BIAN Logo depicting a man, woman, and child Brain Injury Association of Nipissing [BIAN]


Brain Injury Resources
Internet & Books



The information on this page has been
reprinted with permission from the publisher:

Holland, D., & Shigaki, C.L. (1998)
Educating families and caretakers of traumatically brain injured
patients in the new health care environments:
a three phase model and bibliography.
Brain Injury, 12, 993-1009

Publishers: Taylor & Francis
http://www.taylorandfrancis.com/

View the full text of the article


Adult Brain Injury Internet & Book Resources

Helpful internet sources are:

1. BIAN: Brain Injury Association of Nipissing http://travel.to/brain
2. Ontario Brain Injury Association http://www.obia.on.ca/
3. The USA Brain Injury Association - http://www.biausa.org

Participation in a brain injury support group will provide an opportunity to learn more about brain injuries and recovery, suggestions on how to deal with deficits, and provide support. Additionally, more information about brain injuries can be found on the internet at:

http://www.braincenter.org
http://www.obia.on.ca/
http://www.biausa.org

Information and helpful tips about brain injury can be readily found on the internet. There are online discussion groups and support groups as well. BIAN operates a Brain Injury Discussion List at http://groups.yahoo.com/group/BIAN To subscribe send email to:

Written information can be obtained from the Ontario Brain Injury Association at (800) 263-5404.

A good book for family members to read is "Head Injury and the Family: A Life and Living Perspective" by Arthur E. Dell Orto, et al / Paperback / Published 1994 for $32.95 from www.amazon.com or available in North Bay for loan from Barbara Anello at dawnontario@sympatico.ca

We recommend that you receive education from your health care providers about the common effects of head injury.

Other books which may be helpful include:

  1. Head Injury and the Family (Dell Orto & Power, 1994, can be ordered through Amazon.com at
    (800) 201-7575.
  2. Working After a Head Injury (HDI Publishers 1-800-321-7037)


Resources

article: Information General Sobre: Lesion Cerebral (General Information Sheet: Brain Injury, by NICHCY) Brain Injury Association, Inc. (See below) One of few materials available in Spanish. (FREE).

book: Traumatic Head Injury: Cause, Consequence and Challenge Head Injury Association of KS & Greater Kansas City Inc. 1100 Pennsylvania, Suite 305 Kansas City, MO 64105 (816) 842-8607,1-800-783-1356 Contains glossary and descriptions of health care providers.

book: Brain Injury Glossary (Lehmkuhl, ed.)
HDI Publishers (See below) ($9.50) for printed format. Also available for Windows '95,
Windows 3.1 or IBM-formats. 850 entries,

booklet: Preguntas sobre lesion traumatica del cerebro (Basic Questions About Head Injury and
Disability, a "Tailored Information Packet")
Brain Injury Association, Inc.(See below)
One of few materials available in Spanish. ($2.00)

booklet: Dano cerebral: Guia para familiares y cuidadores (Jose Leon-Carrion)
Brain Injury Association, Inc. (See below)
One of few materials available in Spanish. ($12.50)

booklet: What is Anoxic Brain Injury- (David F. Long, 1990).
Brain Injury Association, Inc.
(See below) ($2.00)

booklet: About Head Injuries
Channing L. Bete Co., Inc.
200 State Rd.,
South Deerfield, MA 01373
1-800-628-7733
Covers basic information including identifying the members of the treatment team and how to
take care of yourself as a caregiver. Good for physicians' office/clinic distribution.

misc: Introductory Information for Families Brain Injury Association, Inc. (See below) A collection of readings. Basic information about TBI, guide for selecting rehabilitation facility, and information about the Brain Injury Association. ($7.00)

article: A survey of accredited and other rehabilitation facilities: Education, training, and cognitive rehabilitation in brain injury programs. Brain Injury, 7(4), 319-331. Also available through: The National Information Clearinghouse

article: Severe Brain Injury
(Adapted from "Coma: Its Treatment and Consequences")
Brain Injury Association, Inc.(See below)
This article is in hand out format and would be appropriate for use in clinic or hospital setting.

article Fact Sheets: Head Injury, Finding an Attorney, Conservatorships, Legal Planning for
Incapacity, Coping with Behavior, Problems After Head Injury,--plus others
Family Caregiver Alliance
425 Bush Street, Suite 500
San Francisco, CA 94108
(415) 434-3388
FAX: (415) 434-3508
E-mail: info@caregiver.org
Web: http://www.cargiver.org
Good information with resources and hotline numbers on the back. May be somewhat more
relevant for people who live in California.
Families may want to order separately:
up to 5 titles: $1.00
up to 6 titles, $2.00
Professions may want to order complete set with binder: $15.00
Many are available in alternate languages such as Chinese and Spanish.

article: Know Your Brain
National Institute of Neurological
Disorders and Stroke

National Institutes of Health
P.O. Box 5801
Bethesda, MD 20824
1-800-352-9424
FAX: (301) 402-2186
Basic information about the brain with simple drawings

article: Subarachnoid Hemorrhage and Aneurysm ("Learning" series, 1993). University Hospital & Clinics One Hospital Drive Columbia, MO 65212 (314) 882-4141 This publication includes easy to read, general information plus a glossary and schematic diagrams. This publications would be most appropriate for use with recently head injured patients.

