RESOURCE LIST:
WELLNESS, SELF-CARE, EXERCISE
AND AGING WITH DISABILITY
Edition III- 6/96
June Isaacson Kailes, Disability Policy
Consultant
Rehabilitation Research and Training Center on Aging with Disability
Copyright © February 1995, Revised October 1995. Revised
June 1996.
Reproduction of any portion of this document is encouraged,
but only permitted if the following credit is given: compiled by June Isaacson
Kailes, Disability Policy Consultant for the Research and Training Center
on Aging with a Disability, Rancho Los Amigos Medical Center, 7601 E. Imperial
Highway Downey, CA 90242, 310 940 7402
Multiple copies of this document may be reproduced or transmitted in any
form or by any means, electronic or mechanical, including photocopying,
recording, or any information storage or retrieval system without prior
written permission.
Copies of the Resource List can be obtained by:
Internet:
e-mail: jkailes@tsbbs02.tnet.com
gopher://valdor.cc.buffalo.edu/70/00/11/.aging/.resource/.about
http://www.usc.edu/dept/gero/RRTConAging
Mail: Copies of this publication are available. Address a request to:
Rehabilitation Research and Training Center (Aging with Disability)
Rancho Los Amigos Medical Center
7601 E. Imperial Highway
Downey, CA 90242
Telephone 310.401.7402
Please indicate desired format: print copy or disk copy
(Word Perfect 5.1 or ASCII). Include $15 (International orders add 15% -
U.S. currency only), make check payable to L.A.R.E.I., Rancho Los Amigos
Medical Center, P.O. Box 3500, Downey, CA 90242.
To download a text only version (no HTML) Click here and then save the page.
Table of Contents
About the Resource List ......Page
2
Additions Welcome ......Page 2
Why a Resource List? ......Page 2
About the Research and Training Center ......Page
5
About the Author ......Page 7
How to Use This Resource List ......Page 8
Subject Index ......Page 9
Author Index ......Page 14
Resource List ......Page 18
"Eighty percent of health care today is self care, the actions people
take to bring themselves relief or prevent the condition in the first place."
- Molly Metter, National Program Director of Healthwise
About the Resource List
This Resource List focuses on wellness, self-care, health care, exercise,
and aging with a disability. It is specifically compiled for people with
disabilities and their families. This list includes articles, audio cassettes,
bibliographies, books, conference proceedings, newsletters, papers, registries,
resources, videos, and Internet resources. Listings here do not necessarily
represent an endorsement by the Research and Training Center on Aging and
Disability.
This Resource List is not an exhaustive coverage of wellness, prevention,
aging, etc. It is meant to list only resources which are disability-specific
or pertain to the area of living and aging with a disability. There are
many more resources available for the general population which may be helpful
to the reader.
Additions Welcome
This Resource List is continually being updated. Things continue to change
moment by moment and this list is only a snapshot in time. That is why each
resource list has a date entered or updated.
Additions, comments, and suggestions to improve this guide are encouraged.
Please forward your comments to: Resource List - June Isaacson Kailes, Disability
Policy Consultant, RTC on Aging with Disability, 6201 Ocean Front Walk,
Suite 2, Playa del Rey, CA 90293-7556. Internet: jkailes@tsbbs02.tnet.com,
FAX 310-827-7470.
Why a Resource List?
In the past getting older was not an issue for people with disabilities.
We didn't age, we just died! We are the first generation to live this long,
so the question is not will we live, but how well will we live? Now people
with disabilities are asking questions about the quality of our living and
the quality of our aging. This Resource List is a growing document to help
you locate information and resources.
There are many people who live with disability long-term (five to forty
plus years post onset) who are experiencing changes in function as well
as new or more significant secondary disabilities as they age. Secondary
conditions are those that occur because of the pressures of the primary
disability and may include pain, fatigue, changes in function or physical
condition, fractures, pressure sores, etc. (list # 51, Page I). Some of
these changes may be part of the typical aging process but, in many cases,
occur at earlier ages for people with disabilities than they do for people
without long-term disabilities. People who have lived with disability long-term
are experiencing signs of aging that combine elements of aging with conditions
unique to living with disability.
The process of aging not only relates to chronological age but to duration
of time spent living with disability. Depending on one's lifestyle, genetic
heritage and type of disability, living long-term with a disability produces
wear and tear on muscles, skeletal and other body systems. People are reporting
unexpected changes in their energy and activity levels as they age. Roberta
Trieschmann in Aging With Disability, (List # 49) states most people with
major physical disabilities of at least thirty years duration note some
tenderness and soreness in joints, muscles and tendons which have been carrying
the extra load of impaired physical function from other parts of the body.
Heavy use or overuse of certain body parts to compensate for lost motor
ability in other body parts can lead to problems over time. As people with
disabilities age, the physical penalty increases. Many people with disabilities
considered their disability to be static. A new or increased level of disability
or a new or more significant secondary condition(s) was not anticipated.
These issues and new realities for people with disabilities are significant
and further influenced by newly revised life expectancy statistics which
indicate the "longer you live the longer you are going to live!"
This means we are living much longer and statistics show the older you get,
the longer you're going to live. A male born today has a life expectancy
of 72-73 years and a female, about 78 years. If you reach age 65, your life
expectancy goes up an added 18 years for females and 12 years for males.
What this means for people with disabilities is most of us will live longer
than we think. As John Fries says in Aging Well, A Guide for Successful
Seniors, we have much to think about regarding what we can influence or
change in terms of the quality of our aging years. It will pay dividends
to keep ourselves in the best health possible. The question remains, how
do we do this?
Baby boomers, with and without disability, are growing older and becoming
more vocal in expressing concerns about aging. At the same time, providers
are becoming more aware of what they don't know related to what constitutes
the "typical course of aging" (List # 28, page 5). Even less is
known about the phenomenon of aging with an existing disability. There is
little general knowledge about the aging process and how it interacts with
age-related changes in functional limitations associated with disability.
There is little empirically-based information about how people with disabilities
maintain or lose function as they get older and to what degree they experience
atypical aging (List # 51, Page I-ii).
What do people with disabilities do while researchers define exactly what
these issues are and engage in slow, detailed longitudinal studies, confirming
or denying the voluminous clinical and anecdotal information that already
exists related to aging with disability? What do we do while we wait for
the knowledge gap to be filled? The awesome number of years that often elapse
from the time issues surface (anecdotal and clinical information), funds
are allocated, the issues become research priorities, the literature is
reviewed, proposals are written, proposals are reviewed, grants are awarded,
research starts, research is completed and then maybe the results get published,
results get disseminated, and finally results get utilized. The question
is, in whose lifetime does this occur? For people with disabilities the
clock is ticking and there is an urgent need for information now!
We want to anticipate the type, severity and course of age-associated changes
likely to occur as we reach middle age and older. We want to know what to
expect; what preventative steps can be taken to prevent or slow effects
of aging with disability; how to translate living longer into living better
and actively; how to prevent losing independence; and what to do to delay
new conditions and increasing disability. In other words, how do we mitigate
risk factors (including effective use of assistive technology), access resources
that will offer knowledgeable and periodic review, assessment and intervention;
and find options and choices regarding fitness, physical, social, and financial
options.
This Resource List is a beginning attempt to identify available information.
Most entries do not represent rigorous research information as such information
does not yet exist. Entries cover:
- suggested preventive health measures to reduce future complications and
secondary conditions,
- what changes some people with disabilities may expect,
- what health-care options and choices are available and the impact of current
health management techniques,
- options for clinical and self-care practices and strategies useful to
prevent secondary conditions, complications, and age-related conditions.
Entries include resources as well as anecdotal information and clinical
observations to help people with disabilities look at options in terms of
what we can influence or change regarding the quality of our lives and the
quality of our aging.
About the Research and Training Center
AGING WITH A DISABILITY RANCHO LOS AMIGOS MEDICAL CENTER
Rehabilitation Research and Training Center on Aging With a Disability
DESCRIPTION: The Rehabilitation Research and Training Center
(RRTC) on Aging With a Disability is funded by the National Institute on
Disability and Rehabilitation Research (NIDRR), a part of the U.S. Department
of Education. There are about 40 such Centers, all of which focus on a specific
problem affecting people who have a disability. This RRTC is a collaborative
effort of Rancho Los Amigos Medical Center and the University of Southern
California. The purposes of the Center are 1) to conduct research in our
problem area, 2) to train others about findings in this area as well as
how to conduct rehabilitation research, and 3) to disseminate information
to consumers and professionals.
STAFFING
Center Director: Bryan Kemp, PhD
Research Director: Margaret Campbell, PhD
Training Director: Laura Mosqueda, MD
Consumer Dissemination: June Kailes, MSW
Principal Research Investigators:
Rodney Adkins, PhD
Phoebe Leibig, PhD
Don McNeal, PhD
Judith Mitchell, PhD
Jacquelin Perry, MD
Debra Sheets, RN
Nancy Somerville, BS
Chairperson of Advisory Committee: Leonard Matheson, PhD
THE ISSUE: One of the most important changes in the United
States over the last 50 years has been the rapid increase in the number
of people living into their 70s, 80s and beyond. Today, average life expectancy
is 78 years compared to 47 years in 1900. All persons are displaying increased
longevity, including people who sustained a disability at some point earlier
in their lives. While it used to be thought a condition such as polio or
cerebral palsy was pretty static after its initial onset, evidence has shown
many people experience the onset of medical, functional, social and psychological
problems as they age. Muscle weakness, fatigue, pain, heart disease, respiratory
infection, as well as premature job loss, discouragement, and worry have
all been reported. Until recently, little research focused on understanding
or treating these problems. Unless we have better diagnostic and assessment
tools, better understanding of the processes involved and better ideas of
what to do and how to help, we won't reduce the impact of aging on people
who have a disability.
RESEARCH PROGRAM: (See List #93)
CONSUMER DISSEMINATION: A unique feature of this RRTC is
its strong emphasis on getting useful and current information to people
with disabilities and their families. These audiences are the ultimate beneficiaries
of the RRTC's efforts. A variety of techniques are being used to disseminate
information including articles in consumer publications, presentations at
consumer meetings, computer network bulletin boards, distribution of updates
on current research and publication of a resource manual. This Resource
List is one product of the consumer dissemination initiative!
TRAINING PROGRAM: (See List #93)
Rehabilitation Research and Training Center
Rancho Los Amigos Medical Center
7601 E. Imperial Highway
Downey, CA 90242
310 940 7402
About the Author
June Isaacson Kailes has been active as a disability rights advocate and
program developer in the independent living movement since the late '60s.
June provides consulting and training for businesses, universities, state
associations, government entities, centers for independent living and other
not-for-profit organizations. She consults in the areas of implementing
the Americans with Disabilities Act of 1990; advocacy training and skills
building (leadership development); aging with disability; planning (short-term,
strategic and long-term); writing publications and grants; incorporating
universal design theory into existing and new environments and products;
targeting the disability market; managing, evaluating, program developing,
and fund raising for centers for independent living and other social service
agencies; planning barrier free meetings; telecommunications including using
computer bulletin board systems effectively; and training in disaster preparedness
for people with disabilities.
Prior to establishing a full-time consulting practice in 1989, June was
the Executive Director of the Westside Center for Independent Living (WCIL)
in Los Angeles for eight years. June earned a Masters degree in Social Work
from the University of Southern California and a Bachelor of Arts in Psychology
from Hofstra University. One of the original national leaders in the Independent
Living Movement, June held many offices in the National Council for Independent
Living and the California Coalition of Independent Living Centers. June
has written numerous articles, book chapters, monographs and training manuals.
Her latest book is A Guide to Planning Accessible Meetings.
How to Use This Resource List
Entries may be located by using the author or the subject index. Entry categories
include:
List #: entries are listed in numeric order
Type of information:
Title/Subject:
Author(s):
Minutes/Pages:
Produced/Published/Began:
CONTENT: focus
COST: price
SEND: where to order or send for information
INFO: contact person and phone/ TTY / FAX number
Entered: initial entry or update
For example:
2 - BOOK: A Resource Guide for Fitness Programs; 116 pages. CONTENT: Offers
an approach to fitness programming for the older adult, including tips on
how to assess individual, social, and institutional barriers to programming.
The guide addresses walking programs, fitness fairs, and fitness education;
COST: Order No. 2019, $5.00 Plus $2.00 shipping and handling. SEND: National
Council on the Aging, Department 5087, Washington, DC 20061-5087. INFO:
202-479-1200. Entered 9/02/94.
If an entry category is not listed, (i.e., cost, publication date or author)
it is because the information was unavailable at the time this edition of
the Resource List was published.
SUBJECT LIST
Advocacy
Aging
Attendants
(see Personal Attendant Services)
Arthritis
Autonomic Dysreflexia ......Entry# 155
Breathing Support ......Entry#
14
Cerebral Palsy ......Entry#
20, 21, 27,
30, 51, 70,
94, 139
Chronic Fatigue ......Entry#
143
Cross Disability Focus
......Entry# 16, 20, 23, 49, 51,
59, 60, 65,
68, 69, 70,
98
Depression ......Entry#
76, 157
Developmental Disabilities
......Entry# 43, 44, 45, 46, 47,
56
Exercise
Falls ......Entry#
82
Fitness (See Exercise)
Health Care
Injury Prevention and Safety ......Entry# 148
Internet ......Entry#
20, 118, 119
Latex Allergy ......Entry#
134
Living Wills ......Entry#
151
Managed Care ......Entry#
149, 154
Medical Records ......Entry#
31
Nutrition ......Entry#
147, 157
Osteoporosis ......Entry#
74
Pain ......Entry# 140, 157, 164
Parkinson's Disease
......Entry# 111
Personal Attendant Services
......Entry# 113
Physical Therapy ......Entry#
13
Polio ......Entry# 15, 16, 22,
26, 52, 53,
58, 76, 118,
165
Pressure Sores ......Entry# 141,
155
Psychiatric Disabilities
Recreation (See Sports)
......Entry# 33
Rehabilitation ......Entry#
18, 25
Resources
Scoliosis ......Entry#
15
Self Care
Sexuality ......Entry#
16, 113
Skin ......Entry# 130
Spina Bifida
Spinal Cord Injury ......Entry# 23, 26, 48, 49, 73, 113
Stroke ......Entry#
16, 17, 77
Urinary Tract Infections ......Entry#
142
Wheelchair athletes
......Entry# 25
Wheelchair users
Women
World Wide Web (WWW)
......Entry# 119
Author Index
1 - BOOK: EXERCISE AND OLDER ADULTS, by National Eldercare
Institute on Health Promotion: SEND: AARP, 601 E. Street, NW, 5th Floor,
Building B, Washington, D.C. 20049. INFO: 202-434-2200. Entered - 9/2/94.
Back to the Subject List ..... Back
to the Author Index
2 - BOOK: A RESOURCE GUIDE FOR FITNESS PROGRAMS, Pages 116; CONTENT: Offers
an approach to fitness programming for the older adult, including tips on
how to assess individual, social, and institutional barriers to programming.
