Glenn et al., 2001; Levin et al., 2001; Geraldina et al., 2003).

The measure of family and social outcomes in people with TBI is commonly conducted with the Community Integration Questionnaire (CIQ) (Willer et al., 1993). Only two studies have examined gender differences in scores and found, not surprisingly, that women scored higher on the CIQ home integration scale, even when new scoring guidelines were used (Kaplan, 2001;Goranson et al., 2003). According to the Center for Outcome Measurement in TBI, women tend to have higher CIQ scores for total, home integration, and social integration than males, but lower productivity scores (www.tbims.org/combi/ciq/ciqprop.html). These results indicate that the authors of the CIQ have not met their goal of creating a gender-neutral assessment instrument, and indeed, the validity of this instrument for women is seriously in question.

Items in the home integration scale ask about cooking, shopping, and housekeeping; items in the productivity scale ask about work, school, and volunteer activities. Both of these domains are highly gender biased and predispose men to poorer outcomes on home integration and women to poorer outcomes on productivity. Further research on gender and CIQ scores is essential before this widely used instrument can be considered valid for women.

BRAIN INJURY PROFESSIONAL

29

Women face serious disparities in access to vocational rehabilitation services as well as employment. A study of client outcomes in the Missouri Department of Vocational Rehabilitation found that despite similar injury severity, neuropsychological and demographic characteristics, only 4.4 percent of the women were successfully employed through the agency, compared to 23.6 percent of the men. In addition, 73.9 percent of the women had services terminated after being accepted as clients but before services were initiated, compared to 56.4 percent of the men (Bounds et al., 2003).

If we were living in a society where mothers and fathers shared equal responsibility for, and influence upon, their children, then the substantial literature on the effects of parental TBI on the behavior of parents and children might be valid for women. Only one article addressed family roles of women with TBI, finding that having a father with TBI seemed to be correlated with more parent-child disruptions than having a mother with TBI. Acting-out behaviors (such as having temper tantrums, disobeying) and emotional problems were more frequent in families with a father with TBI (Pessar et al., 1993).

Studies of gender identity and gender roles have shown that men expressed greater feelings of gender inadequacy postinjury than did the women. The men appeared to depend more heavily on traditional gender-specific activities before and after injury to define and support gender role; the women relied more on cross-gender activities. The women appeared to be able to maintain more preinjury activities postinjury than did the men. Postinjury possession of a personally satisfying sense of gender appears to be related to the ability to maintain much of the preinjury activities that defined and supported the participants’ sense of masculinity or femininity (Gutman and Napier-Klemic, 1996). A study comparing men and women with and without TBI found that although female participants without TBI have more positive feelings about their sexuality than male participants without TBI, the opposite is true for TBI participants. Male participants with TBI had the most concerns about their sexuality of all four groups (Gaudet, et al., 2001).

General measures of quality of life and life satisfaction are also almost never analyzed by gender. Of the two studies found that did examine gender and quality of life in people with TBI one reported that women had poorer scores than men (Seibert et al., 2002) and the other found the exact opposite (Steadman-Pare et al., 2001).

REPRODUCTIVE AND SEXUALITY PROBLEMS TBI can cause primary sexual dysfunction, infertility, irregular menstrual cycles, and dysfunctional uterine bleeding, depending on the location of the lesions and their interference with the neuroendocrine system, particularly the hypothalamic-anterior pituitary-ovarian axis, reducing the production of estradiol (Bell and Pepping, 2001). There is a high potential for adverse interactions between TBI-related medications and oral contraceptives; however almost all of the literature on adverse medication effects centers on men. Certain medications may be associated with delay in arousal or increase in libido in women (Bell and Pepping, 2001).

Women with TBI reported more frequent difficulties in sexual arousal, pain with sex, masturbation and vaginal lubrication. Predictors of these sexual difficulties included age at injury and having milder injuries; however, depression and an endocrine disorder combined were the most sensitive predictors of sexual dysfunction (Hibbard et al., 2000). There has been some discussion of pharmacotherapy and nonpharmacotherapy treatment for women with TBI (Sandel, 1997).