audio: Neuropsychological Assessment: What it does and does not do. (Kay & Mateer)
Brain Injury Association, Inc. (See below)
($10.00)

book: Head Injury: A Family Matter (J. Williams and T. K., 1991)
Paul H. Brooks Publishers:
Can be ordered through a bookstore. ($30.00)

book: Coming Home: A Discharge Manual for Families of Persons with a Brain Injury
HDI Publishers
(See below) ($12.50)

book: Head Injury and the Family: A Life and Living Perspective (Arthur E. Dell Orto & Paul
W. Power, 1994).
PMD Publishers Group, Inc.
PO Box 4116
Winter Park, FL 32793
Also available through:
St. Lucie Press
100 E. Linton Blvd., Suite 403B
Delray Beach, FL 33483
(407) 274-9906
FAX:( 407) 274-9927
One of the best books written in this area. Easy to read, written with family, caregivers and
patients in mind. Includes exercises and vignettes. Winner of an award for Excellence in Medical
Communication.

book: Traumatic Brain Injury Rehabilitation Training Consortium Monoraph Series
Volume 2: Assistive Technology in Traumatic Brain Injury Vocational Rehabilitation

St. Lucie Press
100 E. Linton Blvd.
Suite 403B
Delray Beach, FL 33483
(407) 274-9906
FAX: (407) 274-9927
Assistive technology, under the ADA (Amercians with Disabilities Act), is that designed for and used by individuals with the intent of eliminating, ameliorating, or compensating for functional limitations. Coverage includes impaired functions that limit vocational outcome, behavior concerns in the workplace, maximizing a client's residual knowledge skills, use of computers and adapting work environments. ($19.95)

book: The Patient Guide to the Human Brain (1990)
Tim Peters and Company Inc
Gladstone, NJ 07934
(Distributed by Geigy)
A pictorial guide to the brain and brain diseases. This publication is good for use along with
professional explanation and guidance.

booklet: Substance Abuse Task Force White Paper (1988) Brain Injury Association, Inc. (See below) Review of the literature on substance abuse and head injury. Includes statistics, and treatment options, strategies and extensive bibliography ($7.50)

booklet: Individual Psychotherapy with the Brain Injured Adult (H. Carberry & B. Burd, 1986) Brain Injury Association, Inc. (See below) ($1.00)

booklet: Catastrophic Injury Cases: The Relationship of Traumatic Brain Injury and Spinal Cord Injury (J. A. Harp, J. S. Taylor & T. Elliott, 1989) Brain Injury Association, Inc. (See below) ($3.00)

booklet: Behavioral and Psychosocial Sequelae of Pediatric Head Injury (T. McGuire & M. Rothenberg, 1986) Brain Injury Association, Inc. (See below) ($3.50)

booklet: Application of Neuropsychological Test Results to Interdisciplinary Cognitive Rehabilitation with Head Injured Adults (R. Tankle, 1988) Brain Injury Association, Inc. (See below) ($2.00 )

booklet: Recovery and Cognitive Retraining after Craniocerebral Trauma (Prigatano, 1987) Brain Injury Association, Inc. (See below) ($3.00)

booklet: Mild Brain Injury: Damage and Outcome (Wayne Alves & John Jane, 1985) Brain Injury Association, Inc. (See below) ($3.00)

booklet: Adolescents with Closed Head Injuries: A Report of Initial Cognitive Deficits
(Elisa Slater & Susan Bassett, 1988) Brain Injury Association, Inc. (See below) ($2.50)

booklet: Spouses of Persons Who Are Brain Injured: Overlooked Victims (E. Ziegler, 1987)
Brain Injury Association, Inc. (See below) ($1.00)

booklet: Guide to Selecting and Monitoring head Injury Rehabilitation Services (M.S. Reitter,
1992) Brain Injury Association, Inc. (See below) ($2.00)

booklet: Introduction para los pacientes y sus familias, Los lesion oculta: Un trauma menor de la cabeza (The Unseen Injury: Minor Head Injury), (Thomas Kay, PhD) Brain Injury Association, Inc. (See below) One of few materials available in Spanish. ($1.00)

booklet: Trauma Cerebral Un folleto para familias(Head Injury: A Booklet for Families)
(Ruth & Terry Hutchinson and the Texas Head Injury Assn.) Brain Injury Association, Inc. (See below)
One of few materials available in Spanish. ($1.00)

booklet: Questions to Ask at a Post-Acute Rehabilitation Program
Family Caregiver Alliance
425 Bush Street, Suite 500
San Francisco, CA 94108
(415) 434-3388
FAX: (415) 434-3508
E-maill: info@caregiver.org
Web: http://www.cargiver.org
A guide for families and professionals caring for survivors of traumatic brain injuries. ($10.00)

Book: Stress Management Following Head Injury: Strategies for Families and Caregivers, by
Falconer, 1984: available through the Brain Injury Association, Inc. 1-800-444-6443

Book: Head Injury and the Family, by Dell Orto & Power, 1994: can be ordered through a local bookstore.