The guide addresses walking programs, fitness fairs, and fitness education;
COST: Order No. 2019, $5.00 plus $2.00 shipping and handling. SEND: National
Council on the Aging, Department 5087, Washington, D.C. 20061-5087. INFO:
202-479-1200. Entered: 9/2/94
Back to the Subject List ..... Back
to the Author Index
3 - BOOK: BODY RECALL; A PROGRAM OF PHYSICAL FITNESS FOR THE ADULT, Audio
Cassette to accompany book, by Chrisman, D; pages 205; 1994: CONTENT: Offers
various movement and strength exercises that can be done sitting, standing
or lying down, as well as information on body mechanics, including proper
posture, and avoiding injury from falls. Large print, illustrations, explicit
exercises for varying physical abilities, lesson plans ranging from basic
movements to challenging and demanding physical activity, falls and recovery,
foot care and body maintenance. COST: $21.00 including shipping and handling,
$6.00 instructional tape to accompany the textbook. SEND: Body Recall, Inc.,
P. O. Box 4122, Berea, KY 40403. INFO: 606-986-2182, Dorothy Chrisman. Entered:
9/2/94.
Back to the Subject List ..... Back
to the Author Index
4 - BOOK: WATER WORKOUTS, by Knopf, K,. Fleck, L., & Martin, M., Pages
136, 1992; CONTENT: Guide to water exercise programs for fitness which includes
an extensive choice of water exercises, all performed in the shallow end
of the pool and adaptable to individual needs. Suggestions included for
programs on various levels of exercise and each exercise is illustrated.
A non-impact exercise way to improve one's physical fitness levels without
subjecting the body to the stress often associated with jogging, weight
training, and/or aerobic dancing. Provides a menu of different exercises
from which to develop an individualized fitness program based on personal
goals. Sample exercise programs are suggested for the novice, intermediate
and advanced participant. Exercise routines are provided for people involved
with particular sports or people who have various types of medical conditions
or disabilities. Water helps support the body without stress to the joints
and ligaments. Every exercise is isokinetic (equal resistance throughout
the movement). SEND: Hunter Textbooks, Inc., 823 Reynolda Road, Winston-Salem,
NC 27104. INFO: 919-725-0608. Entered: 9/2/94.
Back to the Subject List ..... Back
to the Author Index
5 - AUDIO CASSETTE: SEATWORKS, by Gober, B., 35 minutes, 1987. CONTENT:
A workout to music for seated individuals designed to accommodate a wide
range of ages and capabilities. An accompanying booklet gives specific suggestions
for use with older adults with written instructions and illustrations of
each exercise. Easily tailored to individual ability. Can generate an aerobic
pulse rate or individuals can participate at their own pace and level of
ability. Different bands of this tape can be chosen depending on the age
and capability of the user. For example, those who cannot use their legs
can choose only the bands that involve upper extremity movements. COST:
$10.95, $11.95, plus $3.50 shipping and handling. SEND: Kimbo Educations,
Box 477, Long Branch, NJ 07740. INFO: 800-631-2187.
Back to the Subject List ..... Back
to the Author Index
6 - AUDIO CASSETTE: SITTERCISE, 35 minutes, 1982. CONTENT: The program begins
with 1) stretching activities designed to stretch the tendons, ligaments
and muscles while preparing for exercise; 2) warm-up activities are designed
to gradually introduce and intensify the exercise sessions and familiarize
the participants with movement opportunities; 3) fast-paced activities incorporated
to achieve aerobic or near-aerobic pulse rates; 4) cool-down activities
which aid in slowing the participants down gradually and preparing for the
recovery phase; 5) relaxation training activities which are included so
participants learn how to eliminate residual muscle tension. Using the carotid
pulse, everyone can learn for themselves how they respond to exercise. The
unique aspect of this cassette is that it is designed to accommodate the
widest possible audience by allowing the user to make a customized tape
by choosing the appropriate bands from the original tape. For example, wheelchair
users unable to use their legs will only want to utilize the bands that
require upper arm and shoulder movements and eliminate the one band where
there are stand-up and sit-down exercises. If you are unable to use included
are information sheets which illustrate the bands that deal with leg and
foot work. SEND: Kimbo Educations, Box 477, Long Branch, NJ 07740. INFO:
800-631-2187. Entered: 9/20/94.
Back to the Subject List ..... Back
to the Author Index
7 - AUDIO CASSETTE: WHEELCHAIR WORKOUT WITH JANET REED, with 43-page information
manual with illustrated fitness and nutrition tips. 30 minutes, 1983. CONTENT:
Conducted by a woman with a disability who uses a scooter. This program
of upper body exercises can be done from a wheelchair, scooter, sturdy chair
or standing up. Format is divided into three parts: warm-up, work-out, cool-down.
Exercises are designed to increase muscle strength and endurance and promote
flexibility of joints. The work-out has 47 different movements including
extensions, stretches, twists, reaches and range of motion. All done from
a sitting position. On one side of the tape is the exercise narration with
music. On the other side is music only to tailor new or additional exercises.
COST: Cassette and manual $18.75, cassette only $10.50, information manual
only $8.25. SEND: Wheelchair Workout, 12275 Greenleaf Avenue, Potomac, MD
20854. INFO: 301-279-2994 - Janet Reed. Entered: 6/15/94.
Back to the Subject List ..... Back
to the Author Index
8 - VIDEO: FITNESS AND INDEPENDENCE WITH JANET REED, 14 minutes, 1991. CONTENT:
Conducted by a woman with a disability who uses a scooter. This program
of upper body exercises can be done from a wheelchair, scooter, sturdy chair
or standing up. Short tape demonstrates upper body exercises and includes
quite a bit of biographical information on the instructor, Janet Reed. COST:
$17.45 VIDEO, $23.70 video and information manual mentioned above, $34.20
video, audio tape and information manual mentioned above. All prices include
first class postage/handling. SEND: JSR Enterprises, Inc. 12275 Greenleaf
Avenue, Potomac, MD 20854. INFO: 301-279-2994 - Janet Reed. Entered: 9/3/94.
Back to the Subject List ..... Back
to the Author Index
9 - VIDEO: FOCUS ON FITNESS - STAY FIT FOR LIFE, 45 minutes. CONTENT: Exercise
program for adults over 50, developed by a health and fitness professional.
The exercises are of mild to moderate intensity and can be modified for
different fitness levels. The entire class can be done sitting, standing
or both. There is a significant amount of lower and upper extremity exercises.
Tape shows an exercise class which includes: warm-up of limbering movements
and static stretches (10 minutes); peak period of muscle strengthening and
free standing floor movements (20 minutes); cool-down stretches (10 minutes);
relaxation (5 minutes). COST: $19.95 plus $3.95 shipping and handling per
order. SEND: Downtown Atlanta Senior Services, 607 Peach Tree Street, Atlanta,
GA 30365. INFO: 404-872-9191. Entered: 9/3/94.
Back to the Subject List ..... Back
to the Author Index
10 - AUDIO CASSETTE: KEEP FIT WHILE YOU SIT, 35 minutes. CONTENT: Offers
seven minutes of warm-up exercises, followed by 20 minutes of aerobics for
the different parts of the upper body, and then an eight-minute cool-down.
A more advanced workout designed to increase circulation, respiratory capacity,
flexibility, muscle tone and strength. Not age specific. COST; $29.95. SEND;
Avenues Unlimited, Inc. 1199K Avenida Acaso, Camarillo, CA 93012. INFO:
800-848-2837. Entered: 9/2/94.
Back to the Subject List ..... Back
to the Author Index
11 - VIDEO: LET'S GET FIT, 60 minutes. CONTENT: Video fitness program set
to music, specifically designed for the older adult. It provides guidance
for use with groups or individuals. For people who are ambulatory and have
good balance as well as good use of upper and lower extremities. COST; $20.00
plus $3.00 shipping and handling. SEND: Shepherd's Center, 5200 Oak Street,
Kansas City, MO 64112. INFO: 816-444-1121. Entered: 9/2/94.
Back to the Subject List ..... Back
to the Author Index
12 - VIDEO: SWING INTO SHAPE, Three 30-minute routines. CONTENT: A low intensity
non-aerobic exercise program that includes three different levels of non-aerobic,
low-intensity exercises to choose from allowing participants to build endurance
over time. Designed for use by older adults and those with physical disabilities
who have use of both upper and lower extremities as well as relatively good
trunk balance. Level I - Exercises are done while seated in a chair. Level
II - Most exercises are done while seated, but some are performed while
standing using a chair for support. Level III - Primarily performed while
standing, this routine does have a few exercises from a seated position.
Each routine begins with warm-up, followed by continuous movement and a
cool-down period. Each level can stand alone as a separate exercise class.
COST: $39.95 for complete, three-level program or $14.95 for additional
exercises for level I, II or III (specify), plus $4.00 shipping and handling.
Check payable to: Lutheran Hospital - La Crosse. SEND: Lutheran Hospital
- La Crosse, Product Marketing, 1910 South Avenue, La Crosse, WI 54601-9980.
INFO: 800-362-9567, extension 4787 and to order by phone with credit card.
Entered: 9/15/94.
Back to the Subject List ..... Back
to the Author Index
13 - ARTICLES; BECOMING AN INTELLIGENT CONSUMER OF PHYSICAL THERAPY SERVICES
IN POLIO NETWORK NEWS, by Weiss, M.T., 9 pages, Winter 1993, Vol. 9. No.
1, Part 1 pp 1-5; Spring 1993, Vol. 9, No. 2, Part II, pp 1-4. CONTENT:
PART I details how to find and use the services of a physical therapist
(PT). Primarily written for post-polio survivors, but has a lot of relevant
information for people with other disabilities considering the services
of a physical therapist. Reviews why one should consider seeing a PT, how
to find and choose a PT as well as the importance of reasonable expectations.
Part II deals with the importance of evaluating strength, posture, bed mobility
and transfers, gait testing, skin, assessment of appliances and pain. SEND:
Polio Network News, International Polio Network, Gazette International Networking
Institute (G.I.N.I.) 5100 Oakland Ave., #206, St. Louis, MO 63110-1406.
Entered: 9/13/94.
Back to the Subject List ..... Back
to the Author Index
14 - BOOKLET: BREATHING SUPPORT OPTIONS: A CONSUMER PERSPECTIVE, Colgan,
M., 43 pages. CONTENT: Resources, including a glossary, assists potential
ventilator users in exploring the many options available. part I covers:
The Process: Decisions in the Use of Breathing Support Equipment. Part II
covers: The Opinion: Breathing Support Equipment from a Consumer Perspective.
COST: $10.00 postpaid to organizations or individuals who can afford it.
Free copies to individuals exploring their own breathing needs. SEND: Maureen
Colgan, Independent Living Resource Center, 201-294 Portage Ave., Winnipeg,
Manitoba, R3C0B9, Canada. INFO: 204-947-0194 voice/TTY. Entered: 9/2/94.
Back to the Subject List ..... Back
to the Author Index
15 - NEWSLETTER; SPECIAL FEATURE: SCOLIOSIS IN POLIO NETWORK NEWS, 12 pages,
Spring 1992, Vol. 8, No. 2. CONTENT: Features two polio survivors who share
their insights as well as detail intervention options such as making a decision
to consult a surgeon, being clear about what you want to improve, gathering
information, how to search for an experienced surgeon, resources and finances.
SEND: Polio Network News, International Polio Network, Gazette International
Networking Institute (G.I.N.I.) 5100 Oakland Ave., #206, St. Louis, MO 63110-1406.
Entered: 12/4/94.
Back to the Subject List ..... Back
to the Author Index
16 - BOOK: AGING WITH DISABILITY IN THE NINETIES...WHAT LESSONS CAN BE LEARNED
FROM AGING WITH POLIO AND STROKE, Campbell, M.L. and Jacobs, A. W., 15 pages.
CONTENT: Proceedings from a conference: Meeting the Challenges of Aging
with a Disability: Lessons Learned from Post-Polio and Stroke held in March
of 1993, Long Beach, CA. The conference, sponsored by Rehabilitation Research
and Training Center on Aging and Disability and Rancho Los Amigos Medical
Center, covered current information on the medical, physical and psychosocial
aspects of aging as it relates to people who have had polio or a stroke.
Includes:
- Aging with a Disability: A Life Course Perspective
- Aging and Disability: A Comparison of Health Related Changes
- The Late Effects of Polio
- Welcomed New Perspectives in Meeting the Challenge of Living After Stroke
- Exercise: When, How and Why
- Coping with Disability: A Challenge at All Ages
- Dialogue Between Physicians and Consumers: Obtaining Better Health Care
- Promoting Personal Growth Through Disability
- Love, Sex and Disability
COST: $28.00 each, California residents add sales tax. Mail check or money
order payable to L.A.R.E.I. SEND: L.A.R.E.I., Rancho Los Amigos Medical
Center, P. O. Box 3500, Downey, California 90242. Entered: 12/4/94.
Back to the Subject List ..... Back
to the Author Index
17 - BOOK: THE INVALUABLE GUIDE TO LIFE AFTER STROKE; AN OWNER'S MANUAL,
Josephs, A., 12 pages, 1987. CONTENT: Written from the perspective of a
man who has been there! This short, easy to read, guide details some of
the experiences and emotional reactions one may expect after having a stroke.
Written by a former lawyer the book uses anecdotal information, contains
technical advice as well as some medical information which can be of help
to other people who have experienced stroke. Audience is not only people
who have survived strokes, but also their families and significant others.
The book uses stereotypical language, rather than disability-neutral language
related to people with disabilities, such as courage, bravery, imprisoned,
victim, confined, etc. COST: $14.95, plus $1.75 shipping. CA Residents add
sales tax. SEND: Amadeus Press-B, P. O. Box 13011, Long Beach, CA 90803.
Entered: 11/12/94.
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18 - ARTICLES: HEALTH CARE AFTER REHABILITATION SPONSORED BY THE AMERICAN
CONGRESS OF REHABILITATION MEDICINE AND POST REHABILITATION HEALTH CARE
FOR PEOPLE WITH DISABILITIES: AN UPDATE ON THE 1989 WHITE PAPER OF THE AMERICAN
CONGRESS OF REHABILITATION MEDICINE. ADDRESSING THE POST-REHABILITATION
HEALTH CARE NEEDS OF PERSONS WITH DISABILITIES. THE ACRM COMMITTEE ON SOCIAL,
ETHICAL, AND ENVIRONMENTAL ASPECTS OF REHABILITATION IN ARCHIVES OF PHYSICAL
MEDICINE AND REHABILITATION, by DeJong, G., pages S1-S8. December 1993,
Volume 74, No 12-S, W.B. Saunders Company, a Division of Harcourt Brace
and Company Chicago, IL. CONTENT: These excellent articles detail the importance
and significance of people with disabilities advocating for health services
that really meet their needs after acute medical rehabilitation is completed
and the lack of good health care delivery strategies in the areas of primary
health care, health education and health promotion needs of people with
disabilities. The articles state lack of access to these primary health
care services contribute to recurring but often preventable health problems.
There is a tendency for people with disabilities to assimilate into the
larger society and distance themselves from rehabilitation providers who,
in one sense, remind them of an earlier period many would rather forget.
People with disabilities find physicians often lack knowledge of their health
problems forcing them to seek assistance from rehabilitation physicians.
These articles discuss the need for new innovative systems. They make the
case that rehabilitation providers' higher level knowledge about the health
needs of people with disabilities places a unique and high responsibility
on the field of taking a leadership role with respect to health service
needs after rehabilitation is completed. Rehabilitation's commitment to
people with disabilities needs to extend well beyond the discharge from
rehabilitation services. Entered: 9/29/94.
