Wellness and Aging with Disability
/ Disability Specific Information
Traumatic Brain Injury - Report from Evidence-Based Practice
Program of the Agency for Health Care Policy and Research
operated by Penn cancer specialists with a mission to help cancer
families, health care professionals and the general public get accurate
cancer-related information at no
charge. Designed to make it easy for the general public to navigate
through the pages to obtain the information that they want. (added
Institute's CancerNet Treatment Options: Complementary and
Medicine - (update 01/26/05)
AGING AND CEREBRAL
PALSY: THE CRITICAL NEEDS A REPORT FROM THE ROUNDTABLE ON AGING AND
3/97 (added 11/20/97). Areas covered:
United Cerebral Palsy site
contains a search engine and information on: Americans with
Act, assistive technology, employment, exercise, parent
and other disability-related internet links. 01/26/05
- Women's Issues
- Quality of Medical Care
- Medical Problems that Worsen with Age
- Emotional and Psychological Issues
- Managed Care
- Dissemination of Research
- Regional Centers
Deaf / Hard of hearing
Education in American Sign Language
- DEAF MD.ORG
health related topics to promote the
overall wellness of the Deaf community by providing
concise health education in American Sign Language. Last accessed
a deaf-friendly doctors database
Why You Need and How to Get an ASL
Interpreter for Doctor's Appointments, last accessed 12.28.12, 3 parts
on Aging and Developmental Disabilities 01/26/05
for Healthcare Providers - 01/26/05 collaboration of
information and programs on developmental disabilities. Primary
of site is to improve the health of persons with developmental
in California. Site is designed to assist physicians and other
providers in caring for persons with developmental disabilities and to
support consumers with developmental disabilities and their families in
making informed health care decisions. Covers medical care information
for specific disabilities and related issues, health provider
opportunities, speaking opportunities, and publications.
- Assistive Technology
- Community Inclusion
- Family Issues
- General Aging with DD
- Physical & Psychosocial Changes
- Policy/Service Delivery
- Quality of Life
individuals who experience limitations related to asthma, allergies,
chemical sensitivity, fragrance or tobacco smoke sensitivity from
President's Committee on Employment of People with Disabilities' Job
Approaches to Chemical Sensitivity, Volume 105 Supplement 2, March
an Introduction for Health Professionals, April 7, 1998.
A Sensitive Issue - Environmental Health Perspectives, Volume 102,
Number 9, September 1994.
- Scents &
Environmental Health Perspectives Volume 106, December 12, November
Multiple Chemical Sensitivities resource sites:
for professionals who design, construct, manage and maintain buildings.
Network is a grass roots effort to educate on the chemicals used
the health effects of fragranced products.
Guidelines regarding Multiple Chemical Sensitivity/Environmental
(MCS/EI) for Disability - Services at the University of
MCSurvivors: A Resource Web Site for Multiple Chemical Sensitivity and
Environmental Illness. Includes: Articles | Books | Bulletin Boards |
| Films and Videos | Food | General Information | Legal Aid | On-Line
| Organizations | Periodicals | Personal Home Pages | Perspectives |
and Referral Agencies | Products | Related Disorders | Research |
| Treatments | Treatment Centers.
Chemical Sensitivity - Frequently Asked Questions About
Bob Michaels, 8/98, describes the conditions, recommends strategies for
improving access, and lists resources.5 pages
Chemical Sensitivity Resources - Barbara Robertson's MCS Page.
Statement on the Use of
Products - Dalhousie University, Canada, encourages faculty, staff,
students and visitors to avoid the use of scented personal care
for a Healthy House : A Practical Guide for Architects, Builders and
by Paula Baker, Erica Elliott, John Banta, Paperback - 250 pages 1 Ed
(January 1998), Inword Pr.
