Stroke: A NARIC Resource Guide for Stroke Survivors and Their
Families


Introduction to Stroke Resources
   This guide contains information stroke survivors, their
families, and friends can use to adjust to life after stroke.
Included is information about national organizations who offer
printed materials for stroke education and coping, as well as
those sponsoring "stroke clubs." Also in this guide is
information about documents from the NARIC collection that inform
and offer advice on stroke, caregiving, and other topics.
Criteria for selecting resources were that they be useful to
people who do not have medical backgrounds, and that the
documents listed be available to interested readers.


National Resources
   The information described below comes in several forms,
through phone conversations, brochures, booklets, and sometimes
videos. Some resources can also connect you with other stroke
survivors and their families. For your convenience, most listings
include a phone number. In some cases you will be routed when you
call; you may be put on hold, and you may have to explain what
you want more than once. Please be patient and persistent. All
hours listed are for Monday to Friday, but several of the
organizations have answering machines for the hours they are not
in operation. 

Courage Stroke Network. Courage Center, 3915 Golden Valley Road,
Golden Valley, MN 55422. 800/553-6321; fax: 612/520-0577. Hours:
7:30 A.M. to 4:30 P.M. central time.
     An information clearinghouse that receives stroke
publications from over 800 stroke groups and clubs, several of
which are listed below; a good source of consumer-oriented stroke
information. They publish the newsletter Stroke Connection, and
for people with aphasia, the booklet A Stroke of Luck.

National Stroke Association. 300 East Hampden Avenue, Suite 240,
Englewood, CO 80110-2654. 800/STROKES (800/787-6537);
303/762-9922; fax: 303/762-1190. Hours: 8 A.M. to 4 P.M. mountain
time.
   This organization provides a wide variety of publications and
offers guidance to people interested in forming stroke clubs and
support groups.  A few of the publications available include Be
Stroke Smart, a  quarterly newsletter; the brochures Stroke: What
It Is, What Causes It; Proper Diet After Stroke; and What Every
Family Should Know About Stroke; and the book The Road Ahead: A
Stroke Recovery Guide. A full list of publications is available
on request from NSA.

The American Heart Association. 7320 Greenville Avenue, Dallas,
TX 75231. 214/706-1179; fax: 214/706-1341. Hours: 8:30 A.M. to 5
P.M. central time.    This organization sponsors public education
programs, funds research, and distributes free public education
materials. Local chapters sponsor stroke clubs. Publications
include: Recovering From Stroke; Facts About Stroke; Strokes: A
Guide for the Family, and How Stroke Affects Behavior. A complete
list of publications is available from local chapters, found in
the telephone directory, or from the Inquiries Department at the
national headquarters in Dallas. 

The National Institute of Neurological Disorders and Stroke
(NINDS). Office of Information and Scientific Health Reports.
Building 31, Room 8A-16, Bethesda, MD 20892. 800/352-9424;
301/496-5751; fax: 301/402-2186. Contact Person: Norman Oliver,
Information Specialist. Hours: 9 A.M. to 4:30 P.M. eastern time.
   This office, part of the National Institutes of Health,
provides booklets written for nonprofessionals about various
neurological disorders, including Stroke: Hope Through Research,
listings of stroke research centers around the United States, and
current research findings in stroke.

The American Physical Therapy Association. 1111 North Fairfax
Street, Alexandria, VA 22314. 800/999-2782, extension 3212.
Hours: 9 A.M. to 5 P.M. eastern time.    Physical therapists help
people recover from injuries by exercise, water therapy, and
other activities designed to strengthen muscles and improve
coordination. APTA can provide the names of local physical
therapists through the requestor's state physical therapy
association. Publications available include a stroke resource
guide, a free bibliography on stroke, and a free list of stroke
rehabilitation facilities.

The National Easter Seal Society. 70 East Lake Street, Chicago,
IL 60601. 312/726-6200 or 800/221-6827. Hours: 9 A.M. to 5 P.M.
central time.
   This is the lead office of many Easter Seal offices around the
United States. Resources vary among local affiliates; the office
in your area may or may not have a stroke club. By contacting the
Affiliate Services Department at the national office, you can
receive the telephone number and address of the affiliate near
you. Also available from the Publications Department is a fact
sheet entitled Understanding Stroke. 

National Aphasia Association. Post Office Box 1887, Murray Hill
Station, New York, NY 10156-0611. At this time requests by mail
are preferred to phone calls.    NAA provides information on
aphasia through a newsletter, fact sheets, and bibliographies.
The newsletter lists the names and addresses of NAA Regional
Representatives who can provide information about local aphasia
support groups. 