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19 - ARTICLE: DELIVERY OF PRIMARY CARE TO THE PHYSICALLY CHALLENGED IN ARCHIVES
OF PHYSICAL MEDICINE AND REHABILITATION, by Gans, B.M., Mann, N. R. &
Becker, B.E., pages S15-S19. December 1993, Volume 74, No. 12-S, W.B. Saunders
Company, a Division of Harcourt Brace and Company Chicago, IL. CONTENT:
Discusses the history of health service needs of people with disabilities
and examines the issues of need and delivery of services. Model programs
designed to meet those needs are also described. The models are only a couple
of many innovations needed to fully address the health needs of the underserved
population of people with disabilities. Entered: 9/29/94.
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20 - NEWS GROUP; AGING WITH DISABILITY (AWD), hosted by Kailes, J.. FOCUS:
A conference area on Dimenet (Disabled Individual's Movement for Equality
Network) which offers an open forum to discuss aging with disability and
related issues, questions and resources. Dimenet is a national computer
networking system that is accessible at multiple locations and provides
access for communications and information sharing among individuals involved
in the disability rights and independent living movements. It is operated
and controlled by people with disabilities. INFO: Set your communications
parameters at 8 bits, one stop bit and no parity. The on-line phone numbers
to reach Dimenet are (508) 880-5412 Taunton, MA; (513) 341-5205 Dayton,
OH; and (918) 582-3622 Tulsa, OK. Once you are connected, first type "dime"
in lower case letters then press <ENTER>. If you have questions, problems,
or would like to obtain a user manual, call (513) 237-8360 Voice for assistance.
You can download a user manual from Dimenet (located in the "General
Documents File Area" the file name is manual.dme - WordPerfect or manual.txt
- ASCII). Entered: 6/6/94.
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21 - REPORT: "I'M WORRIED ABOUT THE FUTURE" THE AGING OF ADULTS
WITH CEREBRAL PALSY, by Overeynder, J.C., Turk, M.A., Dalton, A., &
Janicki, M., 16 pages, June 1992. CONTENT: This report describes the findings
of a workgroup on cerebral palsy and aging. The report covers medical and
physical aspects of aging and cerebral palsy and the frustrations and problems
associated with assessing primary health care. Defines cerebral palsy and
reviews the various manifestations of the condition, as well as its incidence
and prevalence. Points to a trend that older people with CP may have earlier
age-specific related conditions than their age peers without CP. The report
details the epidemiological, medical, health, social and functional issues
that need further research. SEND: New York State Developmental Disabilities
Planning Council, 155 Washington Avenue, Albany, New York 12210. Entered:
9/29/94.
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22 - FACT SHEET: POLIOMYELITIS FACT SHEET: AN OVERVIEW OF THE LATE EFFECTS
OF POLIO, 1 page. CONTENT: The fact sheet addresses some of the concerns
related to the late effects of polio (an overview of the information now
available). SEND: Institute (G.I.N.I.), International Polio Network, 5100
Oakland Avenue, #206, Saint Louis, Missouri 63110. INFO: 314-534-0475. Entered:
9/30/94.
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23 - ARTICLE: SYSTEM BY SYSTEM; THE GRIM SLIDE IN NEW MOBILITY MAGAZINE,
by Maddox, S. pages 37-39, 41-43, Summer 1992. CONTENT: Summarizes some
of the content of a conference on aging with spinal cord injury held in
March, 1992. Specific recommendations are made for people with spinal cord
injury regarding living longer and healthier. The article reviews possible
changes people with spinal cord injury may experienceand advices how to
cope with potential changes in skin, muscles and bones, lungs, heart, urinary
system, gastrointestinal, nervous system, and immune system. Entered: 10/29/94.
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24 - ARTICLE: THE WEIGHT-BEARING ARM: SINGING THE PARA-PROPULSION BLUES
IN NEW MOBILITY MAGAZINE, by Pentland, W., page 41, Summer 1992. CONTENT:
Reviews some of the potential liabilities of what happens to the arms of
long-term wheelchair users. One finding: changes were not so much related
to old age but duration of spinal cord injury. Greater than 15 years functioning
with spinal cord injury was often related to decreased strength and flexibility
with increased pain. Lists tips for prevention and mitigation of pain. Entered:
10/29/94.
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25 - ARTICLE: JOCKS AND THEIR SHOULDERS IN NEW MOBILITY MAGAZINE, Cooke,
K. Z., 42 pages, Summer 1992. CONTENT: Details experience of seven wheelchair
jocks with regard to shoulder pain. Entered: 10/29/94.
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26 - ARTICLE: POST-POLIO RESEARCH UPDATE in RANCHO LOS AMIGOS POST POLIO
SUPOORT GROUP NEWSLETTER, Perry, Dr. Jacquelin, 5 pages, March 1996. CONTENT:
Overview of current research approaches to managing Post-Polio Syndrome
(PPS) including reports of studies on nerve axon overuse, medications used
for treating PPS fatigue and paid, and myoneural junction overuse. COST:
$5.00 + $2.00 shipping for an audio tape of Dr. Perry's lecture. SEND: Ken
Baragar, 817 Irivng Place, Anaheim, CA 92805-5025. INFO: 310-401-7177. Entered:
4/7/96
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27 - CHAPTER: CEREBRAL PALSY IN ADULTS WHO ARE OLDER, CHAPTER 6 from AGING
AND DEVELOPMENTAL DISABILITIES - AN IN-SERVICE CURRICULUM, MACHEMER, R.H.
7 OVEREYNDER, J.C., EDS., By Turk, M.A., & Machemer, R. H., pages 111-129,
1993, University of Rochester, Rochester, NY. CONTENT: A good overview of
cerebral palsy. Defines cerebral palsy, its cause and types. Explores issues
related to health, aging, secondary conditions, and intervention strategies.
Professional chapter full of good information. Entered: 10/29/94.
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28 - ARTICLE: COMPLEMENTARY SELF-CARE STRATEGIES FOR HEALTHY AGING, IN SELF-CARE
AND OLDER ADULTS MAGAZINE, by Barrett, S., pages 49-52, Fall 1993. CONTENT:
Focuses on complimentary or alternative self-care both in terms of collaboration
with the primary care physician and individual exploration of self-care
practices. Details the definition of self-care and describes it as a growing
movement. Entered: 11/6/94.
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29 - ARTICLE: BABY BOOMERS GROW UP, IN HOSPITALS & HEALTH NETWORKS MAGAZINE,
by Lumsdon, K., page 24, 9/20/93. CONTENT: Discusses the growing number
of people who are assertive in seeking and maneuvering through their own
health services. Makes the point that unlike their parents and grandparents,
baby boomers don't see doctors as gods. They're looking for the right services
for the right money. They have questions about treatment options and cost
and then take charge of the decision. Baby boomers: tend to pore over self-help
books, videos, data bases - looking for more; refuse to accept advice and
advice-givers at face value; demand convenience and excellent service; ask
for evidence of quality and expertise; expect continuity of care; and explore
alternative therapies. Details the importance of shared decision making
among physicians and patients. Baby boomers tend to be more demanding patients
in any treatment setting. "After all, this is the 'challenge authority'
generation. Though baby boomers have entered the mainstream in many respects,
they remain suspicious of receiving bad advice or being hoodwinked."
Entered: 12/4/94.
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30 - NEWSLETTER: THE NETWORKER, United Cerebral Palsy Associations, Program
Services Department, Vol. 7, No. 1, pages 1-23, Fall 1993. CONTENT: Issue
on aging and cerebral palsy (CP) details experience from personal perspectives
on aging with CP; social and emotional dilemmas; exercise and fitness; mobility
issues; and gives the recommendations from a National Colloquium on Aging
with CP and follow-up activities. SEND: United Cerebral Palsy Associations,
Inc. Community Services Division, 1522 K Street, N.W., Suite 1112, Washington,
DC 20005. INFO: 800-USA-5UCP V/TTY, 1-202-842-1266 V/TTY.
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31 - MAGAZINE: DISABLED USA, Vol. 4, No. 2, pages 1-33, 1980. CONTENT: The
issue deals with seeking effective medical services. Articles include: Getting
Needed Treatment; Your Medical Records and Four Steps to Getting Your Medical
Records (both a bit outdated); Improving Doctor Performance and Self Health.
SEND: The President's Committee on Employment of People With Disabilities,
1331 F Street, N.W., Washington, DC 20004-1107. INFO: 202-376-6200 voice,
202-376-6205 TTY, 202-376-6219 FAX.
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32 - ARTICLE: THE FINE ART OF GETTING WHAT YOU WANT (AND NEED) FROM A DOCTOR,
IN WOMANS DAY, by Berman, H.S., Burhenne, D.P., & Rose, L., pages 1,44,26,48,51,54,
11/15/83. CONTENT: An excellent how-to article which details strategies
for getting what you want from a doctor. Strategies include deciding what
you really want; talking to your doctor tips; how to ask for a second opinion;
why you don't want one of the top ten doctors in the country; the etiquette
of referrals; when your doctor makes a mistake; why doctors don't make house
calls; when there's a problem call sooner, not later; tips on absolutely
enraging your doctor; three things your doctor may do to enrage you; and
when to change doctors. From their book The Complete Care Advisor, published
by Market/St. Martin's Press.
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33 - BOOKLET: A GUIDE TO WHEELCHAIR SPORTS AND RECREATION, 28 pages. CONTENT:
An excellent resource for people who want to get involved or more involved
in wheelchair sports and recreation. The guide is a general introduction
to the kinds of sports equipment and activities available nationally. It
features an extensive list of groups and companies for activities and products.
SEND: Paralyzed Veterans of America, 801 Eighteenth Street, NW, Washington,
DC 20006. INFO: 202-872-1300, 202-416-7622 TTY. Entered: 11/6/94.
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34 - VIDEO: SEAT-A-ROBICS, by Daria Alinovi, President, 50 minutes, 1993.
CONTENT: Instructional video on fitness for people with physical disabilities
and seniors. Tape includes two classes. Must have some use of upper extremities.
Instructor and class participants are all people with disabilities. Class
1 - "Endurance" consists of warm-up, aerobic conditioning and
cool-down. Covers monitoring resting and target heart rates; safety tips;
and adaptive exercises for people with physical disabilities and older adults.
Class 2 - "Body Sculpting" incorporates light hand weights. The
focus is to improve muscular strength and body contour while demonstrating
proper form. "How to" instructions are highlighted. A cool down
segment and range of motion stretches from the floor conclude the class.
These cool down stretches can also be done from a chair. COST: Each tape
- $24.50 Class 1 and 2. Specify which tape. (New York State residents add
tax); both classes on one tape $36.95. SEND: P. O. Box 630064, Little Neck
NY 11363-0064. INFO: 800-484-7046 x1130, 718-631-4007, Dari Alinovi. Entered:
8/31/94.
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35 - VIDEO: SIT AND BE FIT, 30 minutes. CONTENT: A vigorous workout for
seated people of all ages. Designed to promote maximum health through aerobic
work and muscle conditioning. Provides an upper-body conditioning program
intended to promote better posture; more strength and muscle tone; greater
flexibility; increased total-body circulation; improved energy; and confidence.
SEND: Karen & Mark Wilson, 10201 North 58th Place, Scottsdale, AZ 85253.
INFO: 602-998-8455. Entered: 12/4/94.
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36-41 - VIDEOS: FITNESS IS FOR EVERYONE VIDEOTAPE SERIES: Each aerobic program
includes a warm-up, an aerobic routine and a cool-down. The exercise modifications
are for the functional categories described below. Individuals with disabilities
and their family members and friends without disabilities may work out with
these tapes. A demonstrator with and without a disability is featured in
each exercise routine, 30 minutes. See individual entries below for information
about specific programs in this series. Produced by National Handicapped
Sports. COST: See below and add $4.50 per item for shipping and handling.
SEND: National Handicapped Sports/Videotapes, 451 Hungerford Drive, Suite
100, Rockville, MD 20850. INFO: 301-217-0960, 301-217-0968 FAX, 301-217-0963
TTY.
36 - VIDEO: AEROBICS FOR AMPUTEES. CONTENT: Vigorous exercise for ambulatory
individuals who have impaired balance and/or coordination; people who can
exercise standing up but cannot do fancy footwork that may upset balance.
This program features low-impact, simple arm and leg movements. COST: $17.00
(see List #36-41 above for complete ordering information).
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37 - VIDEO: AEROBICS FOR PARAPLEGICS. CONTENT: Vigorous exercise for nonambulatory
individuals with good upper body functioning and coordination. Includes
utilizing full trunk, arm and shoulder muscles. Incorporates simple jogging
and leg movements. (Instructor - no disability) COST: $17.00 (see List #36-41
above for complete ordering information).
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38 - VIDEO: AEROBICS FOR QUADRIPLEGICS. CONTENT: Vigorous exercise for nonambulatory
individuals with limited upper body function such as individuals with a
T-6 or higher spinal cord injury or people with significant full body impairments.
Program features primarily upper torso; shoulder and arm movements; and
shifts frequently to prevent muscle fatigue. Demonstrates simple low-impact,
full-body movements of low intensity. Instructor - no disability. COST:
$17.00 (see List #36-41 above for complete ordering information).
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39 - VIDEO: AEROBICS FOR CEREBRAL PALSY. CONTENT: Vigorous exercise for
ambulatory or nonambulatory individuals with muscular coordination difficulties.
Program features a prolonged warm-up followed by exercise using easy-to-follow
upper body movements. Low-impact, rhythmic full body actions are demonstrated.
COST: $17.00 (see List #36-41 above for complete ordering information).
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40 - VIDEO: STRENGTH AND FLEXIBILITY EXERCISE. CONTENT: A full body routine
of strength training exercises demonstrated by a wheelchair-user and a stretching
routine demonstrated by an above-the-knee amputee. Routines are presented
in a head-to-toe sequence so individuals can participate in consecutive
exercises as their available functioning muscle mass allows. Instructor
- no disability. COST: $25.50 (see List #36-41 above for complete ordering
information).
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41 - VIDEO: ADAPTIVE SKI TEACHING METHODS: A Practical Approach for Instructors
Video and Manual. CONTENTS: Contains information to help professional and
volunteer ski instructors teach students with disabilities. COST: Video
alone $29.95; manual alone $21.50; video & manual $39.95 (see List #36-41
above for complete ordering information).
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42 - RESOURCE: National Handicapped Sports (NHS) is a national nonprofit
charitable education association providing information as well as sports
and recreation opportunities to people with physical disabilities through
a network of over 85 community-based groups, currently serving over 60,000
people nationwide. NHS offers the following programs and services:
- Recreational winter and summer programs through a network of community-based
groups
- Learn to ski and race clinics for beginning and intermediate disabled
skiers
Winter competition programs in alpine (downhill) and Nordic (cross country)
skiing
- Summer competition programs in archery, basketball, canoeing, cycling,
kayaking,
lawn bowling, sailing, shooting, swimming, table tennis, track and field,
volleyball,
water skiing and weightlifting
- Training camps for members of the U.S. Disabled Ski Team and the U.S.
Amputee
Summer Sports Team
- Aerobic fitness
- Special programs for children, women and veterans with disabilities
- Training and Certification for adaptive ski and adaptive fitness instructors
- Educational videotapes and instruction manuals for adaptive ski and fitness
instruction
SEND: NHS National Headquarters, 451 Hungerford Drive, Suite 100, Rockville,
MD 20850. INFO: 301-217-0960, 301-217-0968 FAX, 301-217-0963 TTY.