As in all women, amenorrhea is a likely sign of pregnancy. It is critically important that women with TBI have access to pregnancy tests and receive information about side effects of their medications on the fetus, such as congenital malformations or mental retardation; their risk for seizures during pregnancy, labor, and delivery; and the importance of careful monitoring during pregnancy as well 30 BRAIN INJURY PROFESSIONAL

as monitoring of the newborn who is breastfeeding for possible nervous system depression (Bell and Pepping, 2001).

There has also been a call for more sensitivity to issues related to sexual orientation in the rehabilitation services offered to women with TBI. Benign neglect of these issues may impede progress and lead to depression, decreased self-esteem, and decreased self-confidence (Mapou, 1990).

No studies have been conducted on how often women with TBI, compared to women in the general population, are tested for and found to have sexually transmitted infections, including HIV/AIDS. We do not know if they are less likely than non-disabled women to receive information on contraceptive options, as has been found in mixed samples of women with disabilities. We also do not know if women with TBI are less likely to receive breast and cervical cancer screening, are diagnosed at later stages of cancer, or experience limitations in treatment options compared to non-disabled women, as has been found in mixed samples of women with disabilities.

SECONDARY CONDITIONS As with all of the topics presented so far, studies of the effects of TBI on the long-term health of women are rare (Bell and Pepping, 2001). One study found that women with TBI reported greater frequency of headaches, colds, weight changes, and temperature changes than did the control population. Older women with TBI, in particular, were more likely to report difficulties with thyroid conditions, sleep disturbances, loss of urinary control, and arthritic changes (Hibbard et al., 1998).

One of our recent studies confirms some of these findings. For more than a decade, the Center for Research on Women with Disabilities has been examining health disparities for women with a spectrum of limitations in physical functioning. From 2000 to 2004 we conducted a study of 443 women with physical disabilities recruited primarily from local government-sponsored health care clinics (Nosek et al., in press). This sample was about equally divided among white, black, and Hispanic; the average age was 53 years old; most were living in poverty and only a handful were working even though 59 percent had some post-secondary education. Only a third were married or in a marriage-like relationship. Unfortunately, this is the classic profile of samples of women with disabilities.

We developed a questionnaire about the health problems they were experiencing and used it to interview them seven times over the span of one year. With this information we were able to compare their experience to women in general and found numerous disparities. For the entire sample, we found extremely high rates of pain (83.8%), fatigue (77.4%), vision impairment (62.5%), weakness (62.5%), circulatory problems (60.1%), sleep problems (59.8%), spasticity (58.0%), depression (56.9%), blood pressure problems (56.2%), memory problems (50.3%), and obesity (47.6%).

Of the 443 women in our study, however, only 6 had a traumatic brain injury and 45 had stroke. Although these subsamples are too small to conduct valid analyses, it is useful to compare simple percentages between these two subsamples and with the rest of the sample, which included women with joint and connective diseases, multiple sclerosis, spinal cord injury, neuromuscular diseases, post polio, and other physically disabling conditions. Table 1 highlights the differences among these three groups.

The profiles of secondary conditions for women with TBI compared to women with stroke are quite different, no doubt reflective of the difference in the average age for each group. In the small sample of women with TBI the most common secondary conditions were pain, fatigue, memory problems, overweight, and weakness. For the women with stroke the most common conditions were blood pressure problems, overweight, pain, vision impairment, weakness, fatigue, circulatory problems, sleep disturbances, and depression. It is notable that for women with TBI, research on the secondary conditions with the highest prevalence is virtually absent in the literature.

Prevalence and Problem Index for Secondary Conditions among Women with TBI and Women with Stroke Compared to Women with Other Physical Disabilities

Table 1

Secondary Condition

Women with TBI (N=6)

Women with Stroke (N=45)

Women with various Physical Disabilities (N=392)

emergency department disposition of persons with traumatic brain injury found that, after adjusting for demographic, clinical, and hospital characteristics, the uninsured and black females were significantly less likely to be hospitalized (Selassie et al., 2004).