American Speech, Language and Hearing Association. 10801
Rockville Pike, Rockville, MD 20852. Contact: Department of
Consumer Information. 800/638-8255; 301/897-5700. Hours: 8:30
A.M. to 4:30 P.M. eastern time. 
   Provides information on speech and language disorders,
including aphasia, and can refer callers to speech pathologists
and other related organizations. 

The Well Spouse Foundation. Post Office Box 28876, San Diego, CA
92198-0876. 619/673-9043. Hours: 10 A.M. to 5 P.M. pacific time.
Also: 914/357-8513. 10 A.M. to 5 P.M. eastern time.
   An organization that provides support for the husbands and
wives of people who are chronically ill. They provide advocacy
and publish the WSF Newsletter (quarterly), as well as the WSF
Bulletin. There are around 50 Well Spouse regional support groups
nationwide, and a pen pal system for people
geographically distant from other members. 

Family Survival Project. 425 Bush Street, Suite 500, San
Francisco, CA 94108. 415/434-3388. Hours: 9 A.M. to 5 P.M.
pacific time.
   They provide direct services (including legal and financial
consulting) to families in California, and distribute information
nationally about how people can care for family members with
neurological disabilities, including stroke. Other services
include a speaker's bureau and technical assistance in
establishing support groups. Publications include workshop
materials, fact sheets, research reports, directories, and
training manuals. A publications list is available upon request.


Documents on Stroke
   The NARIC library currently contains about 900 documents
pertaining to stroke. The following stroke-related documents have
been singled out as being good starting points for stroke
survivors and their families. Also included are documents on
adaptive devices and caregiving. 
Copyright law prevents us from photocopying these documents; you
may be able to find them in a local library, or the local library
may be able to get them through the inter-library loan program.
Purchasing information has been provided as well; many of the
books are available by special order from book stores--others are
available only from the publisher.

The Road Ahead: A Stroke Recovery Guide: First Edition.
Author/publisher: National Stroke Association, Denver, CO, 1986.
165 p. Available from NSA, 300 East Hampden Avenue, Suite 240,
Englewood, CO 80110-2654. 800/787-6537; 303/762-9922. $16.50.
   This document discusses hospital and home care as well as
alternative non-institutional care, adaptations required for home
care, grief, changing relationships, sexuality, goal setting and
problem solving, problems of perception (agnosia, apraxia, body
scheme, one-sided neglect, figure-ground impairment, hemianopsia,
spatial relationship disturbance), and communication (dysarthria,
verbal apraxo, pragmatic deficit, aphasia). Covers topics related
to independent eating and dressing, personal hygiene, mobility
nutritional concerns, skin and eye care, dental care, maintenance
of bladder and bowel function, positioning, transferring, and
exercising. 

Adaptive Resources: A Guide to Products and Manufacturers.
National Stroke Association, 1992. 32 p. Available from NSA, 300
East Hampden Avenue, Suite 240, Englewood, CO 80110-2654.
800/787-6537); 303/762-9922. Free.
   A short resource guide containing the names and addresses of
producers of adaptive equipment, clothing, and other products.
Both "high-tech" and "low-tech" products are included.

Learning and Living After Your Stroke. Author/publisher:
Harmarville Rehabilitation Center, Pittsburg, PA. 1983. 139 p.
Available from Harmarville Rehabilitation Center, P.O. Box 11460,
Pittsburg, PA 15238. $17.
   Presents information on the effects of stroke, management of
physical needs, methods of coping, and resources to assist in
leading a satisfying life. Provides an exercise program including
passive range of motion, walking techniques, bowel and bladder
management routines, skin care, medication routines, nutritional
care, complications, and daily living activities. Suggests ways
the family can cope with communication, perceptual and learning
problems; suggests community living activities; discusses the
return to work, driving, recreational activities, and
organizations; describes adaptive equipment for daily living
tasks and recreation; and lists community resources, national
organizations, activity schedules, and pertinent reading
material. Includes many photographs and a glossary. 

Stroke Family Guide and Resource. Bray, G. P., Clark, G. S., eds.
Springfield, IL: Charles C. Thomas, 1984. 191 p. Available from
Charles C. Thomas Books, 2600 South First Street, Springfield, IL
62794-9265. $22.75, plus $3 shipping and handling.
   Guide designed for the family of the stroke patient as an
adjunct to discussions with the medical treatment team. Discusses
the causes and consequences of stroke, intellectual and emotional
aspects, self-care, mobility, communication disorders, family
adjustment, sexuality, community resources, nutrition,
maintenance of bodily functions, and prevention of complications.
Defines technical terms. Includes drawings, photographs, and
index.