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43 - RESOURCE: AGING/DD CLEARINGHOUSE. FOCUS: Provides information and referrals
related to older persons with developmental disabilities. Sponsored by the
RRTC Consortium on Aging and Developmental Disabilities. SEND: Aging/DD
Clearinghouse, 159 Carroll Hall, The University of Akron, Akron, OH 44325-5007.
INFO: Ruth Roberts, 800-538-6544. Entered: 12/3/94.
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44 - REPORT: AGING AND DEVELOPMENTAL DISABILITIES: CHALLENGES FOR THE 1990s.
PROCEEDINGS OF THE BOSTON ROUNDTABLE ON RESEARCH ISSUES AND APPLICATIONS
IN AGING AND DEVELOPMENTAL DISABILITIES. SEND: Matt Janicki, NYS Dept. of
MR/DD, 44 Holland Ave., Albany, NY 12229-0001. Entered: 12/4/94.
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45 - BOOK: OLDER ADULTS WITH DEVELOPMENTAL DISABILITIES; OPTIMIZING CHOICE
AND CHANGE, by Sutton, E., Factor, A., Hawkins, B., Heller, T., and Seltzer,
G. CONTENT: Collection of recent articles on issues in aging and developmental
disabilities written primarily by members of the RRTC Consortium on Aging
and Developmental Disabilities. SEND: Paul H. Brookes Publishing, Baltimore.
Entered: 12/4/94.
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46 - BOOK: A RESOURCE GUIDE FOR TRAINING SPECIALISTS IN AGING AND DEVELOPMENTAL
DISABILITIES. CONTENT: A research-based manual that provides a framework
for training at preservice and inservice levels. Includes instructor objectives,
training outline, training resources, and materials suitable for use as
handouts and overheads. SEND: RRTC Consortium on Aging and DD, through the
Institute on Life-Span Development and Gerontology, University of Akron,
179 Simmons Hall, Akron, OH 44325-4307. INFO: 800-838-6544, 216-972-7243.
Entered: 12/4/94.
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47 - RESEARCH BRIEFS: CONTENT: Executive summaries of the work of RRTC Consortium
on Aging and Developmental Disabilities at seven universities. Topics include
fiscal and program policy analysis; community service delivery; funding
for family-sized community living options; aging-related physical changes;
behavior capabilities assessment; intervention strategies; and others. SEND:
RRTC Consortium on Aging and DD, through the Institute on Life-Span Development
and Gerontology, University of Akron, 179 Simmons Hall, Akron, OH 44325-4307.
Entered: 12/4/94.
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48 - BOOK: AGING WITH SPINAL CORD INJURY, by Whiteneck, G. G., et al, 1992.
SEND: Demos Publications, 156 Fifth Ave., New York, NY 10010. Entered: 10/27/94.
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49 - BOOK: AGING WITH DISABILITY, by Trieschmann, R., 148 pages, 1987. CONTENT:
One of the first important publications that substantiated the aging with
disability issue. The book details that people with disabilities are now
experiencing conditions that combine the problems of aging with the issues
unique to a lifespan living with a specific disability. Chapters include:
The Fight for Life, Liberty and the Pursuit of Happiness; Health and Physical
Disability; Aging Bodies With Disabilities; Psychosocial and Environmental
Implications of Aging; and Implications for Research and Policy. SEND: Demos
Publications, 156 Fifth Ave., New York, NY 10010. Entered: 10/27/94.
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50 - ARTICLE: "HYDRO-AEROBICS PROVIDES PAINLESS EXERCISE FOR THE AGED"
in CONTINUING CARE, by McWaters, G., pages 22-23, December 1986. CONTENT:
This article excerpted from the book "Deep Water Exercise for Health
and Fitness" briefly summarizes exercises that can be done in the water.
Although the article is primarily aimed at older people, it has application
for people with disabilities. It points out deep water exercise is an excellent
physical activity. By immersing the body to neck level in deep water, the
joints and muscles are completely relieved of the pressure and stress caused
by normal activity. The hydrotherapy of the water in motion stimulates and
soothes the muscles, reducing pain and fatigue. The article makes a case
for using a lightweight buoyant vest, such as the Wet Vest, a neoprene and
Lycra outfit that allows wearers to keep their heads above the water with
the body inclined slightly forward in a running position while exercising.
While land exercise can be painful, water exercises relax muscles. Entered:
9/29/94.
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51 - REPORT: AGING AND CEREBRAL PALSY: PATHWAYS TO SUCCESSFUL AGING A NATIONAL
ACTION PLAN - A REPORT OF THE TASK GROUP ON AGING AND CEREBRAL PALSY, by
Overeynder, J.C., Janicki, M.P., & Turk, M.A. (eds.), 37 pages, February
1994. CONTENT: This report summarizes recommendations of a national invitational
colloquium on aging and cerebral palsy held in conjunction with the Annual
Meeting of UCPA, Inc., in Alexandria, VA, in April, 1993. It details some
changes in physical functioning people with CP are experiencing, age-related
changes that seemed to occur earlier in them than in their friends without
disabilities. Recommendations include: establishing a National Task Force
to oversee the implementation of colloquium recommendations; designing and
promoting the implementation of a health and wellness agenda that describes
means to assure full access to existing programs and emphasizes independent
living, self-advocacy and optimal functioning; stimulating gender-specific
research; promoting best practice guidelines for prevention and intervention
methods; researching lifelong impact of early childhood intervention strategies;
establishing a nation-wide information and referral network; developing
and disseminating educational materials for people with CCP as well as health
providers; advocating for public policy changes; establishing linkages among
organizations and stimulating them to address the needs of older persons
with CP; and refining the definition of CP to include the concept that age
associated changes may affect the functional status of people who have CP.
Although focused on people with cerebral palsy, many parts of the report
are relevant to cross-disability issues. SEND: New York State Developmental
Disabilities Planning Council, 155 Washington Avenue, Albany, NY 12229.
Entered: 9/29/94.
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52 - BOOK: HANDBOOK ON THE LATE EFFECTS OF POLIOMYELITIS FOR PHYSICIANS
AND SURVIVORS. CONTENT: Covers the basic information about the late effects
of polio. COST: $6.75. SEND: International Polio Network, 5100 Oakland Avenue,
#206, Saint Louis, Missouri 63110. INFO: 314-534-0475. Entered: 9/30/94.
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53 - NEWSLETTER: POLIO NETWORK NEWS. 12 pages. CONTENT: A quarterly newsletter
which keeps polio survivors and the network informed about issues relating
to polio and its late effects. A sample copy of "Polio Network News"
is available upon request. Five back issues of "Polio Network News"
are available for $3 each. COST: $12.00 annual subscription for survivors,
$3 back issues. SEND: International Polio Network, 5100 Oakland Avenue,
#206, St. Louis, Missouri 63110. INFO: 314-534-0475. Entered: 9/30/94.
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54 - NEWSLETTER: POST-POLIO DIRECTORY. CONTENT: Lists clinics, health professionals,
and self-help groups. COST: $3 for survivors. SEND: International Polio
Network, 5100 Oakland Avenue, #206, St. Louis, Missouri 63110. INFO: 314-534-0475.
Entered: 9/30/94.
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55 - NEWSLETTER: POLIO NETWORK NEWS, INTERNATIONAL POLIO NETWORK, Vol. 7,
No. 3., 12 pages, Summer 1991. CONTENT: Focuses on the subject of exercise
for polio survivors. Two articles "Suggestions for Exercise" and
"Non-Fatiguing General Conditioning Exercise Program" give specific
suggestions. COST: $12.00 subscription for survivors, $3 back issues. SEND:
International Polio Network, 5100 Oakland Avenue, #206, St. Louis, Missouri
63110. Entered: 10/29/94.
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56 - RTC: RESEARCH AND TRAINING CENTER CONSORTIUM ON AGING AND DEVELOPMENTAL
DISABILITIES. FOCUS: Conducts research, training, and information dissemination.
SEND: University Affiliated Cincinnati Center for Developmental Disorders,
3300 Elland Ave., Cincinnati, OH 45229. INFO: 513-559-4958, Esther Lee Pederson
and Tom Lottman. Entered: 12/3/94.
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57 - BOOK: PEP UP YOUR LIFE: A FITNESS BOOK FOR MID-LIFE AND OLDER PERSONS,
32 pages, 4/94. CONTENT: Describes and illustrates an exercise program that
has been specifically prepared for older people. This daily routine takes
20-30 minutes. A number of the exercises can be performed from a chair or
a wheelchair. They are identified with the international symbol for access
(wheelchair). It appears many exercises can be performed from the sitting
position than are indicated by the international access sign. COST: Free.
SEND: Fulfillment, (EEO156), 601 E Street, N.W., Washington, DC 20049. Entered:
9/20/94.
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58 - BIBLIOGRAPHY: THE LATE EFFECTS OF POLIO, by Weiss, M.T., 13 pages.
CONTENT: A listing of articles and books related to the late effects of
polio. COST: $.52 in postage on a self-addressed business envelope. SEND:
International Polio Network, G.I.N.I., 5100 Oakland Ave., #206, St. Louis,
MO 63110-1406. Entered: 9/20/94.
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59 - AUDIO CASSETTES: WORKSHOPS FROM A CONFERENCE ON: MEETING THE CHALLENGE
OF AGING WITH A DISABILITY; LESSONS LEARNED FROM POST POLIO AND STROKE,
HELD IN MARCH 1993, LONG BEACH, CA (See List #16). CONTENT: Tapes available
from 15 different workshops. Send or call for order information. COST: Individual
audio cassettes $8.50, full set $99 (includes binder), plus CA sales tax
8.25%. Shipping $1.50 for first tape and $1 for each additional tape to
a maximum of $7. SEND: Master Duplicators, 11042 Bettes Pl., Garden Grove,
CA 92640. INFO: 714-530-1838. Entered: 10/25/94.
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60 - BOOK: AGING WELL: THE LIFE PLAN FOR HEALTH AND VITALITY IN YOUR LATER
YEARS, by Fries, J. F., 1988. PUBLISHED BY: Addison-Wesley, Menlo Park,
CA. Entered: 9/20/94.
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61 - BOOK: COMPLETE GUIDE TO MEDICAL TESTS, by Griffith, H.W., 1988. PUBLISHED
BY: Fisher Books, Tucson, AZ. Entered: 9/20/94.
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62 - BOOK: HEALTHWISE FOR LIFE; MEDICAL SELF-CARE FOR HEALTHY AGING, Mettler,
M., & Kemper D. W., 350 pages, 1992. CONTENT: Includes basic guidelines
on how to recognize and cope with 115 of the most common health problems
facing older adults. Guidelines are based on medical information provided
by physicians, nurses, pharmacists, physical therapists and other health
professionals. The book is divided into five sections: what you need to
know in order to be a wise medical consumer; self-care for health problems;
staying healthy and independent (tips and techniques for fitness, nutrition,
stress management, mental wellness and staying independent); care giver's
guide; and self-care resources (managing medication and what you need to
have on hand to cope with health problems). SEND: Healthwise, Inc., P. O.
Box 1989, Boise, Idaho 83701. INFO: 208-345-1161, FAX 208-345-1897. Entered:
9/20/94.
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63 - BOOK: THE ESSENTIAL GUIDE TO PRESCRIPTION DRUGS 1992: EVERYTHING YOU
NEED TO KNOW FOR SAFE DRUG USE, 1992. PUBLISHED BY: Harper Collins Publishers,
New York, NY. Entered: 9/20/94.
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64 - BOOK: THE WELLNESS BOOK: THE COMPREHENSIVE GUIDE TO MAINTAINING HEALTH
AND TREATING STRESS RELATED ILLNESS, by Benson, H., Stuart, E., et al.PUBLISHED
BY: Carol Publishing Group, Secaucus, NJ. Entered: 9/20/94.
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65 - BOOK: AGING AND DISABILITIES: SEEKING COMMON GROUND, 204 pages. CONTENT:
Addresses the needs and interests of younger and older adults with disabilities.
COST: $13,95, plus $2 shipping. SEND: Baywood Publishing Co. Inc., 26 Austin
Ave., Amityville, NY 11070. INFO: 516-691-1270. Entered: 9/20/94.
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66 - AUDIO CASSETTE: SEATWORKS, by Gober, B., 30 minutes, 1987. CONTENT:
A muscle workout for seated individuals designed to accommodate a wide range
of ages and capabilities. Can generate a pulse rate near one's target zone.
Can generate an aerobic pulse rate or individuals can participate at their
own pace and level of ability. The unique aspect of this tape is different
bands can be chosen depending on the age and capability of the participant.
For example, those who cannot use their legs can choose only the bands that
involve upper extremity movements. SEND: Kimbo Educations, Box 477, Long
Branch, NJ 07740. INFO: 800-631-2187. Entered: 9/20/94.
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67 - ARTICLE: THE LIMITS OF SELF-CARE IN GENERATIONS, by Vickery, D.M.,
& Levinson, A., pages 53-56, Fall 1993. CONTENT: Discusses some of the
limits of self-care. Entered: 11/6/94.
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68 - AUDIO CASSETTE: TURNING 35 AND SOMETIMES FEELING 65!, 90 minutes, 4/30/94
- NCIL Annual Meeting. CONTENT: Featuring June Kailes, disability policy
consultant, and Margaret A. Turk, M.D., associate professor of physical
medicine and rehab. SUNY Health Science Center, Syracuse, NY, addressing
audience at the National Council on Independent Living's annual meeting.
The tape quality is good except for portions that deal with audience comments
and questions. These comments are hard to hear as there was not a microphone
for the audience. COST: $7. SEND: June Isaacson Kailes, Disability Policy
Consultant, 6201 Ocean Front Walk, Suite 2, Playa del Rey, CA 90293-7556.
INFO: 310-821-7080, 310-827-0269 FAX. Entered: 6/30/94.
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69 - AUDIO CASSETTE: AGING WITH DISABILITY - ADDRESS TO USC MEDICAL STUDENTS.
4/245/94. CONTENT: Lecture and discussion with June Isaacson Kailes, disability
policy consultant, and Laura Mosqueda. COST: $7. SEND: June Isaacson Kailes,
Disability Policy Consultant, 6201 Ocean Front Walk, Suite 2, Playa del
Rey, CA 90293-7556. INFO: 310-821-7080, 310-827-0269 FAX. Entered: 9/30/94.
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70 - BOOK: AGING WITH A LIFELONG PHYSICAL DISABILITY: A SELF-HELP GUIDE,
75 pages, 1992. CONTENT: Guide covers what helps people with disabilities
age well; needs and strategies; and provides lists of: self-help publications,
audio-visual material, and product and equipment manufacturers and suppliers.
The appendices include presentations from a seminar on aging with life-long
disability and includes papers on: The Aging Process and Its Effect on Body
Systems; Coping with Change; Consumer and Caregiver Needs; Enhancing Independence;
and a reference reading list. SEND: Ontario Federation for Cerebral Palsy,
1020 Lawrence Ave. W, Suite 303, Toronto, Ontario, Canada M6A1C8. Entered:
12/12/94.
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71 - ARTICLE: PHYSICAL FITNESS: THE IMPORTANCE OF STRETCHING, IN ACTION
DIGEST, Pages 8 & 9, Fall 1993. CONTENT: Suggests six stretching routines,
for people who use wheelchairs, that concentrate on the wrist, elbow, shoulders,
back and chest. The sample exercise routine includes three types of stretching
for the wrist and arms and another three for the back and chest. Entered:
12/12/94.