We do not know if women with TBI, like women in samples of mixed disabilities, are less likely than women in the general population to have public or private health insurance. The combined effect of unemployment, poverty, and single marital status, which are disproportionately prevalent among women with physical disabilities, make them much less likely to have private health insurance than non-disabled women. Among women with TBI who have insurance, we do not know whether or not it covers the prescription drugs they need, physical or occupational therapy, assistive devices, medical equipment, medical supplies, or in-home attendant care services. We do not know if women with TBI are able to obtain needed health services from both primary care physicians and specialists, or if they receive their usual medical care from specialists.

Pain

83.33%

73.33%

84.95%

Fatigue

83.33%

62.22%

79.08%

Overweight

66.67%

73.33%

74.49%

Vision impairment

50.00%

71.11%

61.73%

Weakness

66.67%

68.89%

61.73%

Circulatory problems

16.67%

60.00%

60.71%

Sleep problems/ disturbances

33.33%

60.00%

60.20%

Spasticity

50.00%

55.56%

58.42%

Depression

50.00%

60.00%

56.63%

Blood pressure problems

16.67%

77.78%

54.34%

Memory problems

83.33%

51.11%

49.74%

Bowel problems

33.33%

42.22%

46.17%

Stomach problems

33.33%

40.00%

38.78%

CONCLUSION

Diabetes

0.00%

53.33%

34.95%

Injuries

33.33%

31.11%

31.12%

Other bladder problems

33.33%

22.22%

29.59%

Urinary tract infection

50.00%

17.78%

28.57%

Arthritis

33.33%

48.89%

25.00%

Osteoporosis

0.00%

22.22%

26.28%

Hearing impairment

33.33%

26.67%

21.68%

Carpal-tunnel

0.00%

15.56%

19.13%

Cardiovascular problems

0.00%

22.22%

18.11%

Yeast infection/vaginal infection

0.00%

8.89%

11.73%

Contractures

0.00%

11.11%

18.62%

From the vast majority of documented studies on the causes of TBI, recovery during the acute phase of treatment, outcomes after comprehensive rehabilitation, levels of community integration, employment outcomes, problems with intimate and other family and social relationships, reproduction and sexuality, and long-term health and functional outcomes, we have learned nothing about the TBI in women. A consensus panel on TBI convened by the National Institutes of Health (NIH) has suggested that women are one group that needs more attention, particularly given the few studies indicating that men and women experience different cognitive, emotional, and vocational outcomes following TBI (Bounds et al., 2003).

Funding for research on TBI is substantial. The National Center for Medical Rehabilitation Research at NIH funds a Cooperative Multi-center TBI Clinical Trials Network at Virginia Commonwealth University. The National Institute on Disability and Rehabilitation Research funds 16 TBI Model Systems projects and 24 other studies of TBI. The 1997 Traumatic Brain Injury Act ((P.L. 104-66, reauthorized as part of the Children’s Health Act of 2000, P.L. 106310) (www.biausa.org/Pages/home.html) provides funding for TBI research to the Centers for Disease Control and Prevention ($5.7 million in 2005), the Health Resources and Services Administration ($9.5 million), state grant programs ($6.5 million), and protection and advocacy programs ($3 million). Why then, do we know so pathetically little about TBI in women?

There is an emerging discontent about this gross inequity among women researchers interested in TBI. It is inconceivable that research on TBI has come as far as it has and achieved such substantial federal funding while giving only token attention to issues of concern to women with TBI. It will take well publicized, organized advocacy by researchers, women with TBI, and organizations representing people with TBI to bring about more equitable attention and funding to the problem of removing the many serious disparities in the health of women with TBI.

Heart disease

0.00%

24.44%

15.56%

Respiratory infection

33.33%

13.33%

15.56%

Anemia

33.33%

13.33%

14.03%

Menstrual problems

16.67%

8.89%

11.48%

Speech impairment

50.00%

33.33%

7.14%

Bold = substantially greater than the sample of women with various physical disabilities Gray = substantially less than the sample of women with various physical disabilities

HEALTH PROMOTION We could find no reported studies on health promotion for women with TBI. Although there have been studies of health promoting behaviors in samples of women with various types of physical disabilities, the number of participants with TBI is generally too small to analyze separately. As a result, we know nothing about the smoking, diet, and physical activities behaviors of women with TBI, nor the cognitive and social supports they may need to address problems with these behaviors. Some of the symptoms of TBI, such as memory problems, executive function deficits, and other cognitive problems may serve as barriers to participation in organized health promotion programming. It is also very likely that these problems play a role in preventing women with TBI from participating in health promotion research. For both situations, innovative techniques need to be developed for recruitment, retention, and outcome assessment.