Takes homeowners, architects and builders step-by-step through the
process. Explains why certain standard building practices are
to health, what to do instead and where to obtain products and
Many references to case studies from personal involvement illustrating
Part I: Overview
Description of the Problem and Solutions
Part II: Specification
4-Masonry or Other Alternatives to Frame Construction
6-Wood and Plastics
7-Thermal and Moisture Control
Multiple Chemical Sensitivity or Environmental Illness
Author Testimonials on MCS
Page References to Brand Name Products and Services
Manufacturers, Service Providers, and Catalog Sources
with Neuromuscular Disease - QUEST Volume 7, Number 4, August
Some people with neuromuscular diseases are experiencing grand
retirement and other welcome hallmarks of a long life. But the golden
may also bring some not-so-pleasant surprises. (added 4/15/01)
Stroke Association 1-800-STROKES
(1-800-787-6537), Offers education, services and community-based
prevention, treatment, rehabilitation and recovery. 01/29/05
Centers - A list of physicians and hospitals who have an
in post-polio problems. They offer comprehensive neurological and/or
services. The list also includes a self-identified individual health
knowledgeable about the late effects of polio. (updated 7/26/01)
Post Polio: A Guide to Living Well with Post Polio, by Lauro S.
Halstead (Editor), Naomi Naierman, Linda S. Halstead, Hardcover - 256
(July 1998), Abi Professional Pubns. (added 12/28/99)
An indepth users and support guide, with information on
the variously called “the late effects of polio,” “post-polio
“post-polio progressive muscular atrophy,” “post-polio muscle
and most commonly “post-polio syndrome,” or “PPS.”
- a systematic and organized five-step process in How to Find
- suggestions for compensating for muscle weakness, including
and seating, while working or resting, the placement of your knees and
feet while seated, the height and shape of your chair, correctly
and lifting objects, from a coffee mug to a heavy pot, package, purse
clothes on a hanger, and the placement of your computer keyboard and
and other tips are offered to make your kitchen, bathroom, entire home,
and even your car more user-friendly
- principles of self-treatment with the help of health
of muscle strength recovery, and the effects on the survivor’s body of
long-term overuse - and sometimes disuse - of the muscles and joints
- a specific program to alleviate the fatigue and pain of PPS and
to slow the rate of new muscle weakness
- a study of the psychological and social problems facing polio
- the dynamics of families of persons with disabilities
- assistive devices
- romance and dating, sexuality, marriage, pregnancy, childbirth,
- organizing and maintaining a support group
- vocational strategies
- how to deal with managed care health insurance companies
- benefits that may be available from the federal government under
Security Disability Insurance (SSDI) and under Supplemental Security
The Post-Polio Task Force
Center provides (added 4/11/99):
- post-polio education and service by through links to
publications and newsletters
- information on Post-Polio Syndrome [PPS] on:
- frequently asked questions
- physiologic mechanisms
- how it can be distinguished from other diseases
- how it is currently treated
- locating PPS centers
- new developments in PPS
Connection of America
–Offers publications, health
sources and resources on polio
and post polio syndrome (or "late effects of polio"). 01/26/05
Polio Survivors Association – Dedicated
to improving the quality of life for severely
disabled polio survivors. Works with local polio support groups,
professionals, and public agencies to gain a greater understanding of polio's late
Survivors Page -- Information Packet (added 11/20/97)
Syndrome, Recently Published Medical Articles 01/26/05
- An Approach to the Patient with Suspected Post Polio Syndrome.
- Preventing Complications in Polio Survivors Undergoing Surgery
- True Answers for Friends & Family by Richard L. Bruno,
Kessler Institute for Rehabilitation.
- A Pound of Prevention is Worth a Ton of Therapy by Richard L.
- Getting Social Security Benefits
- Bouncing Back Without Guilt by Wendy Cline, Psy.D. Transcribed
1993 Colorado Educational Conference.
- Recognizing Typical Coping Styles of Polio Survivors Can
by Frederick M. Maynard, M.D. and Sunny Roller, M.A.
- Do's and Don'ts List compiled by the Post Polio League.
- Ever wondered what causes Polio Feet?
- Post-Polio Syndrome and Re-Rehabilitation by Frederick M.
- The Late Effects of Polio: An Eleven Year Experience Managing
a presentation by S.K. Yarnell, MD at the Vancouver 1992 Conference.
- Summary of Symptoms and Effects Compiled by the Post Polio
- Post-Polio Fatigue: How It Can Change Your Mind by Mavis J.
- Exercise -- What is Right for You by Mavis J. Matheson, M.D.
- L-Carnitine and Post-Polio Syndrome by Mavis J. Matheson, M.D.