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72 - REGISTRY: NEW ENGLAND INDEX: INFORMATION ON DISABILITIES EXCHANGE,
1988. CONTENT: The Physician Registry is a computerized directory of physicians
interested in serving people with developmental disabilities and special
health care needs. Specialty areas include: primary care, psychology, gynecology,
orthopedics, neurology, ophthalmology, and others. Index includes providers
who have experience treating people with developmental disabilities. The
Registry can be used by people with disabilities, family members, case managers
and service providers, physicians, other health providers, and direct service
providers. This computerized registry includes office accessibility, location,
type of insurance, and particular disability experience. No lists are printed;
rather, callers are recontacted with names and phone numbers of as many
matches as possible. Annual requests for information review and a dated
signature from each physician ensure Registry data is as up-to-date and
accurate as possible. COST: Free. SEND: New England INDEX Shriver Center
UAB, 200 Trapelo Road, Waltham, MA 02154. INFO: 800-642-0249 V/TTY (New
England), 617-642-0248, FAX: 617-642-0122. Hours: 8:30 A.M. to 4:30 P.M.
EST, Mon-Fri. Entered: 12/12/94.
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73 - RTC: REHABILITATION RESEARCH AND TRAINING CENTER IN SECONDARY COMPLICATIONS
IN SPINAL CORD INJURY, 1982. FOCUS: To develop and disseminate rehabilitation
techniques and approaches used to prevent and treat the secondary complications
associated with spinal cord injury. A "Spinal Cord Injury Audiovisuals
and Publications" list is available upon request. SEND: The RTC Training
Office, UAB Spain Rehabilitation Center, 1717 6th Ave. S. Birmingham, AL
35233-7330. Entered: 12/12/94.
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74 - ARTICLE: OSTEOPOROSIS: WHAT ARE THE RISKS FOR WOMEN WITH DISABILITIES?
IN THE RESOURCEFUL WOMAN, by Whiting, P. S., & Kirschner, K.L., pages
2 & 3, Winter 1983, Vol. 2, Issue 1. CONTENT: Reviews what is osteoporosis
and examines the higher risk for women whose disabilities have resulted
from trauma such as spinal cord injury or a stroke. SEND: Director, Education
and Training Center, Rehabilitation Institute of Chicago, 345 East Superior
Street, Chicago, IL 60611. INFO: 312-908-4744.
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75 - RESOURCE: HEALTH RESOURCE CENTER FOR WOMEN WITH DISABILITIES AT THE
REHABILITATION INSTITUTE OF CHICAGO. FOCUS: A program where women with disabilities
work in collaboration with hospital staff to design and deliver health services
for women with disabilities. The goal of the center is to empower women
with disabilities to practice self-determination in achieving emotional
and physical wellness. To meet this goal, the Center provides accessible
medical services, conducts research in disabled women's health issues, and
offers educational resources for women with disabilities and health care
professionals. Accessible medical services are offered for: consultative
pregnancy services, mammogram referrals, pelvic exams, family planning/contraceptive
services, preventative healthcare counseling and psychological services.
INFO: Kristy Kirschner, M.D., Medical Director, Judy Panko Reis, Administrative
Director, Rehabilitation Institute of Chicago, 345 East Superior Street,
Chicago, IL 60611. 312-908-4744. To make an appointment, call 312-908-6066
or 1-800-345-REHAB. Entered: 12/12/94.
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76 - BOOK: HEALING THE BLUES: DRUG-FREE PSYCHOTHERAPY FOR DEPRESSION, by
Nudelman, D., & Willingham, D., 1994. CONTENT: An account by an individual
and the therapist, written in alternating chapters by both, it reads like
a novel and demystifies the therapy process. The individual is a survivor
of polio who is dealing with post-polio syndrome. COST: $22.00 (California
residents add sales tax). Include $2.25 for one copy, plus $4.75 for each
additional copy for shipping. SEND: Boxwood Press, 183 Ocean View Blvd.,
Pacific Grove, CA 93950. INFO: 408-375-9110, 408-375-0430 FAX. Entered:
12/12/94.
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77 - BOOK: STROKE SURVIVORS, by Berquist, W. H., McLean, R. & Kobylinski,
B.A., 250 pages, 1994. CONTENT: First-hand account of the experience of
having a stroke and the process of recovery, based on one personal account
and an extensive three-year study of 70 stroke survivors. COST: $24.00.
Shipping: $50.00 and under, add $4.00; $50.01-$75.00 add $5.00; $75.01-$100.00,
add $6.00; $400.01-$150.00, add $7.00; over $150.00, add $8.00. SEND: Ableforce,
84 Pilgrim Way, San Rafael, CA 94903. INFO: 415-492-0171 V/FAX. Entered:
12/12/94.
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78 - ARTICLE: MOVE THOSE MUSCLES! IN PARAPLEGIA NEWS, by Sieg, S., pages
14-20, February, 1994. CONTENT: A strong case is made for people with disabilities
improving their health if they perform some type of cardiovascular exercise
of moderate intensity every other day. Recommendations are made regarding
how to start an exercise program, find a health club and a trainer. Includes
listing of exercise physical fitness videos and equipment designed for people
with disabilities. Entered: 12/12/94.
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79 - RESOURCE: MARIANJOY REHABILITATION HOSPITAL'S HEALTH AND FITNESS CENTER.
FOCUS: Developed to meet the needs of people with disabilities who would
benefit from regular cardiovascular and resistance-training exercise. Specialized
equipment includes treadmills, Airdyn bicycles, upper-body exercisers, a
Versa-climber, Stairmasters, Nordic Track Skier, pulleys, weight stations
(Universal Paragym, Versatrainer and hand weights). Facilities include accessible
showers, bathrooms and formal exercise educational classes. INFO: 26 West
171 Roosevelt Rd., Wheaton, IL 60187 (32 miles west of Chicago). 708-462-4148.
Entered: 12/12/94.
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80 - ARTICLE: HEALTH SPAS - CAN THEY SLOW THE PROGRESS OF DISABILITY? (WHAT
CAN WE LEARN FROM EUROPEAN HOLISTIC PROGRAMS?). IN ACCENT ON LIVING, by
Roller, S., Spring 1994. CONTENT: Details what European health spas have
to offer people with disabilities and suggests this model could be adopted
in this country and something insurance carriers should cover as a way of
assisting people in preventing premature aging. Entered: 12/12/94.
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81 - VIDEO: THE SMILE PROGRAM: A LOW INTENSITY PHYSICAL ACTIVITY PROGRAM
FOR OLDER ADULTS, by Hickey, T., Walf, F., Robbins, L., Wagner, N., &
Harik, W., 41:30 minutes, 1992, University of Michigan, Ann Arbor, Michigan.
CONTENT: Program is demonstrated by older people of varying abilities, including
a wheelchair user. The program consists of 41 exercise movements and was
developed especially for older adults with limited mobility due to disability;
however, it certainly can prove useful to younger people with disabilities.
Seated options are provided for almost all exercise movements demonstrated
in a standing position. Exercises can be done using a sturdy chair with
a high back that provides a good hand grip, or a wheelchair. In the video
approximately half of the SMILE exercises are performed while seated. The
program consists of six separate sequences: warm up exercises, upper body
exercises, lower body exercise, large body movements, cool down for the
upper body and cool down for the lower and full body. COST: Videotape $20.00;
Participant booklet $10.00; handling cost $5.00. Michigan residents add
sales tax. SEND: SMILE Program, School of Public Health, Department of HB/HE,
1420 Washington Heights, Ann Arbor, MI 48019-2029. INFO: 313-747-0212 (Tom
Hickey, Dr. BH). Entered: 12/12/94.
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82 - VIDEO: FALLS AND RECOVERY FROM THE FLOOR, by Chrisman, D., 21.5 minutes.
CONTENT: Addresses falls and recovery through discussion and demonstration
of various methods to safely approach the floor and rise from the floor
so that emergency situations will be less traumatic. COST: $38.00 including
postage. Entered: 12/12/94.
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83 - BOOK: SITTING PRETTY: A CHAIR EXERCISE PROGRAM FOR THE OLDER ADULT,
by Zercher, 28 pages, 1993. CONTENT: Sitting exercises for upper body, hands,
middle body, lower body and some standing exercises, as well as guidelines
for deep breathing and good posture. COST: $5.00, plus $3.00 shipping. SEND:
The Shepherd's Center, 5200 Oak Street, Kansas City, MO 64112. Entered:
12/12/94.
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84 - VIDEO: FITNESS FOR THE BEGINNER. CONTENT: Gives people with physical
disabilities an opportunity to improve fitness levels at home. SEND: Canadian
Wheelchair Sports Association, 212-1600 James Naismath Drive, Gloucester,
Ontario K1B5N4, Canada. INFO: 613-748-5685. Entered: 12/12/94.
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85 - VIDEO: FOREVER FIT, Hartman, C., 30 minutes. CONTENT: Designed to improve
muscle strength, circulation, coordination, and flexibility. All exercises
are performed from a chair. A special selection provides relaxation tips
for relieving stress. COST: $29.95 plus $3.00 shipping. SEND: Forever Fit,
2545 Westchester Road, Toledo, OH 43615. INFO: 419-531-4865. Entered: 12/12/94,
Revised 3/31/95.
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86 - VIDEO: MS WHEELCHAIR WORKOUT, 30 minutes. CONTENT: Includes a variety
of exercises designed to improve balance, coordination, flexibility, and
strength. Demonstrates exercise adaptations for people with MS but may be
beneficial to others with extremity weakness as well. The program is divided
into a section of warm-up exercises, a vigorous calisthenics program, and
a relaxing cool-down period. COST: $15.00 per tape, check payable to: NYC
Chapter, National MS Society. SEND: New York City Chapter, National Multiple
Sclerosis (MS) Society, 30 West 26th Street, 9th Floor, New York, NY 10010-2094.
INFO: 212-463-7787. Entered: 12/12/94.
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87 - VIDEO: NANCY'S SPECIAL WORKOUT FOR THE PHYSICALLY CHALLENGED, by Sebring,
N.J. CONTENT: Created by a registered occupational therapist, this tape's
aerobic program begins with a warm-up, moves to a challenging aerobic segment,
and ends with a cool-down period, all set to original upbeat music. Appropriate
for those with MS, muscular dystrophy, cerebral palsy, spina bifida, amputations,
blindness, mental retardation, spinal-cord injuries, head injuries, and
other physical disabilities. SEND: Nancy J. Sebring, O.T.R., Nancy's Special
Workout, P. O. Box 2914, Southfield, MI 48037-2914. Entered: 12/12/94.
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88 - VIDEO: THERACISE, 23 minutes. CONTENT: Intended for people with upper-extremity
disability. Separate exercise segments offer instruction in passive range-of-motion,
self-range-of-motion, active range-of-motion, and strengthening. A modification
sheet allows users to tailor the program to individual needs. SEND: Theracise,
Inc., P.O. Box 9100, Unit 107, Newton Center, MA 02159. INFO: 617-332-6160.
Entered: 12/12/94.
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89- VIDEO: WHEELCHAIR AEROBICS, Hodges, C.C., 30 minutes. CONTENT: Features
routines for neck, arms, shoulders, and trunk. Designed to help maintain
the cardiovascular system, the exercises are performed by people with various
disabilities. Elastic bands made for workouts are demonstrated and may be
purchased in conjunction with the video. Useful for persons just getting
started on a regular exercise routine. COST: $39.95. SEND: A/V Health Services,
Inc., P. O. Box 20271, Roanoke, VA 24018-0028. INFO: 703-389-4330 V/FAX.
Entered: 12/12/94.
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90 - VIDEO: WHEELERCISE, Beginner - 10 minutes, Advanced - 20 minutes. CONTENT:
Beginner and advanced workout for upper-body strengthening. Designed to
increase cardiovascular fitness level and joint flexibility. The video works
on shoulder depressions; triceps; biceps; medial-lateral and anterior-posterior
sitting balance; rib isolation all the way down to the fingers; and wrists
with wrist rolls. COST: $24.95 + $2.50 shipping and handling (NJ residents
must add sales tax). SEND: Maura Productions, Inc., P. O. Box 723, Butler,
NJ 07405. INFO: 212-467-6715. Entered: 12/12/94.
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91 - VIDEO: THE WORKOUT, Asburgh, L., & Bobbitt, L, 50 minutes. CONTENT:
Aerobic exercise program for use in wheelchair for people with spinal cord
injury or amputees. COST: $15.00. SEND: Dallas Rehab Institute, 9713 Harry
Hines Avenue, Dallas, TX 75220-5441. Entered: 12/12/94.
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92 - VIDEO: KEEP ON MOVING! Sneiderman, C., 55 minutes. CONTENT: Focuses
on daily range of motion program for the person at home. Includes two exercise
programs -one in a supine position and the second in a wheelchair. Includes
an interview with a person with SCI. COST: $79.00. SEND: Dolcar, Inc., 94
Pond Cr., Glastonbury, CT 06033. INFO: 203-659-2475. Entered: 12/12/94.
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93 - RTC: REHABILITATION RESEARCH AND TRAINING CENTER ON AGING WITH A DISABILITY.
FOCUS: This RTC is a collaborative effort at Rancho Los Amigos Medical Center
and the University of Southern California. The purposes of the Center are
1) to conduct research in our problem area, 2) to train others about findings
in this area as well as how to conduct rehabilitation research, and 3) to
disseminate information to consumers and professionals. RESEARCH PROGRAM:
Specific research projects are conducted to investigate problems people
face as they age with a disability and to investigate problems older people
face who are disabled. In most instances, the research populations include
people with post-polio, rheumatoid arthritis, cerebral palsy and stroke.
The following projects are under way: A Naturalistic Study of the Life Course
of Disability; Identifying and Treating Late-Life Complications of Weakness;
Evaluating Residential Care Facilities as Resources for Older Disabled Persons;
Use of Technology Services to Maintain Employment Among People Aging with
a Disability; A Study of Policy Barriers for Improving Access to Assistive
Technology Services; The Role of Consumer Training to Enhance In-Home Supportive
Services. TRAINING PROGRAM: Training is directed towards improving the knowledge
and skills of present and future health and allied health professionals
as well as consumers, family members, rehabilitation and aging agency personnel
and policy makers. A variety of training projects are used, including: residencies
and internships, RRTC-sponsored conferences, presentations at national conferences,
and publication of articles and chapters. The following information can
be requested: research reports as they become available, training events
for health professionals, training events for consumers or families, consumer
information, information about services, or adding a name to mailing list.
SEND: Rehabilitation Research and Training Center, Rancho Los Amigos Medical
Center, 7601 East Imperial Highway, Downey, CA 90242. INFO: 310-940-7402.
Entered: 12/22/94.
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94 - BOOK: PREVENTING SECONDARY CONDITIONS ASSOCIATED WITH SPINA BIFIDA
OR CEREBRAL PALSY: PROCEEDINGS AND RECOMMENDATIONS OF A SYMPOSIUM, Lollar,
D., 144 pages, 1994. CONTENT: The proceedings identify conditions likely
to occur over time in people who have spina bifida or cerebral palsy. The
book summarizes major preventative interventions possible for people with
these disabilities and provide evidence that these prospective activities
are helpful. The recommendations were written for people with spin bifida
or cerebral palsy, as well as parents and providers. SEND: Spina Bifida
Association of America, 4590 Mac Arthur Blvd., N.W., Suite 250, Washington,
DC 20007-4226. Entered: 11/25/94.