booklet: Head Injury: A Guide for families
HDI Publishers (See below)
Structured by problem with examples and practical coping strategies. ($9.50)

booklet: Family and brain injury selected bibliography (Kreutzer, 1990) Natl. Information Clearinghouse (See below) ($4.00)

booklet: Brain Injury and Alcohol (Robert L. Karol & Dorothy Halla-Poe, 1987) Thomas & Company, Inc. Minneapolis, MN Workbook designed to be used with a health care professional.

manual: Brain Injury: Survivor and Caregiver Education Manual
Aspen Publishers, Inc.
200 Orchard Ridge Drive
Gaithersburg, NM 20878
1-800-638-8437 (8:30-5:00 ET)
Loose pages designed to be copied for handouts. Has 30-day free review. Supplements will be
automatically sent and charged to you unless you notify Aspen in writing ($169.00)

manual: Family Articles about Traumatic Brain Injury, Therapy Skill Builders
Psychological Corporation
1-800-228-0752
(FAX: 1-800-232-1223)
Includes handouts and resource information. 79 articles. 90 day money back guarantee. ($89.00)

misc: Legal and Financial Issues for Families
Brain Injury Association, Inc. (See below)
Packet designed for families that explores some of the legal and financial issues faced after TBI.
($10.00)

pamphlet: Head Injury: "What do we do now-"
MO Dept. of Health
Division of Injury Prevention Head Injury Rehabilitation and Local Health Services

Traumatic Head Injury Program
P.O. Box 570
Jefferson Cit MO 65102-0570
1-800-451-0669
Head injury pilot project, contact information for a service coordinator.

video: The Unseen Injury: Minor Head Injury (1986) Brain Injury Association, Inc. (See below) Designed specifically for viewing by family members. Single copies of the professional and family brochures accompany the tape ($70.00 set). Additional brochures available.

video: Surviving Coma: The Journey Back (1987)
Brain Injury Association, Inc. (See below)
Documentary originally aired on PBS. This is a short version with less emphasis on euthanasia.
($95.00)

video: The Effect of Head Injury on the Family
Natl. Information Clearinghouse
(See below) 19 minutes. ($35.00)

video: Family Perspectives on Head Injuries
Natl. Information Clearinghouse
(See below) 19 minutes. ($35.00)

video: The Impact of Brain Injury on Relationships: Three Personal Stories
Natl. Information Clearinghouse
(See below) 20 minutes. ($35.00)

video: The Brain and Behavior
The Transitional Learning Community
1528 Postoffice Street
Galveston, TX 77550
1-800-TLC-GROW
Understanding the brain. Effects of head injury are discussed in terms of behavior. ($75 each,
$200 for set of 3). Extra workbooks are available for $5.00 each. Series sample tape is available
for $5.00

video: The Maze
The Transitional Learning Community
1528 Postoffice Street
Galveston, TX 77550
1-800-TLC-GROW Life after brain injury. Techniques for finding solutions to problems.
($75.00, $200.00 for set of 3). Extra workbooks are available for $5.00 each. Series sample
tape is available for $5.00.

video: Rehabilitation and You
The Transitional Learning Community
1528 Postoffice Street
Galveston, TX 77550
1-800-TLC-GROW
How to make rehabilitation work best for you. ($75.00, $200.00 for set of 3)
Extra workbooks are available for $5.00 each. Series sample tape is available for $5

article: Living With a Head Injury (Belinda Talbert, 1991) Cognitive Rehabilitation (January, 1991), special issue, pp 2-17. This is a well-written and detailed story as told by a TBI survivor. The author discusses her surprise regarding how much her head injury impacted her life and how much work and time was required to readjust.

article: Fact Sheets: Hiring In-home Help, How to Form a Support Group, Caregiving, Out-of- Home
Care Options, Advocacy Tips for Family, Caregivers, Work and Eldercare,
Assisted Living and Residential Care Facilities,--plus others
Family Caregiver Alliance. 425 Bush Street, Suite 500, San Francisco, CA
94108(415) 434-3388
FAX: (415) 434-3508
E-maill: info@caregiver.org
Web: http://www.cargiver.org
Good information with resources and hotlines on the back. May be somewhat more relevant for people who live in California.
Families may want to order separately:
up to 5 titles: $1.00
up to 6 titles, $2.00
Professions may want to order complete set with binder: $15.00
Many are available in Chinese and/or Spanish

article: Sex and the Brain-Injured Patient: Regaining Love, Pleasure, and Intimacy (L. Miller, 1994). The Journal of Cognitive Rehabilitation. May/June. This article is specific and covers many important areas. It is a good article for families and for therapists to read.