ACCESS TO HEALTH CARE Significant disparities in access to health care exist for all women with disabilities, but this issue has only been addressed for women with TBI in two studies. A qualitative investigation of perceptions of care access among rural and urban women following brain injury identified two major themes (Sample and Darragh, 1998).

Half of the women interviewed had difficulty obtaining a diagnosis of brain injury and experienced serious personal and professional consequences as a result. All participants experienced barriers to accessing care, including problems with service providers and service systems, financial challenges, traveling for services, lack of information or services in their area, lack of care coordination, and funneling. A study of the effect of insurance status, race, and gender on

About the Author

Margaret A. Nosek, Ph.D., is Professor in the Department of Physical Medicine and Rehabilitation and founder and Executive Director of the Center for Research on Women with Disabilities (CROWD) at Baylor College of Medicine. Dr. Nosek is a 1984 graduate of The University of Texas at Austin with a doctorate in rehabilitation research. Her research and writing have focused on women with disabilities, specifically their psychosocial and physical health, secondary conditions, health promotion, reproductive health care, sexuality, self-esteem, and experiences with violence and abuse. As a person with a severe physical disability, she has been a pioneer and activist in the disability rights movement, including vigorously supporting passage of the Americans with Disabilities Act. The president’s Committee on Employment of People with Disabilities has honored her as a “Disability Patriot.”

BRAIN INJURY PROFESSIONAL

31

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Traumatic Brain Injury Serving the community for two decades, Beechwood has expanded its TBI offering to encompass broad neurological services as well as new Behavioral Remediation and Late Adolescent programs.

In addition to TBI, we serve individuals with brain damage due to: • Anoxia/Hypoxia due to drowning, heart attack, drug overdose, alcohol poisoning, anesthesia errors, etc.

• Electric shock/lightning strike • Degenerative diseases • Infectious diseases • Early stage moderate dementias • Tumors • Brain surgeries • Many neurological disorders

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Our facilities are adapted to accommodate all levels of accessibility.

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REHABILITATION

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A Community-Integrated Brain Injury Program An affiliated service of Woods Services, Inc. www.beechwoodrehab.org

Langhorne, PA • Bensalem, PA BRAIN INJURY PROFESSIONAL

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Participatory Action Research and Women Living with the Consequences of Brain Injury A Call to Arms

by Candace Gustafson, R.N., Marcia Cooper and Marvel Vena THE PROBLEM We are the women living with the consequences of brain injury (BI). All of us (we refer here to the two authors and a host of friends who helped us with this article) are at least fifteen years post injury. As survivors, as well as advocates for people with disabilities, we are dismayed by the lack of research addressing the unique issues of women living with the consequences of brain injuries. To date, the vast majority of the research has focused on the male population. While much of the paucity reflects the traditional chauvinism in research, some changes are being noted, e.g., heart disease is now recognized as an un-equal opportunity killer. It is time for this change to be echoed in the world of disability.

The research paradigm to facilitate this change already exists: Participatory Action Research (PAR). As early as 1989, McTaggart outlined the sixteen tenets of Participation Action Research. Chief among them is the statement that “participatory action research is collaborative [stress is mine, CG]: those responsible for action are involved in improving it. The collaborating group is widened from those most directly involved to directly involve as many as possible of those affected by the practices concerned (p. 3).” More recently, the American Psychologist (2003, Volume 58, Issue 4) focused on research and disability. Tate and Pledger (2003) called for a new paradigm in disability research and appealed for “consumer input in research (p.

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293).” Gil, Kewman and Brannon (2003) called for a “reframing of relationships with consumers (p. 307).”

There have been attempts to utilize PAR in research; however, there are far too few studies adhering to the core tenets of PAR. We, the constituents, must be involved from the conceptual stage to the dissemination and application of results. Too often, investigators feel they are meeting the demands of PAR methodology by holding focus groups.

