Many kinds of help are available for people who have
had strokes and their families and caregivers. Some
of the most important are:
Information about stroke. A good place to start is with the books and
pamphlets available from national organizations
that provide information on this subject. Many of
their materials are available free of charge. A
list of these organizations starts on page 30.
Local stroke clubs or other support groups. These are groups where stroke survivors and
family members can share their experiences, help
each other solve problems, and expand their social
lives.
Home health services. These are available from the Visiting Nurses
Association (VNA), public health departments, hospital
home care departments, and private home health agencies.
Services may include nursing care, rehabilitation
therapies, personal care (for example, help with
bathing or dressing), respite care (staying with
the stroke survivor so that the caregiver can take
a vacation or short break), homemaker services,
and other kinds of help.
Meals on Wheels. Hot meals are delivered to the homes of people
who cannot easily shop and cook.
Adult day care. People who cannot be completely independent
sometimes spend the day at an adult day care center.
There they get meals, participate in social activities,
and may also get some health care and rehabilitation
services.
Friendly Visitor (or other companion services). A paid or volunteer companion makes regular
visits or phone calls to a person with disabilities.
Transportation services. Most public transportation systems have buses
that a person in a wheelchair can board. Some organizations
and communities provide vans to take wheelchair
users and others on errands such as shopping or
doctor's visits.
Many communities have service organizations that can
help. Some free services may be available or fees may
be on a "sliding scale" based on income. It
takes some work to find out what services and payment
arrangements are available. A good way to start is to
ask the social workers in the hospital or rehabilitation
program where the stroke survivor was treated. Also,
talk to the local United Way or places of worship. Another
good place to look is the Yellow Pages of the telephone
book, under "Health Services," "Home
Health Care," "Senior Citizen Services,"
or "Social Service Organizations." Just asking
friends may turn up useful information. The more you
ask, the more you will learn.
ACTION 1100 Vermont Avenue, NW
Washington, DC 20525
(202) 606-4855 (call for telephone number of regional
office)
Sponsors older American volunteer programs.
Administration on Aging 330 Independence Avenue, SW
Washington, DC 20201
Toll-free (800) 677-1116
(call for list of community services for older Americans
in your area)
AHA Stroke Connection (formerly the Courage
Stroke Network)
American Heart Association 7272 Greenville Avenue
Dallas, TX 75231
Toll-free (800) 553-6321 (or check telephone book
for local AHA office) Provides prevention, diagnosis,
treatment, and rehabilitation information to stroke
survivors and their families.
American Dietetic Association/National Center
for Nutrition and Dietetics 216 West Jackson Boulevard
Chicago, IL 60606
Toll-free (800) 366-1655 (Consumer Nutrition Hotline)
Consumers may speak to a registered dietitian for
answers to nutrition questions, or obtain a referral
to a local registered dietitian.
American Self-Help Clearinghouse St. Clares-Riverside Medical Center
Denville, NJ 07834
(201) 625-7101
(call for name and telephone number of State or
local clearinghouse)
Provides information and assistance on local self-help
groups.
National Aphasia Association P.O. Box 1887
Murray Hill Station
New York, NY 10156
Toll-free (800) 922-4622
Provides information on the partial or total loss
of the ability to speak or comprehend speech, resulting
from stroke or other causes.
National Easter Seal Society 230 West Monroe Street, Suite 1800
Chicago, IL 60606
(312) 726-6200 (or check telephone book for local
Easter Seal Society)
Provides information and services to help people
with disabilities.
National Stroke Association 8480 East Orchard Road, Suite 1000
Englewood, CO 80111
(303) 771-1700
Toll-free (800) STROKES (787-6537)
Rosalynn Carter Institute Georgia Southwestern College
600 Simmons Street
Americus, GA 31709
Provides information on caregiving. Reading lists,
video products, and other caregiver resources are
available by writing to the address listed above.
Stroke Clubs International 805 12th Street
Galveston, TX 77550
(409) 762-1022 (call for the name of a stroke club
located in your area)
Maintains list of over 800 stroke clubs throughout
the United States.
The Well Spouse Foundation P.O. Box 801
New York, NY 10023
(212) 724-7209 Toll-free (800) 838-0879 Provides
support for the husbands, wives, and partners of
people who are chronically ill or disabled.
Medicare Information Consumer Information Center
Department 59 Pueblo, CO 81009By writing to this address,
you can receive a free copy of The Medicare Handbook
(updated and published annually). This handbook provides
information about Medicare benefits, health insurance
to supplement Medicare, and limits to Medicare coverage.
It is also available in Spanish.
[Figures]Figure: Sample Pages for Patient
Notebook
Information in this booklet is based on Post-Stroke
Rehabilitation. Clinical Practice Guideline, Number
16. It was developed by a non-Federal panel sponsored
by the Agency for Health Care Policy and Research (AHCPR),
an agency of the Public Health Service. Other guidelines
on common health problems are available, and more are
being developed.Four other patient guides are available
from AHCPR that may be of interest to stroke survivors
and their caregivers:
Preventing Pressure Ulcers: Patient Guide
gives detailed information about how to prevent pressure
sores (AHCPR Publication No. 92-0048).
Treating Pressure Sores: Patient Guide gives
detailed information about treating pressure sores
(AHCPR Publication No. 95-0654).
Urinary Incontinence in Adults: Patient Guide
describes why people lose urine when they don't want
to and how that can be treated (AHCPR Publication
No. 92-0040).
Depression Is a Treatable Illness: Patient Guide
discusses major depressive disorder, which most often
can be successfully treated with the help of a health
professional (AHCPR Publication No. 93-0053).
For more information about these and other guidelines,
or to get more copies of this booklet, call toll-free:
800-358-9295 or write to:
Agency for Health Care Policy and Research Publications
Clearinghouse
P.O. Box 8547 Silver Spring, MD 20907
U.S. Department of Health and Human Services Public
Health Service Agency for Health Care Policy and Research
Executive Office Center, Suite 501
2101 East Jefferson Street Rockville, MD 20852
The information contained in this
web site is not a substitute for medical advice or treatment.
Consultation with your doctor or health care professional is recommended.
About Stroke
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