book: Profiles in Caregiving: The Unexpected Career (Carol Aneshensel et al., 1995)
Academic Press. 525 B St., Ste. 1900, San Diego, CA 92101-4495.
1-800-321-5068
A scholarly compendium of care giving with discussion of implications for public policy.
This may be less suitable and less interesting for lay audiences. ($39.95)

book: Vocational Rehabilitation for Persons with Traumatic Brain Injury. (Wehman and
Kreutzer eds., 1990). Aspen Publishers Inc., 1900 Research Blvd, Rockville, MD 20850
1-800-638-8437 This is an edited book for health care professionals. ($66.00)

book: The 1997 Brain Injury Association National Directory of Brain Injury Rehabilitation
Services. Brain Injury Association, Inc. (See below)
Desk reference for professionals listing brain injury rehabilitation programs and
individual service providers nationwide. 393 pages. ($45.00)

book: Planning for the Future: Providing a Meaningful Life for a child with a Disability after
Your Death. Brain Injury Association, Inc.
(See below) ($24.95)

book: An Educational Challenge: Meeting the Needs of Students with Brain Injury (Dana S. DeBoskey, Ph.D.) Brain Injury Association, Inc. (See below) ($14.50)

book: Sexuality and the Person with Traumatic Brain Injury (E.R. Griffith, S. Lemberg, 1992)Brain Injury Association, Inc. (See below) ($18.95)

book: Living With Head Injury: A Guide for Families (R. Senelick) Brain Injury Association, Inc. (See below) ($8.95)

book: National Directory of Head Injury Rehabilitation Services (1993) Brain Injury Association, Inc. (See below) ($40.00) C. Ryan, 1991)

book: Why Did it Happen on a School Day- My Family's Experience with Brain Injury (1995)Brain Injury Association, Inc. (See below) ($10.00)

book: Integrating Community Resources, HDI Publishers (See below) ($16.50)

book: The TBI Tool Kit, HDI Publishers (See below) ($24.95)

book: Working After Brain Injury, HDI Publishers (See below) ($12.50)

book: Respite Care: Principles, Programs and Policies (S. Cohen and R. Warren, 1989) PRO-ED Publishers This book is out of print but may be available at a library.

book: Teaching the Head Injured: What to Expect (1987) Tampa General Rehabilitation Center, The Tampa General Hospital, Tampa, FLOutline format of information to review with children and their teachers.

book: Parenting a Child with Traumatic Brain Injury (B.K. Hughes, 1990)
Charles C. Thomas Publishers, Springfield, IL. Can be ordered through a book store ($29.95)

booklet: Staying at Home;A Guide to Long-term Care and Housing (1996)
American Association of Retired Persons
601E Street, NW
Washington, DC 20049
Excellent publications with lists of important issues to consider and state/national

booklet: When Your Child Goes to School After an Injury (M. Lash, 1992) Brain Injury Association, Inc. (See below) ($7.50)

booklet: Susan's Dad: a Child's Story of Head Injury (L.E. Leaf, 1988) Brain Injury Association, Inc. (See below)

booklet: Hearing Loss Following Head Injury (1984) Brain Injury Association, Inc. (See below) ($1.00)

booklet: Neuropsychology of Attention and Memory (M.J. Nissen, 1986) Brain Injury Association, Inc. (See below) ($1.50)

booklet: From One Family Member to Another (E. Burke, 1984) Brain Injury Association, Inc. (See below)
A mother tells the story of her son's injury and recovery. Gives suggestions for structuring the home environment. ($ 1. 00)

booklet: Living with Chronic Pain (HDI Coping Series) Brain Injury Association, Inc. (See below) ($9.50)

booklet: When Your Child is Seriously Injured: The Emotional Impact on Families (M. Lash, 1990) Brain Injury Association, Inc. (See below) ($4.50)

booklet: Relationships Between Personality Disorders, Social Disturbances, and Physical Disability Following TBI (Muriel Lezak, 1987)

Brain Injury Association, Inc. (See below) ($3.00)

booklet: Educational Concerns for the Traumatically Head Injured High School and College Student (R.Savage, 1987).

Brain Injury Association, Inc. (See below) ($4.00)

booklet: Children with Disabilities: Understanding Sibling Issues (1988) Brain Injury Association, Inc. (See below) ($2.50)

booklet: Stress management Following Head Injury: Strategies for Families and Caregivers (J. Falconer, 1984) Brain Injury Association, Inc. (See below) ($1.00)

booklet: Post-traumatic Headaches: Subtypes and Behavioral Treatments (Thomas Bennett 1988) Brain Injury Association, Inc. (See below) ($3.00)

booklet: Counseling Head Injured Patients: Guidelines for Community Mental Health Workers (M. Blanchard, 1984) Brain Injury Association, Inc. (See below) ($4.00)

booklet: Brain Damage is a Family Affair (M. Lezak, 1988) Brain Injury Association, Inc. (See below) ($3.00)

booklet: Persisting Problems After Mild head Injury: A Review of the Syndrome (Lawrence Binder, 1986)
Brain Injury Association, Inc. (See below) ($5.00)

booklet: The Head Injury Survivor on Campus: Issues and Resources (M.R. Ozer, HEATH Resource Center, 1988) Brain Injury Association, Inc. (See below) ($42.00)

booklet: Resource List of Organizations (C. Jensen for the NHIF, 1990) Brain Injury Association, Inc. (See below)

List of organizations that assist persons with various special needs. ($4.00)