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95 - BOOK: STRETCH & STRENGTHEN, Anderson, B. & Bornell, D.G. CONTENT:
This book instructs people with disabilities and older people in simple
stretch and strengthening exercises. The strengthening exercises are done
with an Iso-Band (circular elastic band with tubular handles). COST: $12.45
each book with Iso-band (Item #5000/5001) + $3.50 shipping and handling;
$6.95 each book (Item #5000); $5.50 each Iso-band (Item #5001) SEND: Stretching,
Inc., P. O. Box 767, Palmer Lake, CO 80133. INFO: 1-800-333-1307. Entered:
12/28/94.
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96 - VIDEO: STRETCHING, THE VIDEO (available in Spanish), Anderson, B.J.,
57 minutes. CONTENT: Offers people a variety of daily stretching with a
simple, safe format. Video was not created for people with disabilities
but is an excellent video for understanding the importance of stretching
and how to stretch safely. Organized in six slowly paced sections: a brief
introduction; stretches for the neck and back; then legs and hips; followed
by stretches for the feet; and then arms and shoulders. The tape concludes
with a 14-minute overall series of stretches for everyday fitness or for
a specific sport or activity. People need to choose and adapt what they're
able to do from the variety of stretches offered on the tape. COST: $29.25
+ $3.25 shipping and handling (English - item #5005, Spanish Item #5038).
Available in PAL European video format - item #5027. SEND: Stretching, Inc.,
P. O. Box 767, Palmer Lake, CO 80133. INFO: 1-800-333-1307. Entered: 12/28/94.
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97 - BOOK: STRETCHING, Anderson, B., 192 pages. CONTENT: This book, although
not specifically developed for people with disabilities, is one of the most
widely-used and recommended books on stretching. There are 192 illustrated
pages showing stretching methods and routines for each part of the body
and a host of specific activities. The book covers exercises for developing
strength, care of the back, and recommendations for sound nutrition. COST:
$12.00 + $3.75 shipping and handling (Item #2001). SEND: Stretching, Inc.,
P. O. Box 767, Palmer Lake, CO 80133. INFO: 1-800-333-1307. Entered: 12/28/94.
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98 - ARTICLE: AGING WITH A DISABILITY - EDUCATING MYSELF, IN GENERATIONS,
JOURNAL OF THE AMERICAN SOCIETY ON AGING, Kailes, J., 3 pages, Winter 1992,
Vol. XVI, No.1. CONTENT: Personal experiences about the lack of general
information available about aging with a disability. Cites Trieschmann's
book, Aging with Disability (list #49) as a first step to identifying the
real problems facing people with disabilities who are middle-aged or nearing
retirement. Lists specific questions in key areas (research, prevention,
nutrition, and advocacy) which need answers.
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99 ARTICLE: CENTERS FOR INDEPENDENT LIVING, 9 pages, March 1994. CONTENT:
Offers good, clear definitions and explanations of what Centers for Independent
Living are and what they do. Information includes what makes CILs unique;
why CILs were created; locating a CIL; CILs impact and more. It is a useful
handout for public education and independent living philosophy training.
COST: $10.00, check payable to J. Kailes. SEND: June Isaacson Kailes, Disability
Policy Consultant, 6201 Ocean Front Walk, Suite 2, Playa Del Rey, California
90293-7556. INFO: 310-821-7080 V, 310-827-0269 FAX.
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100 - DIRECTORY: CENTERS FOR INDEPENDENT LIVING, Annually updated. COST:
$10.00. SEND: ILRU, 2323 Shepherd, Suite 1000, Houston, TX 77019. INFO:
713-520-0232 V, 713-520-5136 TTY. Entered: 1/4/95.
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101 - LISTSERVE: AGING WITH DISABILITY, Host: Kailes, J. FOCUS: An Internet
mailing list used to periodically distribute resources and information,
such as updates of this Resource List, related to aging with disability.
SEND: If you have access to Internet, e-mail send a message to jkailes@tsbbs02.tnet.com
asking to be placed on the aging with disability mailing list. You will
periodically receive e-mail related to aging with disability issues and
resources. Entered: 6/6/94.
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102 - RESOURCE GUIDE: AUDIO-VISUAL GUIDE: RESOURCES FOR GERONTOLOGY AND
GERIATRIC EDUCATION, 1991-92, Pacific Geriatric Education Center, 55 pages.
CONTENT: Lists and describes audio-visual works available on a large variety
of subjects including aging, disabilities, osteoporosis, and alternative
therapeutic programs. SEND: Geriatric Education Center, c/o Los Angeles
Resource Center, 3715 McClintock Ave., Los Angeles, CA 90089-0191. INFO:
213-740-8711. Entered: 2/1/95.
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103 - VIDEO: AGING (1), 60 minutes. From Audio-Visual Guide: Resources for
Gerontology and Geriatric Education, 1991-92. CONTENT: What happens to the
brain and mind during the aging process? Why do some people age yet retain
full mental capacity while others lose agility of the mind? This program
questions some of the long-held stereotypes about aging and the mind. It
explores the diseases of aging including stroke, Alzheimer's, and Parkinson's
disease. It points out these diseases are quite distinct from normal aging.
Viewers watch experiments to prove, even in old age, new brain connections
can be formed. Finally, the program focuses on the phenomenon most commonly
associated with older minds: the wisdom of the aged. SEND: PBS Video, 495
L'Enfant Plaza, SW, Washington, DC, 20024. INFO: 202-488-5000 OR 800-344-3337.
Entered: 2/1/95.
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104 - VIDEO: AGING (2), 26 minutes. From Audio-Visual Guide: Resources for
Gerontology and Geriatric Education, 1991-92. CONTENT: This program covers
the physical process of aging, examining the various body systems to see
how and why they change with age. It shows not all the changes in older
people are inevitable and some changes in the aging body can be slowed down
or reversed. SEND: Films for the Humanities and Sciences, P. O. Box 2053,
Princeton, NJ 08543-2053. INFO: 1-800-257-5126. Entered: 2/1/95.
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105 - VIDEO: THE BODY AGES, 25 minutes. From Audio-Visual Guide: Resources
for Gerontology and Geriatric Education, 1991-92. CONTENT: This program
demonstrates that aging is a natural process that need not hinder an active,
fulfilling lifestyle. SEND: Altshul Group Corporation, Health Division/930
Pitner Avenue, Evanston, Illinois 60202. INFO: 1-800-421-2363. Entered:
2/1/95.
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106 - FILMSTRIP OR SLIDES W/ CASSETTE: HUMAN DEVELOPMENT: SUCCESSFUL AGING,
1979. From Audio-Visual Guide: Resources for Gerontology and Geriatric Education,
1991-92. CONTENT: Successful aging my be a contradiction in terms since
old age is associated with poor health, poverty, loneliness, and a lack
of purpose. This series overturns many myths about aging and shows, through
gerontological research and interviews with people over 65, how successful
and rewarding life can be in, what our society demeaningly labeled, "the
twilight years". SEND: Concept Media, P. O. Box 19542, Irvine, CA 92714.
Entered: 2/1/95.
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107 - FILM: ACTING OUR AGE; A FILM ABOUT WOMEN GROWING OLD, 58 minutes.
From Audio-Visual Guide: Resources for Gerontology and Geriatric Education,
1991-92. CONTENT: This documentary presents an unprecedented contemporary
look at women and aging in America. Acting our Age introduces six women,
aged 65 to 75. Through their stories of personal struggle and triumph, the
film dispels the myths and challenges the stereotypes which have defined
the image of old women in American culture. As they speak openly about sexuality,
being alone, financial difficulties and dealing with death, their straight-forward
responses reconstruct our expectations about aging and provide insight into
the concerns and lives of "real" old women. SEND: Direct Cinema
Limited, P. O. Box 69799, Los Angeles, CA 90069-9976. INFO: 213-650-4700.
Entered: 2/1/95.
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108 - VIDEO: ARTHRITIS: THERAPY EXERCISES, 25 minutes. From Audio-Visual
Guide: Resources for Gerontology and Geriatric Education, 1991-92. CONTENT:
Presents exercises for seniors with arthritis experiencing the early stages
of restricted physical movement. It demonstrates proper stasis exercises
specifically designed to increase the flexibility of all body joints and
ranges of motion. The work contains close-ups which serve to facilitate
observation and integration of the subtle as well as gross movements. SEND:
University of Nevada at Las Vegas, 4505 Maryland Parkway, Las Vegas, NV
89102. INFO: 702-739-3453. Entered: 2/1/95.
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109 - VIDEO: LIVING WITH ARTHRITIS, 13 minutes. From Audio-Visual Guide:
Resources for Gerontology and Geriatric Education, 1991-92. CONTENT: This
video carefully depicts how a joint works and interacts with muscles, tendons,
ligaments, and bursae to the development of the two major forms of arthritis.
Presents a complete look at the problems and available treatments. Stresses
heat, exercise, rest, and medication (HERM) as the best therapy. Occupational
and physical therapies are included as well as a warning on "miracle"
cures. SEND: Milner-Fenwick, Inc., 2125 Greenspring Dr., Timonium, MD 20193.
INFO: 800-638-8652. Entered: 2/1/95.
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110 - VIDEO: HAVE YOU HEARD? 15 minutes. From Audio-Visual Guide: Resources
for Gerontology and Geriatric Education, 1991-92. CONTENT: Most of us take
hearing for granted but more than 15 million Americans, and almost 50% of
those over 65, experience some degree of hearing loss. This program provides
information about the proper identification, treatment, and possible correction
of hearing problems. SEND: HOST Project Director, 3438 Olney-Laytonsville
Rd., Olney, MD 20832. INFO: 301-775-6114. Entered: 2/1/95.
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111 - VIDEO: GET UP AND GO, 25 minutes. From Audio-Visual Guide: Resources
for Gerontology and Geriatric Education, 1991-92. CONTENT: Professionals
in Neurology, Physical Therapy, and Rehabilitation have worked together
to create a video designed specifically for older persons with Parkinson's
Disease. The work has been endorsed by the Parkinson's Disease Foundation,
focuses on the prevention of contractures and improvements in endurance
and muscle strength. The tape attempts to facilitate social interaction
among those performing the presented exercise routines. SEND: Health Tapes
Inc., P. O. Box 47196, Oak Park, MI 48237. INFO: 313-662-5100. Entered:
2/1/95.
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112 - VIDEO: CANINE COMPANIONS FOR INDEPENDENCE, 26 minutes. From Audio-Visual
Guide: Resources for Gerontology and Geriatric Education, 1991-92. CONTENT:
This video documents the incredible work of Canine Companions. This organization
breeds, trains, and places signal (or hearing-ear) dogs with the deaf and
hard of hearing; social dogs to visit nursing homes; and service dogs for
the physically challenged. SEND: Canine Companions for Independence, P.
O. Box 446, Santa Rosa, CA 95402. Entered: 2/1/95.
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113 - FACTSHEETS: RRTC SPINAL CORD INJURY INFORMATION SHEETS ON SPINAL CORD
INJURY: 1. Locating information about SCI - SCI Consumers, Contains a listing
of organizations, agencies, 800 numbers, and computer resources for individuals
with SCI and their caregivers. 2. Locating information about SCI -Professionals,
lists professional organizations, agencies, 800 numbers, and computer resources
for rehabilitation professionals. 3. Sexuality in males with spinal cord
injury - Discusses the physical and psychological changes that can occur
in a male's sexual functioning following SCI. Topics include sexual aids,
relationship issues, and counseling. For use by healthcare professionals
and consumers with understanding of SCI. 4. Understanding spinal cord injury
- Advanced presents a concise summary of the anatomy and physiology of a
spinal cord injury. Describes the neurological and functional classification
of SCI. Includes illustrations. 6. Personal care assistants -Offers guidelines
and ideas on employing and managing your PCA. Topics include advertising,
interviewing, and qualities to consider when selecting your PCA. Can be
used by rehabilitation service providers with their clients. SEND: To receive
one free copy - List title and number of InfoSheet you want to order; for
each requested InfoSheet, send a self-addressed stamped business envelope;
if requesting more than one InfoSheet, include the correct postage - each
InfoSheet requires a first class postage stamp; Send to: RRTC Training Office
- Rm 506, Dept. of Rehabilitation Medicine, 1717 6th Ave. S., Birmingham,
AL 35233-7330; InfoSheets that do not contain illustrations are available
electronically on ENABLE and Dimenet or can be uploaded to you via INTERNET.
Send INTERNET e-mail to: Lindsey@sun.rehabm.uab.edu. Entered 2/16/95.
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114 - BOOK: THE ARTHRITIS EXERCISE BOOK, by Krewer, S.E., 1981. CONTENT:
Describes a comprehensive program for controlling the effects of arthritis
while relieving pain. The exercises are designed to increase strength, flexibility,
and endurance for people who want to protect their joints while they exercise.
It is preventive to the extent it may delay the onset of osteoarthritis,
as well as therapeutic for those with mild to moderate rheumatoid arthritis.
COST: $8.95. SEND: Simon & Schuster, Attn: Mail Order Dept., 1230 Avenue
of the Americas, New York, NY 10020. Entered: 4/20/95.
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115 - ARTICLE: EXERCISE LIMITATIONS FOR QUADRIPLEGICS: ANAEROBIC TRAINING
METHODS CAN BENEFIT THE QUADRIPLEGIC ATHLETE IN SPORTS TN SPOKES, Vol. 10,
No.1, Skuldt, A., May/June 1984. CONTENT: Focuses on people who cannot use
large muscle and sustain elevated heart rates for 20 minutes. Points out
arm work produces less of an aerobic training effect on a body than leg
work due to smaller muscle mass being used. The anaerobic exercise sustained
heart rate is lower. During anaerobic exercise, lactic acid develops in
the muscles early and respiration rates are lower than aerobic exercise
respiratory rates. Competitive events usually pursued by quadriplegic athletes
last less than three minutes. Competitive events are short-burst, high-intensity
activities, training should be anaerobic. People with spinal cord injuries
at the T2 level or higher do not experience the same heart rate changes
with exercise as their nondisabled counterparts. Thus, the first training
tip offered is that keeping logs of time and distance are better for showing
positive effects over weeks of training than monitoring heart rate which
may remain unchanged. One tip involves allowing long rest periods between
exercise bouts to allow anaerobic energy sources within the muscles to be
replenished before exercise is resumed. This allows lactic acid buildup
(which does not occur as markedly with aerobic exercise) to dissipate and
thereby avoids heavy feelings of fatigue. Proper spacing of exercise bursts
helps in training the respiratory muscles properly. Since perspiration is
reduced to a small surface area for spinal cord-injured quadriplegics, another
tip involves the importance of sitting in the shade during long rest periods,
drinking fluids, and spraying the body with water to aid body heat dissipation.
Entered: 4/20/95.
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116 - ARTICLE: THE ROLE OF AEROBIC EXERCISE IN FAT LOSS, in Paraplegia News,
Gorman, D., et al, Vol. 38, No. 2., February, 1984. CONTENT: The article
clarifies basics: diet alone may result in weight loss but not fat loss
without an exercise program; to be aerobic, exercise must use large muscle
groups and raise the heart rate to 60-75% of maximum; and, for effective
fat loss, the exercise program must last a minimum of 20 minutes per day,
three days per week. Research with paraplegics indicates swimming, wheelchair
basketball, arm ergometry (pedaling stationary bike), and treadmill running
are effective ways to improve cardiovascular fitness and reduce body fat.