Others incorporate another step and pay the constituent a small amount of money for their feedback. Most of us (women status post-injury) are not adequately compensated when we participated in this research. We often find ourselves in the position of volunteering our time because we feel our input into the research is so critical, too often, we do so at our own expense. Even so, we see the same recycled, poorly designed research that leads nowhere.

SOLUTION Investigators must avail themselves of men and women with traumatic brain injury. And they must do so without exploitation. A scant number of investigators or their consultants have lived with the consequences of brain injury. The only way to gain this knowledge is to have integrated us, the experts, into the research team. We are not insensitive to the harried timeframe of grantsmanship, or the difficulty of networking with suitable con-

stituents, nor to the conflict that exists with early recruitment of stakeholders, thereby removing them from the grant reviewing pool.

Yet, we still feel it is vital for us to be part of the research team from its inception through dissemination of the results. Let us participate as equal partners in the research endeavor. We have lived with the consequences of brain injury and often can identify issues that are not even noted by the research team.

Specifically, as women, we urge investigators to remember that we face issues that are different and at times more complicated than men. Invite us to join the team, attend to our input, and be wary of imposing on our desire to advance our cause.

FOCUS FOR PAR RESEARCH Following are some topics that we believe are critical to our wellbeing as women, and where PAR would be invaluable: 1. Behavior: We need information on how to handle the emotional lability that often accompanies TBI. Are our moods more volatile, our depressions and anxieties harsher as a result of our TBI and its interactions with our naturally fluctuating hormones?

2. Role changes: Women are the axis around which the family revolves. How do we cope to the role changes as mothers, daughters, sisters, etc? What helps?

What doesn’t?

3. Career and employment issues: What happens to us after we are injured? Do we return to work? How long do we continue to work post-injury? What kind of employment do we find? Who among us is successful at resuming her career?

What predicts success?

4. Sexuality: We defer here to the issues raised in this issue by Tina Trudel, PhD. 5. Routine health maintenance: Many women are just seen by their neurologist and perhaps their GYN. How many of us even have a PCP? How many of us receive annual PAP smears and mammograms? How do we cope with the mammogram machines when often a part of our body is paralyzed and our bones may be more brittle?

6. Exercise: In light of the multiple problems post injury (e.g., coordination, balance, paralysis, endurance limitations) what is an effective exercise regimen?

7. Menopause: How do we cope with hormonal changes and their interaction with an already compromised system? What is the course of menopause in women post-TBI? Do we enter it earlier? Why? 8. Aging issues: We know the research has begun, yet are we more prone to arthritis, osteopenia or osteoporosis? There is anecdotal evidence that we are more susceptible to auto immune diseases. Is that true?

9. Psychological issues: What are the psychological challenges that we face? How do we cope with “traditional” issues such as accepting, over achieving, giving up?

Are we different than our non-injured counterparts?

10. Pharmaceutical: Do we respond differently to medications after injury? Are there alternative ways to address these problems?

11. Partnerships: traditional and non-traditional: The divorce rates are reportedly high; particularly among couples whose wife sustained the injury. Often it is the husband who falters in face of the challenge. What is happening to us?

12. Parenthood and Parenting: Should we attempt to get pregnant? And if yes – what would be the safest way to carry a baby to term? How do we resume our roles as mothers? What role should we seek?

13. Violence: Common wisdom suggests that it is not uncommon for us to be battered as well as the batterers. Is this true?

14. Follow up research: One, five or ten years post injury, how do we recover?

What variables enhanced and what impeded our recoveries?

peers and outline the problem. We hope that this will serve as a starting point for the many changes necessary to address this wrong.

Funding agencies must insist on our inclusion. Grant reviewers must not pay lip service to PAR. They should evaluate research based on the criteria outlined by the granting agencies, not based on their pet peeves and philosophies. Researchers claiming to adhere or promote PAR must do so in good faith.

And we, we must be willing to educate, participate, consult, contribute, in any way we can to right this inequity.

About The Authors Candace Gustafson, R.N., CBI I-CE. has spent years working in neurorehabilitation, including tele-rehabilitation (utilizing video and teleconferencing techniques). She has worked as a community health case manager in the greater Boston area for nearly 25 years, and has experience in acute and sub-acute clinical nursing.