Post-concussive:

booklet: Hiring Persons with a Brain Injury: What to Expect
HDI Publishers (See below) ($9.50 each)

booklet: Brain Injury: A Home Based Cognitive Rehabilitation Program
HDI Publishers (See below) ($9.50 each)

booklet: Life After Brain Injury: Who am I- HDI Publishers (See below) A well-structured book. Discusses specific problems areas. Includes good examples and gives lists of practical coping strategies. ($9.50)

booklet: Teaching Persons With A Brain Injury What to Expect
HDI Publishers (See below) ($9.50 each)

booklet: Head Injury: Missouri Head Injury Guide for Survivors, Families and Caregivers Missouri Department of Health, Division of Injury Prevention, Head Injury Rehabilitation and Local Health Services, P.O. Box 570, Jefferson City, MO 65102. (573) 751-6246 0 q6'1 This booklet is very good, particularly about legal issues and insurance. For people who live in Missouri.

booklet: Respite Resource Guide National Council on the Aging
409 3rd St., S.W., Suite 200, Washington, DC 20024.
(202) 479-1200
Guide for professionals, includes information on the different types of programs
available. ($8.00 plus $2.00 shipping and handling)

booklet: How to Hire Helpers: A Guide for Elders and Their Families
Task Force on Aging
Church Council of Greater Seattle
4759 15th Street, NW., Seattle, WA 98105. (206) 525-1213

How to advertise and interview and hire home help. Requires prepay or purchase order.
1-9 copies $3.50 ea
10-24 copies $2.50 ea
25-99 copies $2.00 ea
100+ copies $1.50 ea

manual: Controlling Your Frustration: A Class for Caregivers
Family Caregiver Alliance. 425 Bush Street, Suite 500, San Francisco, CA 94108
(415) 434-3388
FAX: (415) 434-3508
E-maill: info@caregiver.org
Web: http://www.cargiver.org
Leader's manual ($15.00) & Participant's manual ($10.00)

misc: Life care planning forms
Brain Injury Association, Inc. (See below)
Come in sets of 17 forms to maintain records for all important issues in case management
and life care planning (I set-$5.00, 6 sets-$20.00, 12 sets-$35.00)

misc: My Medical History and Medicine Record, University Physicians
University Hospitals and Clinics. Rusk Rehabilitation Center. (352) 882-4997.
This is a pocket-sized, tri-fold card with medical record, doctors' phone numbers and
medications lists, for patients to carry with them. Similar record keepers may be
available through local hospitals and/or clinics.

pamphlet: Resources for Families and Caregivers of Brain-Impaired Adults
Family Caregiver Alliance. 425 Bush Street, Suite 500, San Francisco, CA 94108
(415) 434-3388
FAX: (415) 434-3508
E-maill: info@caregiver.org
Web: http://www.cargiver.org

pamphlet: How to Choose a Home Care Agency
Homecare - The National Association for Home Care
228 Seventh Street, SE.,Washington, DC 20003-4306.
(202) 547-7424
Gives a good short description of types of home care and questions to review when hiring
home care help.

video: A Fate Better than Death (1981) Brain Injury Association, Inc. (See below)
Video features 4 young adults with traumatic brain injury. Focuses on support groups.
($70.00)

video: "When Billy Broke his Head ... and Other Tales of Wonder" Independent Television
Service: 190 E. 5th Street, St. Paul, MN 612/225-9035.
Order from: Fanlight Productions, 47 Halifax St., Boston Mass 02130. 1-800-937-4113
From the perspective of an actual head-injured patient. Billy tells a story of rehabilitation
and employment after MVA. "Realistic" with a "less than flattering view of Division of
Vocational Rehabilitation" ($245.00. Can be rented for $50.00-$100, depending on time
frame)

video: Returning to School Following Traumatic Brain Injury: A Guide for School Personnel
Natl. Information Clearinghouse (See below) 60 minutes ($45.00)

video: Ethical Issues for Families of TBI Persons
Natl. Information Clearinghouse
(See below) 16 minutes. ($35.00)

Brain Injury Association, Inc.
(formerly the National Head Injury Foundation)
105 North Alfred St.
Alexandria, VA 22314
703-236-6000(v)
703-236-6001(f)
800-444-6443 (Family Help Line)

HDI Publishers
10600 NW Freeway, Suite 202
P.O. Box 131401
Houston, TX 77219
1-800-321-7037
FAX: (713) 956-2288

National Information Clearinghouse
Rehabilitation Psychology and Neuropsychology Service
Department of Physical Medicine and Rehabilitation
P.O. Box 980542
Richmond, VA 23298-0542
(804) 828-9055


Pediatric TBI Internet & Book Resources:

Two helpful internet sources are:

1. Ontario Brain Injury Association http://www.obia.on.ca/
2. The USA Brain Injury Association - http://www.biausa.org

Participation in a brain injury support group will provide an opportunity to learn more about brain injuries and recovery, suggestions on how to deal with deficits, and provide support. Additionally, more information about brain injuries can be found on the internet at:

Ontario Brain Injury Association http://www.obia.on.ca/
The USA Brain Injury Association - http://www.biausa.org

Resources:

1 . Head Injury and the Family (Dell Orto & Power, 1994, can be ordered through Amazon.com (800) 201-7575.