Listed activities which do not generally appear effective for this purpose
include archery, bowling, tennis, and several trademarked gym programs.
Entered: 4/20/95.
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117 - RESOURCE: COMPREHENSIVE EVALUATION CLINIC AT RANCHO LOS AMIGOS MEDICAL
CENTER, DOWNEY, CALIFORNIA. FOCUS: For people with aging and wellness concerns
related to disability, offers a comprehensive evaluation involving physical
and occupational therapy; social work psychology; neurology; audiology;
etc. Clinic is held Thursday mornings, plan for two consecutive visits.
INFO: 310-940-7402, ask for the Nurse Coordinator for the comprehensive
evaluation clinic. Entered: 5/5/95.
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118 - LISTSERV: POLIO LIST JOIN BY SENDING THE MESSAGE. CONTENT: Includes
hundreds of subscribers from all over the world who share information on
Post Polio Syndrome, drug therapies, new symptoms, ventilator use, and,
most important, a support network. Participants include Dr. Lair S. Halstead,
one of the best known polio doctors in the United States. SEND: SUBPOLIO
YOUR NAME to Listserv@sjuvm.stjohns.edu. Entered: 4/26/95.
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119 - WORLD WIDE WEB (WWW): POLIO PAGE, created by Tom Dempsey includes
current articles about Polio and new treatments. TO READ: the WWW Polio
Page, just log on to: http://eskimo.com/~dempt/polio.html. Entered: 4/26/95.
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120 - NEWSLETTER: RESOURCEFUL WOMAN: WOMEN WITH DISABILITIES STRIVING TOWARD
HEALTH AND SELF-DETERMINATION. CONTENT: Focuses on a variety of health and
self-determination issues for women with disabilities. SEND: Request to
be placed on the mailing list: The Health Resource Center for Women With
Disabilities, Rehabilitation Institute of Chicago, 345 East Superior Street,
Chicago, IL 60611. INFO: 312-908-7997. Entered: 4/13/95.
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121 - ARTICLE: BREAST CANCER IN DISABLED WOMEN: ARE THERE ALTERNATIVES TO
MAMMOGRAPHY? IN RESOURCEFUL WOMAN: WOMEN WITH DISABILITIES STRIVING TOWARD
HEALTH AND SELF DETERMINATION, Fall 1994, Volume 3, Issue 3, page 1. CONTENT:
Details newer technology available to accommodate women with limited mobility
but not widely available in most communities. Suggests steps women's disability-related
advocacy groups can take to acquire such equipment in a near or neighboring
community. Details difficulty women with disabilities have in terms of positioning.
Suggests important alternatives to
mammography for women who simply cannot sit or even use the accessible mammogram
equipment. SEND: The Health Resource Center for Women with Disabilities,
Rehabilitation Institute of Chicago, 345 East Superior Street, Chicago,
IL 60611. INFO: 312-908-7997. Entered: 4/13/95.
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122 - RTC: RESEARCH AND TRAINING CENTER ON AGING WITH SPINAL CORD INJURY.
FOCUS: Offers research and training activities and reports on their findings
regarding aging with spinal cord injury. SEND: Craig Hospital, RRTC on Aging
with Spinal Cord Injury, 3425 S. Clarkson, Englewood, CO 80110. INFO: 303-789-8220.
Entered: 9/9/95.
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123 - VIDEO: CHAIR JAZZ WITH MAURA CASEY: "SIT TO BE FIT," 35
minutes. CONTENT: Aerobic exercises, focuses on flexibility and endurance.
Consists of two workouts. 1) An aerobic workout performed from a chair,
consisting of warm-up, workout, and cool-down. 2) A body tone-up segment
utilizing the Theraband exerciser (included). This segment focuses on increasing
strength and tone of muscles. The instructor is a physical therapist with
Bachelor's degrees in physical therapy and biopsychology. COST: $24.95 +
$3.50 shipping and handling (NJ residents must add sales tax). INFO: 917-467-6715,
800-25-TAPES FAX. Entered: 4/12/95.
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124 - VIDEO: NUSTEP TOTAL BODY RECUMBENT STEPPER. CONTENT: Infomercial related
to a new piece of exercise equipment, NuStep, a recumbent bike with back-supporting
seat. Equipment sells for $1,895 plus shipping and is certainly not something
an individual could easily afford; however, it would be a piece of equipment
you would advocate a local health club purchase to benefit all members,
including people with disabilities. Specific features of the equipment helpful
to people with disabilities include: chair-height seat that makes getting
on and off easy, footplates with heel cups to hold feet firmly in place,
variable step-height is easy on the hips and knees, easy to read and use
computer display. SEND: LifePlus, Inc., 3770 Plaza Drive, Suite 1, Ann Arbor,
MI 48108. INFO: For a free video of the NuStep in use, call 1-800-322-2209.
Entered: 4/4/95.
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125 - ARTICLES: THE GOOD, THE BAD AND THE NON-EXISTENT and REHAB ROULETTE,
Kennedy, N.B.; ARE YOU IN THE RIGHT PLACE? Corbet, B., pp. 36 -43 in NEW
MOBILITY, Vol. 6, No. 26. CONTENT: A series of articles which detail the
ins and outs of rehabilitation (good rehab, bad rehab, and the difference
between an acute care hospital and a rehab hospital) in the 1990s. SEND:
New Mobility, P.O. Box 8987, Malibu, CA 90265-8987 Entered: 1/3/96.
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126 - ARTICLE: TREATING CHRONIC PAIN, in NEW MOBILITY, Jane, A., Vol. 6,
No. 26, pp 20-21. CONTENT: An overview of some of the recent alternative
treatments for pain that have been studied, used, and proven effective for
some. SEND: New Mobility, P.O. Box 8987, Malibu, CA 90265-8987. Entered:
1/3/96.
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127 - ARTICLE: PAST DUE: QUAD MOMS TALK ABOUT PREGNANCY, in NEW MOBILITY,
Dobbs, J., Vol. 6, No. 23, pp. 28-33. CONTENT: Mothers who are quadriplegic
talk about pregnancy. Includes bladder and bowel issues; labor and delivery;
and post-partum concerns. SEND: New Mobility, P.O. Box 8987, Malibu, CA
90265-8987. Entered: 1/3/96.
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128 - ARTICLE: CUSHIONS: SITTING PRETTY!, in NEW MOBILITY, Coghlan, J.,
Vol. 6, No. 23, pp. 58-60. CONTENT: Briefly details some of the ins and
outs of selecting the right wheelchair cushion. SEND: New Mobility, P.O.
Box 8987, Malibu, CA 90265-8987. Entered: 1/3/96.
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129 - ARTICLES: FITNESS: EXERCISE YOUR RIGHTS, Corbet, B., pp. 36-38, and
DOCTORS BE DAMNED, I NEED SOME EXERCISE, Bolt. B., p. 39, in NEW MOBILITY,
Vol. 5, No. 18. CONTENT: Details some of the issues related to exercise:
doing it right, options, resource organizations, publications, exercise
machine options, and exercise tapes. SEND: New Mobility, P.O. Box 8987,
Malibu, CA 90265-8987. Entered: 1/3/96.
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130 - ARTICLE: SKIN: STATE OF THE ART REPAIR, in NEW MOBILITY, Maddox, S.,
Vol. 5, No. 18, pp. 16-19. CONTENT: Reviews issues around skin destruction,
preventing pressure sores, and a speculative review of research that seeks
alternatives to the common practices of skin grafting and surgical flaps.
SEND: New Mobility, P.O. Box 8987, Malibu, CA 90265-8987. Entered: 1/3/96.
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131 - ARTICLES: PAIN and SCI PAIN: THE SURGICAL OPTION, in NEW MOBILITY,
Corbet, B., Vol. 6, No. 24, pp. 34-44. CONTENT: Pain and spinal cord injury.
Readers discuss pain from a personal perspective in terms of what aggravates
the pain, what helps the pain, and offer their own personal advice. The
second article covers the locus of pain and two surgical procedures that
are options for some: the DREZ and CA'DREZ. SEND: New Mobility, P.O. Box
8987, Malibu, CA 90265-8987. Entered: 1/3/96.
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132 - ARTICLE: BLADDER AND BOWEL OPTIONS, in NEW MOBILITY, Maddox, S., Vol.
6, No. 26, pp. 20-22. CONTENT: Discusses some of the new ways, means, and
procedures related to bladder and bowel management for people with spinal
cord injury. SEND: New Mobility, P.O. Box 8987, Malibu, CA 90265-8987. Entered:
1/3/96.
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133 - ARTICLE: FITNESS EQUIPMENT: A HEALTHY MARKET in NEW MOBILITY, Balgochian-Scalise,
M., Vol. 6, No. 26, pp. 50-51. CONTENT: Reviews some of the options and
resources of exercise equipment for people with disabilities. SEND: New
Mobility, P.O. Box 8987, Malibu, CA 90265-8987. Entered: 1/3/96.
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134 - FACT SHEET: LATEX (NATURAL RUBBER) ALLERGY IN SPINA BIFIDA PATIENTS,
in SPINA BIFIDA SPOTLIGHT, Meeropol, E. & Shaer, C., 1993. CONTENT:
Alerts the reader to the possibility of severe latex allergy for individuals
with spina bifida. For some, this allergy could be life-threatening. Recommends
some options for people at high risk. SEND: Spina Bifida Association of
America, 4590 Mac Arthur Blvd. N.W., Suite 250, Washington, DC 20007-4226.
INFO: 202-944-3285. Entered: 1/3/96.
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135 - BOOKLET: JOINT PROBLEMS, 20 pages. CONTENT: People with spinal cord
injury must deal with aging joints and muscles long before they reach their
60s and 70s - the years when most people face joint problems. Physically
active people with spinal cord injury often show joint pain and problems
about 15 years after their injuries. It appears their joints age well before
their bodies do. This booklet overviews some of the issues around the body's
joint problem areas; factors contributing to joint problems; prevention;
and tips and treatments including simple remedies, change in living space,
assistive technology, steroids, and surgery. The booklet touches on related
problems such as aging issues, carpal tunnel syndrome, heterotopic ossification,
osteoporosis, and suggests further readings. SEND: The Research and Training
Center on Independent Living, University of Kansas, 4089 Dole Center, Lawrence,
KS 66045-2930. COST: $2.50. Make check payable to RTC/IL. INFO: 913-864-4095.
Entered: 1/3/96
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136 - BOOKLET: SCI & AGING, 24 pages. CONTENT: An overview of spinal
cord injury and aging. Covers people with spinal cord injury aging differently;
issues related to aging and skin; muscles and bones; heart; lungs; urinary
system; gastrointestinal system; nervous system; immune system; medications;
and working with the medical system.Suggests further readings. SEND: The
Research and Training Center on Independent Living, University of Kansas,
4089 Dole Center, Lawrence, KS 66045-2930. COST: $2.50. INFO: 913-864-4095.
Entered: 1/3/96
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137 - NEWSLETTER: RESOURCEFUL WOMEN: WOMEN WITH DISABILITIES STRIVING TOWARD
HEALTH AND SELF-DETERMINATION, 8 pages. CONTENT: An information newsletter
for women with disabilities which details health issues and disability cultural
issues. SEND: Health Resource Center for Women with Disabilities, Rehabilitation
Institute of Chicago, 345 East Superior Street, Room 106, Chicago, IL 60611.
INFO: 312-908-7997. Entered: 1/3/96
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138 - ARTICLES: Rx FOR FITNESS, Part 1: Physical Disability need not - and
should not - mean physical inactivity, Part 2: Getting Ready to Exercise
& Part 3: Start Doin' It! in PARAPLEGIA NEWS, Keyes, A.M., & Lockette,
K.F., Vol. 49, No. 4, pp. 48-54; No. 5, pp. 10-16 & No. 6, pp. 442-29.
CONTENT: A three-part series of articles based on information in the new
book "Conditioning With Physical Disabilities." Part 1 reviews
some medical aspects of spinal cord injury related to exercise; Part 2:
how to start an exercise program; and Part 3 reviews some routines and options
and includes a list of exercise/fitness videos designed for people with
spinal cord injury. SEND: PVA Publications, 2111 East Highland Ave., Suite
180, Phoenix, AZ 85016-4702. Entered: 2/14/96
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139 - REPORT: UNCERTAIN FUTURE - AGING AND CEREBRAL PALSY: CLINICAL CONCERNS,
Turk, M. A.., Overeynder, J.C., & Janicki, M.P. (Eds.), Albany: The
New York State Developmental Disabilities Planning Council, June 1995, 68
pages. CONTENT: Report outlines questions needing further study and highlights
areas of clinical and personal concern that need attention. The report discusses
what is aging, what is cerebral palsy, and how aging affects people with
cerebral palsy. Clinical issues discussed include concerns related to changes
in mobility and functioning; pain; fatigue; osteoporosis; fractures; eating;
swallowing and dental concerns; and other concerns related to gastrointestinal;
urological; reproductive; sexuality; communication; and personal effectiveness.
SEND: New York State Developmental Disabilities Planning Council, 55 Washington
Ave., Albany, NY 12210. INFO: 518-432-8233. Entered: 1/3/96, Update 7/3/96
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140 - BOOKLET: CHRONIC PAIN MANAGEMENT, 1993. CONTENT: This booklet touches
on the prevalence of chronic pain among persons with disabilities. It outlines
management techniques offered by medical practitioners and presents information
for self-management of pain. SEND: The Research and Training Center on Independent
Living, University of Kansas, 4089 Dole Center, Lawrence, KS 66045-2930.
COST: $2.50. INFO: 913-864-4095. Entered: 1/3/96
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141 - BOOKLET: PRESSURE SORES, 1993. CONTENT: This booklet discusses management
and prevention of pressure sores. Material includes an assessment scale
for predicting risks of pressure sores. SEND: The Research and Training
Center on Independent Living, University of Kansas, 4089 Dole Center, Lawrence,
KS 66045-2930. COST: $2.50. INFO: 913-864-4095. Entered: 1/3/96
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142 - BOOKLET: URINARY TRACT INFECTIONS, 1993. CONTENT: This booklet discusses
how to cope with urinary tract problems. Material includes background information
on causes and strategies for managing urinary tract problems and complications.
A chart on warning signs of Autonomic Dysreflexia is included. SEND: The
Research and Training Center on Independent Living, University of Kansas,
4089 Dole Center, Lawrence, KS 66045-2930. COST: $2.50. INFO: 913-864-4095.
Entered: 1/3/96.
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143 - BOOKLET: CHRONIC FATIGUE, 1993. CONTENT: This booklet provides information
dealing with the topic of chronic fatigue among people with disabilities.
Includes tips on how to manage chronic fatigue and maintain maximum independence.
SEND: The Research and Training Center on Independent Living, University
of Kansas, 4089 Dole Center, Lawrence, KS 66045-2930. COST: $2.50. INFO:
913-864-4095. Entered: 1/3/96
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144 - BOOK: HEALTHWISE FOR LIFE: MEDICAL SELF-CARE FOR HEALTHY AGING, Metler,
N. & Kempler, W., Pub.: Healthwise, 1992, 380 pages. CONTENT: This book
includes a process to follow every time a health problem arises and an "Ask-the-Doctor"
checklist that helps an individual get the most out of a visit to the doctor.