- Changing Your Life By Conserving Energy by Mavis J. Matheson,
- Total Joint Replacement in Post-Polio by Marny Eulberg, M.D.
- Anesthesia: Considerations for Polio Survivors from Polio
For the American perspective read Thom Bloomquist's response.
- Polio in Perspective for 1994 by Dr. Jacquelin Perry.
- Post Polio Research Update -- December 10, 1995 by Dr.
- The Late Effects of Polio: From Taming a Mysterious Syndrome to
the Ravages of Time by Frederick M. Maynard, M.D.
- Acute Anterior Poliomyelitis, Some Observations by Edward
- Therapeutic Electrical Stimulation (TES) by Ruth Wyler.
- Polio excerpts from "Medical and Surgical Nursing" by Amy F.
- Chronic Illness Bibliography.
- Grading for Manual Muscle Testing attributed to Dr. Jacquelin
- Medications portions of an article by Ruth Wyler-Plaut on a
by Dr. Lauro Halstead.
- Polio E-Mail List Archives
- The poliovirus is a non-enveloped virus with +ve sense RNA
- The Racanciello Lab at Columbia University has done a
of primary research on polio and has created the Polio Information
- The Treatment of Post-Polio Syndrome with Acupuncture by Dr. F.
- Postpolio syndrome haunts patients who had recovered by Angela
in Nursing & Allied Healthweek.
Polio Syndrome Home Page and Links 01/26/05
Rare / Orphan Diseases
National Organization for Rare
Disorders - (added 12/28/00) federation of voluntary health
dedicated to helping people with rare "orphan" diseases and assisting
organizations that serve them. NORD is committed to the identification,
treatment, and cure of rare disorders through programs of education,
research, and service.
Spinal Cord Injury
With Spinal Cord Injury, by Gale G. Whiteneck (Editor),
W. Charlifue, (November 1992) Demos Medical Publishing.
Craig Hospital, Englewood, Colorado. Multidisciplinary work exploring
the physiological and psychosocial aspects of aging in spinal cord
survivors, for rehabilitation professionals. 38 Contributors. (added
- Fact Sheets (updated 6/00) see Health and Wellness.
Craig Hospital Wellness and
Risk Assessment Profile (WRAP) - (added 12/28/99)
tool developed especially for persons living with spinal cord injury to
review lifestyle behaviors and provide recommendations for healthy
Questions focus on:
- Alcohol Abuse
- Am I ready for a Van?
- Bladder Cancer
- Breast Cancer
- Changing or Choosing a Doctor
- Interacting with your doc
- Long-Term Care Givers
- Optimal Health
- Personal Care Assistants: How to Find, Hire and Keep Them
- Switching to a power chair
- Upper Extremity Pain
- You and Your Doc
- Weight Gain
Cord Injury - 01/26/05 Paralyzed Veterans of
- Physical Activity
- Stress Management
- Alcohol/Drug Use
- Self-Care Exams
Clinical Practice Guidelines:
- Guide to Managed Care
- Depression: What You Should Know
- Neurogenic Bowel: What You Should Know
- Autonomic Dysreflexia: What You Should Know
- Outcomes Following Traumatic Spinal Cord Injury
- Urinary Dysfunction and Multiple Sclerosis
- Depression Following Spinal Cord Injury
- Neurogenic Bowel Management in Adults with Spinal Cord Injury
- Prevention of Thromboembolism in Spinal Cord Injury
- Acute Management of Autonomic Dysreflexia: Adults with Spinal
Presenting to Health Care Facilities
your health, and living long-term with a spinal cord injury: posted
Areas covered include:
Spinal Cord Injury Association (Toll-free
helpline: 800-962-9629. Works to educate and empower individuals with
cord injury and disease to maintain independence, and health. 01/29/05
of Urinary Tract Infections in Paralyzed Persons - Report from
Evidence-Based Practice Program of the Agency for Health Care Policy
Research (AHCPR). 01/26/05
Alabama's RRTC on Secondary Conditions of Spinal Cord Injury -
Spinal Cord Injury Educational Materials includes: fact sheets,
updates and publications.01/26/05
Health for Women with Spinal Cord Injury: Part One-The Gynecological
This videotape educates healthcare providers about issues related to
providing the woman with SCI an accurate, yet safe and
annual GYN examination. Covered are management of autonomic dysreflexia
during the examination, methods of transferring from wheelchair to exam
table, positioning on the examination table, breast examination,
hemocult and pap smears. Amie B. Jackson, MD, Medical Director of UAB
Rehabilitation Center, Assoc. Professor and Chair, UAB Dept. of
Medicine & Rehabilitation, and founder of the first clinic for
with disabilities, is featured.