2. Working After a Head Injury (HDI Publishers 1-800-321-7037)

misc: Introductory Information for Families Brain Injury Association, Inc. (See below) A collection of readings. Basic information about TBI, guide for selecting rehabilitation facility, and information about the Brain Injury Association. ($7.00)

book: Head Injury: A Family Matter (J. Williams and T. K., 1991)
Paul H. Brooks Publishers:
Can be ordered through a bookstore. ($30.00)

book: Coming Home: A Discharge Manual for Families of Persons with a Brain In* jury

HDI Publishers
(See below) ($12.50)

book: Head Injury and the Family: A Life and Living Perspective (Arthur E. Dell Orto & Paul
W. Power, 1994).
PMD Publishers Group, Inc.
PO Box 4116
Winter Park, FL 32793
Also available through:
St. Lucie Press
100 E. Linton Blvd., Suite 403B
Delray Beach, FL 33483
(407) 274-9906
FAX:( 407) 274-9927
One of the best books written in this area. Easy to read, written with family, caregivers and
patients in mind. Includes exercises and vignettes. Winner of an award for Excellence in Medical
Communication.

booklet: Behavioral and Psychosocial Sequelae of Pediatric Head Injury (T. McGuire & M.
Rothenberg, 1986)
Brain Injury Association, Inc. (See below) ($3.50)

manual: Family Articles about Traumatic Brain Injury, Therapy Skill Builders
Psychological Corporation
1-800-228-0752
(FAX: 1-800-232-1223)
Includes handouts and resource information. 79 articles. 90 day money back guarantee. ($89.00)

book: Planning for the Future: Providing a Meaningful Life for a child with a Disability after Your Death. Brain Injury Association, Inc. (See below) ($24.95)

book: An Educational Challenge: Meeting the Needs of Students with Brain Injury, (Dana S. DeBoskey, Ph.D.) Brain Injury Association, Inc. (See below) ($14.50)

book: Why Did it Happen on a School Day- My Family's Experience with Brain Injury, (1995)Brain Injury Association, Inc. (See below) ($10.00)

book: Integrating Community Resources, HDI Publishers (See below) ($16.50)

book: Parenting a Child with Traumatic Brain Injury (B.K. Hughes, 1990) Charles C. Thomas Publishers, Springfield, IL. Can be ordered through a book store ($29.95)

booklet: When Your Child Goes to School After an Injury (M. Lash, 1992) Brain Injury Association, Inc. (See below) ($7.50)

booklet: Susan's Dad: a Child's Story of Head Injury (L.E. Leaf, 1988)
Brain Injury Association, Inc. (See below)

booklet: From One Family Member to Another (E. Burke, 1984)
Brain Injury Association, Inc. (See below)
A mother tells the story of her son's injury and recovery. Gives suggestions for
structuring the home environment. ($1.00)

booklet: When Your Child is Seriously Injured: The Emotional Impact on Families (M. Lash,
1990) Brain Injury Association, Inc. (See below) ($4.50)

booklet: Educational Concerns for the Traumatically Head Injured High School and College, Student (R.Savage, 1987). Brain Injury Association, Inc. (See below) ($4.00)

booklet: Children with Disabilities: Understanding Sibling Issues
(1988) Brain Injury Association, Inc. (See below) ($2.50)

booklet: Stress management Following Head Injury: Strategies for Families and Caregivers
(J. Falconer, 1984) Brain Injury Association, Inc, (See below) ($1.00)

booklet: Brain Damage is a Family Affair (M. Lezak, 1988)
Brain Injury Association, Inc. (See below) ($3.00)

booklet: The Head Injury Survivor on Campus: Issues and Resources
(M.R. Ozer, HEATH Resource Center, 1988)
Brain Injury Association, Inc. (See below) ($42.00)

booklet: Resource List of Organizations (C. Jensen for the NHIF, 1990)
Brain Injury Association, Inc. (See below)
List of organizations that assist persons with various special needs. ($4.00)

booklet: Brain Injury: A Home Based Cognitive Rehabilitation Program
HDI Publishers (See below) ($9.50 each)

video: Returning to School Following Traumatic Brain Injury: A Guide for School Personnel
Natl. Information Clearinghouse (See below) 60 minutes ($45.00)

Brain Injury Association of America
(formerly Brain Injury Association, Inc.)
8201 Greensboro Drive, Suite 611
McLean, VA 22102
703-761-0750 (v)
703-761-0766 (f)
800-444-6443 (National Brain Injury Information Center)

HDI Publishers
10600 NW Freeway, Suite 202
P.O. Box 131401
Houston, TX 77219
1-800-321-7037
FAX: (713) 956-2288

National Information Clearinghouse
Rehabilitation Psychology and Neuropsychology Service
Department of Physical Medicine and Rehabilitation
P.O. Box 980542
Richmond, VA 23298-0542
(804) 828-9055


Dementia Internet , Book Resources

Alzheimer's:

Although the diagnosis of Alzheimer's disease is tentative, considerable useful information about and resources cognitive decline can be found at the website: http://www.alzheimers.com

Be sure to browse the "tips for caregivers" and the "caregiver's bill of rights" as well as
numerous book reviews geared toward helping the family.