Chapters on wise medical consumer; prevention and early detection; and your
home health center. Acts as a reference book and includes self-care information
for problems such as bone, muscle and joint; chest, lung and respiratory;
heart and circulation; digestive and urinary; diabetes and thyroid; headaches;
nervous system; eyes and seeing; ears and hearing; mouth, throat and dental
problems; skin, hair and nails; temperature control; women's and men's issues;
sexual health; and mental self-care. Other chapters focus on fitness; nutrition;
stress and relaxation; mental wellness; independence; a caregiver's guide;
and two chapters on self-care resources. The book includes basic guidelines
on how to recognize and cope with 115 of the most common health problems
facing older adults. SEND: Healthwise, Inc., P.O. Box 1989, Boise, ID 83701.
COST: $12.95. Entered: 1/3/96
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145 - CLINIC: SHEPHERD CENTER, Atlanta, GA, every third Tuesday. Call for
appointment. CONTENT: Gynecological clinic services for women with spinal
cord injuries and other disabilities staffed by Dr. Stephen Goldman and
Dr. John Pugh. In addition to preventative screening, the clinic offers
advice and treatment for a number of health issues such as menopause, serious
infections, and ovarian cysts. SEND: Shepherd Center, 2020 Peach Tree Road
NW, Atlanta, GA 30309. INFO: 404-350-7369. Entered: 3/28/96.
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146 - RESOURCE LIST: EXERCISE AND OLDER ADULTS, 9 pages. CONTENT: Resources
for promoting health and well-being for older people through exercise. SEND:
National Eldercare Institute on Health Promotion, American Association of
Retired Persons, 601 E Street, NW, Fifth Floor - B, Washington, DC 20049.
INFO: 202-434-2200. Entered: 1/3/96.
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147 - RESOURCE LIST: NUTRITION AND OLDER ADULTS, 6 pages. CONTENT: Organizational
resources for consumers and professionals for promoting good health through
nutrition. SEND: National Eldercare Institute on Health Promotion, American
Association of Retired Persons, 601 E Street, NW, Fifth Floor - B, Washington,
DC 20049. INFO: 202-434-2200. Entered: 1/3/96.
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148 - RESOURCE LIST: INJURY PREVENTION AND SAFETY FOR OLDER ADULTS, 9 pages.
CONTENT: Resources for developing and conducting programs on injury prevention
and safety for older people including areas of home safety; fall prevention;
fire prevention; and driver and pedestrian safety. SEND: National Eldercare
Institute on Health Promotion, American Association of Retired Persons,
601 E Street, NW, Fifth Floor - B, Washington, DC 20049. INFO: 202-434-2200.
Entered: 1/3/96.
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149 - ARTICLE: MISMANAGED CARE, in NEW MOBILITY, Corbet, B., Vol. 6, No.
25, pp. 46-48. CONTENT: Warnings regarding services for people with disabilities
under managed care. SEND: New Mobility, P.O. Box 8987, Malibu, CA 90265-8987.
Entered: 1/3/96.
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150 - ARTICLE: ANY CHOICE YOU WANT: AS LONG AS IT'S DEATH, Mailhot, A.,
in THE DISABILITY RAG & RESOURCE, Jan/Feb 1995, pp. 8-13. CONTENT: A
wake-up call regarding our health care in the future, how valuable will
we be seen as people with disabilities? What does our life cost? SEND: The
Disability Rag & ReSource, P.O. Box 145, Louisville, KY 40201. Entered:
1/4/96
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151 - LIVING WILLS - DO THEY MEAN WHAT WE THINK THEY MEAN, Powell, R., in
THE DISABILITY RAG & RESOURCE, Jan/Feb 1995, p. 14. CONTENT: Alerts
readers to some problems and loopholes regarding living wills. SEND: The
Disability Rag & ReSource, P.O. Box 145, Louisville, KY 40201. Entered:
1/4/96
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152 - TOO DISABLED TO BE DISABLED?, Bopp, J., & Avila, D., in THE DISABILITY
RAG & RESOURCE, Jan/Feb 1995, pp. 16-19. CONTENT: Deals with unconsciousness:
the ADA and the discriminatory denial of chronic care. SEND: The Disability
Rag & ReSource, P.O. Box 145, Louisville, KY 40201. Entered: 1/4/96
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153 - BOOKLET: VOICES OF DISABILITY: ACCESS TO HEALTH CARE IN RURAL AMERICA,
Pub. Nov. 1995 CONTENT: Examines how people with disabilities living in
rural areas use the current health care system, the problem they face in
assessing health care, and the strategies that have worked for them. Public
policy recommendations are also included. COST: Free. SEND: Center for Disability
Policy and Research, University of Washington, Box 358852, 146 N. Canal
St., Suite 313, Seattle WA 98103. INFO: (206) 658-7260, (206) 616-3135 FAX.
E-mail: CDPR@u.washington.edu Entered: 2/14/96
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154 - BOOKLET: MANAGED CARE: AN AARP GUIDE. CONTENT: Reviews and explains
managed care; the types and varieties of managed care plans including those
specifically designed for MediCare beneficiaries; and the pros and cons
of managed care. COST: Free. SEND: AARP, 601 E. Street, NW, Washington,
DC 20049 PHONE: (202) 434-2200 Entered: 2/14/96
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155 - BROCHURES: DEALING WITH PRESSURE SORES, UNDERSTANDING AUTONOMIC DYSREFLEXIA,
SIDE EFFECTS OF PSYCHIATRIC MEDICATIONS, HOW TO GET THE MOST OUT OF YOUR
HEALTH CARE, WOMEN AND SELF INJURY. Available in English, Spanish, Braille
and audio cassette. Order in multiples of 10 and allow 4 weeks for delivery.
CONTENT: A series of peer health brochures focusing on specific health issues
of interest to people with disabilities and those with chronic health conditions.
These brief brochures are written by and for people with disabilities. COST:
Free. INFO: (617) 593-7500. SEND: Access to Health, c/o Independent Living
Center of the North Shore (ILCNS), 583 Chestnut Street, Lynn, MA 01904.
Entered: 2/14/96
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156 - RESOURCE GUIDE: WOMEN AND SELF INJURY, RESOURCE DIRECTORY, 25 pages.
CONTENT: Includes discussion of self injury - an explanation and resources;
incest and childhood sexual abuse; multiple personality disorder; ritual
abuse and cults; men who have been sexually abused; trauma and dissociative
disorders; abuse by priests and clergy; depression; self esteem; dysfunctional
families; abuse by therapists; suicide; and psychiatric disabilities. COST:
Free. INFO: (617) 593-7500. SEND: The Women and Self Injury Project, c/o
Independent Living Center of the North Shore (ILCNS), 583 Chestnut Street,
Lynn, MA 01904. Entered: 2/14/96
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157 - MANUALS: MANUAL #1: PREVENTING AND MANAGING SECONDARY CONDITIONS EXPERIENCED
BY ADULTS WITH PHYSICAL DISABILITIES: A SELF-HELP PROBLEM SOLVING GUIDE.
Seekins, T., Clay, J., Kirchmyer, S., Ali, K., Murphy, K., Ravesloot, C.
Published: Revision 1990, 1991 Pages: 100. CONTENT: Manual focuses on approaches
to preventing or managing secondary disability. Presents general information
about secondary disabilities and self-help techniques for personal management
of weight, physical conditioning, and psychosocial problems such as depression.
Its focus is on self- management and personal responsibility for health.
Issues covered weight and nutrition; physical fitness; and personal control
topics (loss, grieving, adjustment to disability, depression, chronic pain,
and fatigue). Unique feature: In figuring ideal weight, assists user in
applying a disability filter which takes into account loss of muscle use.
Excellent detailed section on exercise with many tips for getting started
as well as staying out of trouble.
MANUAL #2: PREVENTING AND MANAGING SECONDARY CONDITIONS EXPERIENCED BY ADULTS
WITH PHYSICAL DISABILITIES: A WORKSHOP LEADER'S MANUAL. Seekins, T. 81 pages.
CONTENT: Leader's guide to accompany the program in Manual #1. Outlines
a series of eight workshops designed to address secondary disability prevention
including scripts covering content and methods to prompt discussion. Scripts
provide a standard but flexible format to adapt to the needs, interests,
and resources of a community. Suggestions are included for identifying and
recruiting local experts and consumer leaders to assist in conducting the
workshops.
MANUAL #3: DEVELOPING AND IMPLEMENTING A PROGRAM FOR PREVENTING AND MANAGING
SECONDARY CONDITIONS EXPERIENCED BY ADULTS WITH PHYSICAL DISABILITIES. SEND:
RTC: Rural, 52 Corbin, University of Montana, Missoula, Montana 59812. INFO:
406-243-5481. Entered: 9/21/95
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158 - QUESTIONNAIRE: CHECK YOUR HEALTH, CONSUMER SCREENING MANUAL IN FORMS,
Seekins, T. & Norris, K. CONTENT: A brief screening questionnaire intended
as a tool to help people with disabilities and service providers identify
risks for secondary conditions. Those who determine they are at risk can
then seek or be guided to appropriate information, support, and services
useful to maintain or improve their health. SEND: RTC: Rural, 52 Corbin,
University of Montana, Missoula, Montana 59812. INFO: 406-243-5481. Entered:
9/21/95
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159 - BOOKLET: STAYING HEALTHY IN THE '90s: WOMEN WITH DISABILITIES TALK
ABOUT HEALTH CARE Editor: Odette, F. Published: 1994, CONTENT: A collection
of stories and experiences of women with disabilities in dealing with the
health care system. Issues discussed include pregnancy; breast self-examinations;
pelvic examinations with positioning tips; lesbian health and disability;
culture and disability; menopause; and aging with disability. Other topics
include health bill of rights; risk and choices; you and your doctor; pain,
holistic medicine; and safe sex. COST: No charge for women with disabilities.
Agencies and organizations - $10 plus $3 postage and handling. (Canada -
call for conversion rate.) SEND: DAWN-DisAbled Women's Network (Toronto),
180 Dundas Street, W. 210, Toronto, Ontario, N5G178. Info: 416-598-2438
V, 416-598-5059 TTY. Entered: 9/21/95
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160 - BOOK: TABLE MANNERS: A GUIDE TO THE PELVIC EXAMINATION FOR DISABLED
WOMEN AND HEALTHCARE PROVIDERS. Ferreyra, F. & Hughes, K. June 1992,
3rd printing, 1991. CONTENT: Provides specific information regarding reproductive
health care with physical, visual, and hearing disabilities. Includes information
on alternative positioning for examination, transfer to the examination
table, and other specific considerations. COST: $1.50, make check payable
to Planned Parenthood Alameda/San Francisco or indicate type of credit card,
MasterCard or Visa, credit card number and expiration date. Credit card
purchases require an additional 3% charge, based on the total order. Sales
tax, appropriate to your county, applies only to California residents. SEND:
Sex Education for Disabled People, Planned Parenthood Alameda/San Francisco,
815 Eddy Street, San Francisco, CA 94109. INFO: 415-441-7858. Entered: 9/29/95
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161 - ARTICLE: "TAKING CARE OF YOUR MUSCLES" in ONE STEP AHEAD
-THE DISABILITY RESOURCE, Vol. 2, #14, September 1995, Second Opinion/Medical
Answers, pages 9-10 by Lauro Halstead, M.D. CONTENT: Reviews principles
for caring for muscles and strategies to prevent aches and pains. Discusses
muscle strain, micro-trauma (microscopic tears of muscle fibers, collagen
tissue or occasionally small blood vessels), and preventing muscle injury.
SEND: One Step Ahead-The Disability Resource P.O. Box 65766, Washington,
DC 20035, published monthly. Subscriptions are $12 per year. INFO: 800-386-5367
V/TTY, info@eka.com.
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162 - ARTICLES: "MIDLIFE CRIPDOM: GETTING FEWER MILES PER GALLON? (GOOD
NEWS, BAD NEWS, AND THE CURRENT STATE OF KNOWLEDGE)" in THE DISABILITY
RAG & RESOURCE, Kailes, J.I., VOL. 16, NO. 4, July/August 1995, pp.
1-18 "AGING AND CRIPDOM: NEW REALITIES, NEW CONCERNS AND A LOT OF NEW
QUESTIONS!" Reviews the multiplicity of issues, concerns, and new realities
surrounding aging with disability from the disability perspective. Given
the newly revised life expectancy statistics most people with disabilities
will live longer. "ADVOCATING FOR MORE THAN HEALTH REFORM?" Makes
the case people with disabilities need to make their needs known clearly,
assertively, and repeatedly in the areas of essential services and resources
including: education, prevention, research and public policy change. Suggests
some of the products and services needed: best practice guidelines and models,
health assessment evaluation guidelines, a national information and dissemination
network, health services, Americans with Disabilities Act compliance, and
a stronger role in health and wellness for independent living centers and
other disability-related organizations. "A FEW HORROR STORIES"
The advice and opinions for everyday conditions often are not put through
a "disability filter." Some this can be extremely problematic.
Many people with disabilities have a narrower margin of health than most
people. Delivery systems, with little or no disability-related expertise,
put some people with disabilities in peril. "CRIP SYMBOL HANGUPS: MISGUIDED
PRIDE VERSUS FREEDOM!" "A FEW TIPS FOR WEIGHING WHETHER YOU'LL
USE THE GEAR" Briefly examines the question of pride vs. energy conservation
through use of assistive technology. Should assistive technology be seen
as tools of independence and freedom or as symbols of aging, helplessness,
and dependence? Considering an assistive device for the first time or adding
additional devices to the existing repertoire can be threatening, frightening
and/or terrifying. "A FEW TIPS..." offers suggestions for deciding
on whether and how to use adopt the use of a new device. COST: $17.50 for
6 issues/1 year. Available in regular or large print, Braille, audio cassette
or computer diskette. SEND: The Disability Rag & ReSource, P.O. Box
145, Louisville, KY 40201. Entered: 2/14/96
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163 - RESOURCE: WOMEN'S HEALTH PROJECT. CONTENT: Established January, 1995.
Provides referrals to women's health practitioners and clinics throughout
Alameda and Contra Costa Counties in California. Coordinates individual
and group support around women's health issues, primarily provided by women
with disabilities who are experienced in the field. INFO: Alameda County
(510) 832-7430, Contra Costa County (510) 939-8000. Entered: 2/14/96
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164 - CATALOG: AUDIO & VIDEO TAPES. A/V Health Services, Inc. CONTENT:
Catalog offers exercise and motivational videos and audio cassettes, focusing
on independence, activities of daily living, exercise, pain, headaches,
sleep, arthritis, and more. SEND: A/V Health Services, Inc. P.O. Box 61031,
Raleigh, NC 27661. INFO: (919) 872-6888 FAX.
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165 - ARTICLE: POST-POLIO SYNDROME BIBLIOGRAPHY, new fourth edition, December
1995. CONTENT: Nearly 1000 articles in 15 chapters such as fatigue, respiratory,
physical medicine, gastrointestinal disorders, dysphagia, neurology, OT,
PT. Personal stories, psychology and general information. Available on 3.5"
disk or paper. Please specify. COST: $20.00. A supplement to the third edition
available for $5.00. Foreign mail: Overseas $35, Canada $27 -- US$ only,
please. SEND: PPS Bib, c/o Bonnie Hatfield, 2 Coral Way, Half Moon Bay,
CA 94019. INFO: 415-726-7226. Entered: 4/7/96