A Stroke Manual for Families: Actions and Reactions. Tampa
General Rehabilitation Center. Houston, TX: HDI Publishers. 54 p.
Available from HDI: 800/321-7037. $9.50. 
     Discusses problems faced by stroke survivors and their
families, including irritability, frustration, hostility, social
withdrawal, and changes in sexual behavior. Prepared by the staff
of a rehabilitation center.

Eighty-Eight Easy-To-Make Aids for Older People and for Special
Needs. Caston, D. Point Roberts, WA: Hartley and Marks, Inc.,
1988. 179 p. Available by request from bookstores, or directly
from Hartley and Marks, 206/945-2017. $12.95, plus $2 shipping
and handling.
   A woodworking project guide, for devices designed to assist in
daily living. The introduction discusses basic carpentry, i.e.,
types and purchasing of materials, tools, and construction
methods. The book describes how to make 88 different aids,
divided up into those useful in the kitchen, dining room/living
room, bedroom, bathroom, entry-ways, stairs/landing, outside the
house, and in the garden. There is also a section on carts and
walkers for moving from place to place. Where appropriate the
description of each device includes a materials shopping list,
instructions, and drawings. An appendix discusses handrails and
grab bars for bathrooms.

Meeting the Challenge of Disability or Chronic Illness: A Family
Guide. Goldfarb, L. A., et al. Baltimore, MD: Paul H. Brookes,
1986. 225 p. Available by request from bookstores, or directly
from Brookes Publishing, 800/638-3775 (orders only). $21. 
   Discusses the impact of disability and illness on families and
how to help families meet the challenge. Focuses on problem
solving by taking stock of family values and resources, and
presents a step-by-step problem-solving process. Includes
resources, references, and exercises.

The Care Giver's Guide: Helping Elderly Relatives Cope with
Health and Safety Problems. Rob, C., Reynolds, J. Boston:
Houghton Mifflin Company, 1991. 458 p. Available by request from
bookstores, or directly from Houghton Mifflin, 800/225-3362.
$12.95.
   A guide on how people can manage the care of aging people from
the home environment. Contains information on the difference
between normal memory loss and serious disease, adapting to
vision and hearing losses, medical treatments for chronic
disorders, and advice on recognizing medical problems and
handling medical emergencies. Includes tips on care giving for
the older person who is ill and temporarily must stay in bed. The
final sections of the book discuss information resources that can
provide assistance and insight for making decisions. Written by a
registered nurse who is also a medical journalist, and a nurse
practitioner who runs a geriatric clinic.

Helping Head Injury and Stroke Patients at Home: A Handbook for
Families. Pi Lamba Theta National Honor and Professional
Association in Education, San Jose Area Chapter. 1983. Available
from Mary Ellen Dierks, 5266 Cribari Heights, San Jose, CA 95135.
$20, CA residents add $1.65 sales tax.
   This self-help handbook gives stroke survivors and their
families specific examples of cognitive skills which have been
impaired by stroke, and a description of retraining for cognitive
skill improvement. Skills discussed include: memory, visual-
spatial, language-communication, slow response, judgment-
reasoning, planning-follow-through, rights, and do's and don'ts.
Includes bibliography, glossary, suggested progress chart, and
two resource sections.


 
ABOUT THIS DOCUMENT 
   This document is available in two forms: as a text file, 
from online sources (this document) and as a printed document 
available from NARIC (formatted with a desktop publishing
program).  
   Those interested in distributing the *Guide* in printed form
are  encouraged to contact NARIC at the above address, and we
will arrange to send  you a limited number of copies free of
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   This document is in the public domain. You are free to upload
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unaltered. If you use this information in new publications, 
please verify prices and document availability. NARIC guides 
are generally updated occasionally, so you may 
wish to contact NARIC to receive the latest copy. This guide 
is part of a series of resource guides produced by NARIC.     
   The National Rehabilitation Information Center invites your
comments and recommendations on this resource guide; corrections,
information about publications and resource information that is
not included here, and other suggestions are welcome.
   Please address your remarks to NARIC, 8455 Colesville Road, Suite
935, Silver Spring, MD 20910-3319. NARIC's phone numbers: 800/34-
NARIC (800/346-2742), or in Maryland, 301/588-9284 (both are
voice/TDD); Our fax number is 301/587-1967.

Date of print document release: February 1992
Date of electronic document release: March 1992
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