Frontal Lobe Dementia Fact Sheet:
http://intra.ninds.nih.gov/mnb/cns/FLD_Fact_Sheet.html_Fact_Sheet.html

http://www.alzheimers.org/adear , Alzheimer's Disease Education and Referral Center

http://www.aiz.org , Alzheimer's Association Home Page


Alzheimer's disease and dementia resources:

Coping With Alzheimer's: A Caregiver's Emotional Survival Guide
Rose Oliver, Frances A. Bock / Paperback / Published 1989

Coping With Caring: Daily Reflection for Alzheimer's Caregivers
Lyn Roche / Paperback / Published 1996

book: The 36-hour Day (Nancy Mace & Peter Rabins). The Johns Hopkins University Press: Baltimore. 1-800-272-3900 Updated and expanded; this book gives practical, compassionate information for caregivers of people with Alzheimer's disease. Includes helpful vignettes from the patients point of view. Includes extensive list of resources in the back. Available in bookstores (can be ordered if not stocked) and through the Alzheimer's Association. ($12.00 softcover).

book: Show Me the Way to Go Home. (Larry Rose, 1996). Elderbooks. P.O. Box 490
Forest Knolls, CA 94933. 1-800-909-COPE First person account of life with Alzheimer's
disease. Good for others with memory disorders. Can be ordered through bookstores.
($11.00)

book: Will I Be Next- The Terror of Living with Alzheimer's Disease. (Lois Bristow, 1996) Hope Warren Press P.O. Box 204 Acampo, CA 95220. (209) 368-3662. The author is activist and has several family members with Alzheimer's. ($12.00 plus $3.00 shipping)

booklet: Time to Decide: Information about Health-Care Decisions for Aging Adults and their Families Task Force on Aging. Church Council of Greater Seattle. 4759 15th Street, NW Seattle, WA 98105. (206) 525-1213 30-page booklet, written by a team of health-care, social work, and legal professionals. Requires prepay or purchase order. 1-9 copies $5.00 10-49 copies $4.00. 50+ copies $3.00

booklet: Reclaiming Time: Caregiver Relief and Renewal Church Council of Greater Seattle 4759 15th Street, NW Seattle, WA 98105. (206) 525-1213 A practical guide for family caregivers of older adults. Includes information on respite, organizing caregiver tasks, and financial considerations. Requires prepay or purchase order. 1-9 copies $5.00. 10-49 copies $4.00. 50+ copies $3.00.

Aronson, M.K. (Ed.). Understanding, Alzheimer's Disease. NY. Scribners,1988.

Dippel, R.L. & Hutton, J.T. Carinp for the Alzheimer Patient, 2nd ed. Buffalo, NY.Prometheus Books, 1991.

Gwvther, L.P. Care of Alzheimer's Patients: A Manual for Nursing Home Staff. Washington, D.C.: American Health Care Assoc. & ADRDA, 1985.

Mace, N.L. Dementia Care. Baltimore, MD: The Johns Hopkins University Press, 1990.

Mace, N.L, & Rabins, P.V. The 36 Hour Dav. Baltimore, MD: The Johns Hopkins University Press, 198 1.

Powell, L.S. & Courtice, K. Alzheimer's Disease. Reading, MA-- Addison-Wesley, 1983.

Rob, C. & Reynolds, J. The Carepiver's Guide. Boston, MA: Houghton Mifflin, 1991.

Zgola, J.M. Doing Thinps. Baltimore, MD: The Johns Hopkins University Press, 1987.


Stroke/CVA Internet & Book Resources

American Heart Association National Organization (I - 8 00-AHA-US Al)
(Columbia: 573-446-3000/ 1-800-323-7883)
(St. Joseph: 816-233-5864)
(Cape Girardeau: 314-335-3240)
(St. Louis: 314-367-3383)
(Kansas City/Overland Park: 913-648-6727)


For more information on strokes and related brain damage the following resources are recommended:

Internet: htip://www. stroke.org/
http://members.aol.com/scnlmlm/main.htm

Cardiovascular Reactivily to Psychological Stress & Disease
Judith Blascovich, Edward S. Katkin / Paperback / Published 1993

Heart-Aches : Heart Disease and the Psychology of the Broken Heart
Rudiger Dahike, Rudiger Daklke / Paperback / Published 1996

Books: A guide to helping Elderly Relatives Near and Far $14.95
Family Caregivers Guide $6.00

National Organizations: (National Stroke Association, 1-800-STROKES)

* should be referred to the National Heart Association (1-800-STROKES) to obtain information regarding strokes, difficulties individuals with CVAs experiences, and appropriate resources available to them in their community.

article: Rehabilitation Guidelines and Resources; Home and Work Adaptations
National Stroke Association
300 East Hampden Ave.
Suite 240
Englewood CO 80110-2654
FAX (303) 762-1190
1-800-STROKES. These are sets of articles ($1.00-1.50)

audiotape: Jacquelyn Mayer Townsend
NSA Audio Tape Series. National Stroke Association, 300 East Hampden Ave., Suite 240,
Englewood CO 80110-2654.
FAX 303/762-1190
1-800-STROKES. Former Miss America (1963) shares her motivational story. ($10.00)

book: A Guide to Helping Elderly Relatives Near and Far National Stroke Association 300 East Hampden Ave. Suite 240, Englewood CO 80110-2654 FAX (303) 762-1190 1-800-STROKES ($14.95).