This videotape package includes a 30 minute videotape and a study
with an extensive list of additional resources. Produced by
the RRTC in Secondary Complications in SCI at the University of Alabama
at Birmingham, it is now available in 1/2" VHS format with closed
Target Audience: Community practitioners who provide medical services
to a woman with SCI, including GYN and family practice physicians,
practitioners, public health nurses, women with SCI, and
See also [Women's Issues]
Eligible for CME Credit: Viewers of this videotape, which
a study guide with bibliography and post-test, are eligible to apply
1 credit towards the AMA Physician's Recognition Award. Application
and processing cost is included in post-test.
Produced and Distributed By: UAB Rehabilitation Research and
Center in Secondary Complications in Spinal Cord Injury, Training
1717 6th Avenue South #506, Birmingham, AL 35233-7330. If
Cost: Purchase: $39.95 each + $5.00 shipping/insurance
Rental: $25.00 one week period + $5.00
rental fee can be applied towards purchase price if within 30
of rental period. No complimentary previews are available.
To Order: Send check or purchase order in amount of
payable to: UAB Dept of PM&R Training Office, 1717 6th Avenue
South #506, Birmingham, AL 35233-7330. Please specify if ordering
format. We are unable to accept credit card orders or ship COD.
Research and Training Center on Secondary
Prevention through Exercise in Individuals with Spinal Cord Injury,
5 year project, funded in 12/2003.
and Aging (added 4/8/98)
Cord Injury: Clinical Outcomes from the Model Systems,
S.L. Stover, Joel A. Delisa, Gale G. Whiteneck, Hardcover (April 1995),
Booknews, Inc. , October 1, 1995 Provides some of the
data from the Model Systems Uniform Database, believed to be the
longitudinal dataset on spinal cord injuries in the world, covering
June 1973 to June 1993. For each topic includes an introduction, data
the National Spinal Cord Injury Statistical Center, data from
studies, an interpretation of the data, and a selected literature
Among the topics are epidemiology, emergency and acute management,
ulcers, consumer involvement in research, economic impact, the effects
of age, and causes of death. Annotation copyright Book News, Inc.
Or. (added 6/00)
Cord Injury Research 01/26/05
Injury Information Network
- Cure Paralysis Now? A forum to encourage research on cures for
many great links, e.g. to informal electronic journals concerning SCI.
- Spinal Cord Society, an international organisation for cure
treatment of spinal cord injury and related problems.
- Nomenclature for spinal vertebrae can be found on this image,
from Infowest (Cure Paralysis Now?) above.
- From the National Institutes of Health, a gopher menu of NIH
- On-line versions of the journal Spine.
- funded through grants to the UAB Rehabilitation Research and Training
Center (RRTC) on Secondary Conditions of Spinal Cord Injury and the UAB
Model SCI Center. The conducts research and training in the prevention
and treatment of secondary conditions of spinal cord injury. (added
Cord Injury, Stroke, and Paralysis Support Organizations
- SCI Topics & Outline
- Equipment & Accessibility
- SCI Issues SCI/Disability Organizations
- Information Sheets
- Training/Education Programs
- Other Disability Links
| Web Site Map | Services
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- Contact information for organizations providing support for and
for people with with spinal injuries and their families and friends.
- Links to on-line information about spinal cord injury and
- Pediatric brain tumors, hydrocephalus, syringomyelia/syrinx,
tethered spinal cord, Chiari malformation and related disorders.
- Spine surgery and rehabilitation resources.
Neurovascular Surgery Homepage for information on prevention and
© 1998-2013 June Isaacson Kailes,
Disability Policy Consultant, All Rights Reserved.
| Partial Update 01.6.13