She has served as a board and executive committee member of Massachusetts Head Injury Association (MHIA) and founded the Council for the Head Injury Community of MHIA. She has served on the Massachusetts Center for Independent Living Advisory Council, a division of Massachusetts Rehabilitation Commission. She developed the first autonomous peer support group for people with brain injuries in 1986, and has facilitated the development of similar groups in Massachusetts and nationwide. She is a certified clinical instructor and clinical examiner for the American Academy of Certified Brain Injury Specialists. Candace has been liv-

ing with the consequences of TBI for 20 years.

Marcia Cooper is currently working for the Brain Injury Association of Maine. She worked for Maine’s Protection and Advocacy agency and other advocacy organizations. She is past President of Brain Injury Association of Maine.

She is a local and national speaker and educator on disability issues. She has been an advocate for people with disabilities and their families for the last 15 years. Marcia sustained a brain injury in 1990.

Marvel Vena is 24 years post brain injury. She is the past President of the Brain Injury Association of Illinois. She was a founding member of the Governor’s Brain and Spinal Cord Injury Advisory council for the state of Illinois. She has been involved in several brain injury grants both locally and nationally. She has done public speaking on both a local and National level.

She currently is the facilitator for a one of a kind family information group in the Neuro-Surgical family waiting room at Rush University Medical center in Chicago, Illinois. She is also on the Rehab advisory council and ADA advisory council at Rush. She is a caregiver for her mother who has Parkinson’s disease. They reside in a Chicago suburb.

REFERENCES Gill CJ. Kewman DG. Brannon RW, Transforming psychological practice and society: Policies that reflect the new paradigm.

American Psychologist. 58: 305-312, 2003.

McTaggart R. (1989). 16 Tenets of Participatory Action Research. www.caledonia.org.uk/par.htm. Downloaded July 4, 2005 at 1:03 a.m.

Tate DG. Pledger C, An integrative conceptual framework of disability: New directions for research. American Psychologist. 58: 289-295, 2003.

CONCLUSION We recognize that change does not happen overnight. Our goal is to provide a voice to BRAIN INJURY PROFESSIONAL

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professional appointments Speech-Language Pathologist Clinician needed in Galveston, TX to assess and treat speech, swallowing, and cognitive-linguistic deficits of adults with brain injury. Masters Degree, CCC and Texas license or eligibility for same. Will consider Clinical Fellow. If qualified send resume or call: Cynthia Calhoun, PHR, Director Human Resources, Transitional Learning Center, 1528 Postoffice Street, Galveston, TX 77550, (409) 797-1445, Fax: (409) 797-1480, or e-mail: ccalhoun@tlc-galveston.org EOE. RNs, LPNs, FT/PT/FLEX Touro Rehabilitation Center is seeking RNs and LPNs full time, part time and flex for their 24 bed Brain Injury Rehab unit and their 27 bed Physical Rehab unit with Stroke and SCI patients who need bedside rehab nursing caregivers. Prefer Certified Rehabilitation Registered Nurses, 8 or 12 hour shifts, evening or night, with weekendonly options available. Competitive salary. Contact Susan Greco at GrecoS@Touro.com or phone 504 897-8082 to apply.

CNA, REHAB ASSISTANTS, PATIENT CARE TECHS Touro Rehabilitation Center is seeking CNA, Rehab Assistants, and Patient Care Techs for evening and night 8-hour shifts, with weekend-only options available. New Salary ranges and differentials. Contact Susan Greco at 504 897-8082 or by email GrecoS@Touro.com to apply.

PHYSICAL THERAPISTS Touro Rehabilitation Center is seeking staff PT’s for their CARF accredited SCI and general medical rehab programs. PTs with experience in SCI and general rehab preferred. To apply, contact Barbara Adcock at 504 897-8310 or by email at AdcockB@Touro.com OCCUPATIONAL THERAPISTS The Centre for Neuro Skills in Irving, Texas, has full time openings for Occupational Therapists. CNS is a post-acute brain injury rehab clinic offering residential and out-patient rehab for individuals recovering from all types of acquired brain injury. The CNS community based approach focuses on helping clients regain a normal rhythm of living. Therapy is designed to foster a return to a typical athome living situation. CNS offers competitive salary, excellent benefits, CEU, licensing reimbursement and a multi-disciplinary approach. Send resume to hrtx@neuroskills. com or call (800) 554-5448 for more info.