book: Disability Workbook for Social Security Applicants
National Stroke Association, 300 East Hampden Ave., Suite 240, Englewood CO 80110- 2654
FAX (303) 762-1190
1-800-STROKES ($14.95)

book: Family Caregivers Guide
National Stroke Association, 300 East Hampden Ave. Suite 240, Englewood CO 80110- 2654.
FAX (303) 762-1190
1-800-STROKES ($6.00)

book: We Will Do it Together. (C.P. Scoboria & Gloria Scoboria). c/o Gloria Scoboria 519 Laurel Rd. West, Nokomis, FL 34275. Articles and advice written by stroke survivor.

booklet: The One-Handed Way. American Heart Association, 1-800-611-6083
Practical advice on how to do things with one-hand ($2.50)

booklet: The Language of Stroke. American Heart Association, 1-800-611-6083
Defines medical terminology for stroke survivors. ($4.00)

booklets: American Heart Association. 1-800-611-6083

* How stroke affects Behavior
* Sex after Stroke
* Caring for a person with Aphasia
These are longer pamphlets with important and explicit information. "Aphasia" has awallet

sized card enclosed that an aphasic person can carry with them. "Sex" includes fairly explicit

drawings. ($5.50-12.00 per 25)

manual: Stroke Rehabilitation
Patient Education Manual. Aspen Publishers, PO Box 990, Frederick, MD 21705-9727.
1-800-638-8437
This manual has pages of information, checklists, resources etc. which are designed to be
copied and given to patients and families. Annual updates available at extra cost.
($159.00)

misc: Guidelines for Organizing Stroke Clubs
American Heart Association- Stroke Connection, 7272 Greenville Avenue, Dallas, TX 75231
1-800-553-6321. Information on how to organize and promote a stroke club.
($5.76 non-member price)

misc: "Stroke Connection"
American Heart Association- Stroke Connection, 7272 Greenville Avenue, Dallas, TX 75231
1-800-553-6321
American Heart Association hotline for support, literature, groups and other
resources/information.

misc: A Stroke of Luck

American Heart Association- Stroke Connection, 7272 Greenville Avenue, Dallas, TX 75231
E-maill: strokaha@amhrt.org

1-800-553-6321. Volunteer-reviewed newsletter for survivors and caregivers. Readers write
articles. Includes information, support and resources.

misc: Stroke Outreach Program

American Heart Association- Stroke Connection, 7272 Greenville Avenue, Dallas, TX 75231
1-800-553-6321. Peer counseling program that matches trained survivors and caregivers with people who have had strokes and their families. Includes program development and implementation guidelines, training materials and lesson plans, handouts (designed to be copied)
and list of resources. (Non-member price $16.62). This program is currently being redesigned. Call for details on availability.

misc: Common Threads Pen Friends
American Heart Association- Stroke Connection. 7272 Greenville Avenue, Dallas, TX 75231
1-800-553-6321

Pen-pal stroke survivor contacts; part of American Heart Association "Stroke Connection."

pamphlet: Recovering from a Stroke
American Heart Association. 1-800-611-6083.
Written for lay readers, patient and family. Designed for physician office distribution

pamphlet: Oral Exercises for Stroke Survivors
National Stroke Association. 300 East Hampden Ave., Suite 240, Englewood CO 80110-2654
FAX (303) 762-1190
1-800-STROKES. Designed for therapist/physician distribution. Patient-oriented with
drawings. ($1.50 each)

pamphlets: -Brain Attack: The Family's Role in Caregiving -What you Should Know About Stroke -Dangerous Duo (smoking) -Heart Attack and Stroke American Heart Association. 1-800-611-6083. Written for lay readers, patient and family. Designed for physician office distribution.


Prevention-oriented pamphlets:

* Adaptive Resources Guide

* Swallowing Problems
National Stroke Association, 300 East Hampden Ave., Suite 240, Englewood CO 80110-2654.
FAX (303) 762-1190.1-800-STROKES
"Resources" includes manufacturers guide to equipment, clothing, books, tapes, etc. Single
copies are free. Bulk rate $.50 each

videos: * You're Not Alone
* A Gift of Caring
American Heart Association. 1-800-611-6083.
"You're Not Alone" discusses stroke and recovery for lay audiences.
"A Gift of Caring" discusses the role of caregivers. ($10.00 each)

video: Home Care of Stroke Survivors, Aspen Publishers Order form PO Box 990. Frederick, NM 21705-9727. 1-800-638-8437. 2-parts, for lay education. ($149)

video: A Stroke Survivor's Workout video
Amercian Heart Association-Stroke Connection,
7272 Greenville Ave, Dallas, Texas 75231-4596
1-800-553-6321 Colour, 28.5 minutes
Presents flexibility and strengthering exercises. May be performed from a chair or wheelchair ($6.00)

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