To list your professional appointments on this page, please contact Joyce Parker, (713) 526-6900, or by e-mail: jparker@hdipub.com.

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new and noteworthy Touro Hospital of New Orleans appointed a new CEO, Les Hirsch late last year and hurricane Katrina led his welcoming committee after only one week on the job. Much has been accomplished since then with Touro being the first hospital to reopen after the devastating storm. With many physicians and rehabilitation professionals displaced in various areas of New Orleans, Touro’s Medical Staff remains open to all who want to practice there. Also in the aftermath of Katrina, NABIS Chairman Robert Voogt, PhD, purchased the newly named Neurological Rehabilitation Living Centers Louisiana, located in Covington, Louisiana, just across Lake Pontchartrain from New Orleans.

Hector Gutierrez and his team will manage the facility. Dr. Voogt has also set a Spring 2006 opening date for his 12-suite residence, the Neurological Rehabilitation Living Center in Virginia Beach, Virginia.

Jerry Donovan of Robin Hill Farm in Hillsboro, New Hampshire, recently purchased a multi-building property named the Summer Street Program where he will offer both traditional residential treatment for community re-entry and apartment units with 24-hour support. In Chicago, Aurora Rehabilitation and Living Center opened a 28-bed neuro-rehabilitation program on January 1st, 2006. Lakeview has added four new facilities under its banner in Waterford, Wisconsin, Charlestown, Rhode

Island, as well as Charlottesville and Weyers Cave, Virginia.

Former BIAA and IBIA CEO George Zitnay, PhD, was recently featured on the National Public Radio Span of War Series, entitled Helping Troops Recover from Brain Injuries.

Audio clips of the series can be found at www.npr.org. And, with more US servicemen and women returning home with brain injuries than in previous wars, NABIS will be adding a special panel on Blast Injuries to its upcoming Brain Injury Conference of the Americas in September. The panel will be chaired by former IBIA executive director and NABIS board member Mik Pietrzak, MD, Col USAF MC (ret). More details on this important topic will be available on www.nabis.org.

The International Brain Injury Association Chairman Nathan Zasler, MD, reports that the Seventh Brain Injury Congress will be held in Jerusalem. Scheduled for June 2007, this marks the first time the Congress will take place in the Middle East and will be organized jointly by the Israeli Government and the Palestinian Authority.

IBIA is also planning to launch a new quarterly electronic publication, International Neurotrauma Letter. For more information, visit www.internationalbrain.org.

Items for New and Noteworthy can be sent to mail@hdipub.com.

Free CDC Tool Kit on Concussion for High School Coaches

Concussions can happen to any athlete—male or female—in any sport. More than 300,000 people sustain sports- and recreation-related brain injury every year in the United States. To reduce the number of this type of injury, the Centers for Disease Control and Prevention (CDC), with the support of NABIS and thirteen other partners and experts in the field, has developed a tool

Brain Injury Awareness Month Remember that March is Brain Injury Awareness Month! All NABIS members have been sent an awareness packet developed by the Brain Injury Association of America. These packets include booklets containing legal terms with explanations of laws often encountered over the continuum of care with traumatic

brain injury; a booklet on loneliness and relationships and material on transitioning students from school to adulthood. A communication tip card offers suggestions on ways to communicate with others after a brain injury. Also included is an activity guide to help plan brain injury awareness events, media coverage and advocacy efforts. Additional packets can be obtained kit for coaches titled, Heads Up: Concussion in High School Sports. The kit contains practical, easy-to-use information including a video and DVD featuring a young athlete disabled by concussion, a guide, wallet card and clip board sticker for coaches, posters, fact sheets for parents and athletes in English and Spanish, and a CD-ROM with additional concussion-related resources. To obtain a free kit, visit www.nabis.org.

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conferences 2006 FEBRUARY 12-16 – World Federation for NeuroRehabilitation (WFNR), 4th World Congress for Neurorehabilitation, Hong Kong. Contact: (852) 2559 9973, e-mail: info@ wcnr2006.com, web: www.wcnr2006.com.

MARCH 9-11 – 2nd Federal TBI Interagency Conference, Bethesda, MD. Contact: (973) 243-6812, e-mail: info@ tbi-interagency.org; www.tbi-interagency.org.

21-25 – Brain Injuries CE Conference, San Antonio, Texas. Contact: (800) 377-7707, www.contemporaryforums.com.

23-26 – Neuro-Optometric Rehabilitation Association, 15th Annual Multi-Disciplinary Conference, Tucson, AZ. Contact: (866) 222-3887, www.nora.cc.

25 – NY Academy of TBI, Concussive Brain Trauma: Neuroscience and Clinical Aspects, New York, NY. Contact: (212) 947-7111, ext. 328, www.nyacadtbi.org.

30 – Brain Injury Social Work Group (BISWG) and Child Brain Injury Trust (CBIT), South Yorkshire, United Kingdom. Contact: linda.eldred@irwinmitchell.com, www.biswg.co.uk.

APRIL 1-8 – 58th Annual Meeting of the American Academy of Neurology. San Diego, CA. Contact: membership@ aan.com, www.aan.com.

6-8 – 38th International Danube Symposium for Neurological Sciences and Continuing Education, Brno, Czech Republic. Contact: +(420) 543 141 111, www. ta-service.cz.

13-17 – CMSA’s 2006 Conference & Expo, Gaylord Texan Resort & Convention Center, Dallas/Ft. Worth, TX. Contact: (501) 225-2229, e-mail: cmsa@cmsa.org, web: www.cmsa.org.

27-29 – Australian Society for the Study of Brain Impairment, 29th Annual Brain Impairment Conference, Sydney, Australia. Contact: ndarc21@unsw.edu.au, www.assbi.com.

16-19 – Festival of International Conferences on Disability, Aging and Technology: Advances in Neurorehabilitation, Toronto, Ontario. Contact: e-mail: info@ abinetwork.ca, www.abinetwork.ca.

27-30 – AOTA’s 86th Annual Conference & Expo, Charlotte, NC. Contact: (301) 652-2682, www.aota.org.

MAY 3-6 – 4th International Symposium on Neuroprotection and Neurorepair: Cerebral Ischemia and Stroke, Magdeburg, Germany. Contact: www.neurorepair-2006.de.

5 - Long-term Planning for Individuals with Brain Injury and other Cognitive Disabilities Seminar, Texas Brain Injury Society, Austin, TX. Contact: (512) 371-1078, email: ll@tc-tx.com, www.txbis.org.

21-25 - 8th International Neurotrauma Symposium.

Rotterdam, The Netherlands. Status Plus Conferences. Contact: P.O. Box 97, 3950 AB Maarn, The Netherlands. Tel.+31 (0)343-443-888; e-mail: info@ints2006. org; www.ints2006.org.

JUNE 8-9 – 2006 Williamsburg Conference, Rehabilitation of the Adult and Child with Brain Injury: Practical Solutions to Real World Problems. Contact: (703) 4518881, web: www.neuro.pmr.vcu.edu.

SEPTEMBER 14-16 – NABIS Brain Injury Conference of the Americans at the Eden Roc Resort, Miami, FL. Contact: conference@nabis.org, web: www.nabis.org.

OCTOBER 25-28 – 26th Annual Conference of the National Academy of Neurophyschology, Marriott San Antonio Rivercenter, San Antonio, TX. Contact: (303) 691-3694, email: office@nanonline.org, web: www.nanonline.org.

NOVEMBER 3-5 – 4th Annual Pediatric Brain Injury Conference.

Miami, Florida. Sponsored by the University of Miami Miller School of Medicine. Visit: www.pedibrain.org.

5-6 – 26th Annual Neurorehabilitation Conference on TBI, Stroke and Other Disorders, Braintree, MA. Contact: (781) 348-2113, e-mail: donna.carr@healthsouth.com.

2007 JUNE 17-21 – International Brain Injury Association’s Seventh World Congress on Brain Injury, Jerusalem.

Contact: www.kenes.com/ibia07.

AGNEW&BRUSAVICH – LAWYERS Specialists In Representing Individuals With Acquired Brain And Spinal Cord Injuries Let Us Help Rebuild Your Life with Our Successful Team Approach •

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