inside body stylized organ viewHealth, Wellness and Aging with Disability

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Condition / Disability Specific Information

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Brain Injury

Rehabilitation for Traumatic Brain Injury  - Report from Evidence-Based Practice Program of the Agency for Health Care Policy and Research (AHCPR).  (added 12/28/99)

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Cancer

CANCER - OncoLink operated by Penn cancer specialists with a mission to help cancer patients, 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 12/16/00)

National Cancer Institute's CancerNet Treatment Options: Complementary and Alternative Medicine - (update 01/26/05)

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Cerebral Palsy

AGING AND CEREBRAL PALSY: THE CRITICAL NEEDS A REPORT FROM THE ROUNDTABLE ON AGING AND CEREBRAL, 3/97 (added 11/20/97). Areas covered: United Cerebral Palsy site contains a search engine and  information on: Americans with Disabilities Act, assistive technology, employment,  exercise, parent information, and other disability-related internet links. 01/26/05 

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Deaf  / Hard of hearing   

Health Education in American Sign Language - DEAF MD.ORG 

<>Provides health related topics to promote the overall wellness of the Deaf community by providing clear and concise health education in American Sign Language. Last accessed 12.28.12

Why You Need and How to Get an ASL Interpreter for Doctor's Appointments, last accessed  12.28.12, 3 parts

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Developmental Disabilities

Clearinghouse on Aging and Developmental Disabilities 01/26/05 
Developmental Disabilities Resources for Healthcare Providers - 01/26/05  collaboration of California-based information and programs on developmental disabilities.  Primary goal of site is to improve the health of persons with developmental disabilities in California. Site is designed to assist physicians and other healthcare 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 educational opportunities, speaking opportunities, and publications.

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Multiple Chemical Sensitivity

Articles:

Accommodating individuals who experience limitations related to asthma, allergies, multiple chemical sensitivity, fragrance or tobacco smoke sensitivity from the President's Committee on Employment of People with Disabilities' Job Accommodation Network. 01/26/05 

Multiple Chemical Sensitivities resource sites:

FacilitiesNet - for professionals who design, construct, manage and maintain buildings. 01/26/05 

Fragranced Products Information Network is a grass roots effort to educate on the chemicals used and the health effects of fragranced products.

Internal Guidelines regarding Multiple Chemical Sensitivity/Environmental Illness (MCS/EI) for Disability -  Services at the University of Minnesota. 01/26/05 

MCSurvivors  MCSurvivors: A Resource Web Site for Multiple Chemical Sensitivity and Environmental Illness. Includes: Articles | Books | Bulletin Boards | Centers | Films and Videos | Food | General Information | Legal Aid | On-Line Libraries | Organizations | Periodicals | Personal Home Pages | Perspectives | Physicians and Referral Agencies | Products | Related Disorders | Research | Services | Treatments |  Treatment Centers.

Multiple Chemical Sensitivity - Frequently Asked Questions About  by  Bob Michaels, 8/98, describes the conditions, recommends strategies for improving access, and lists resources.5 pages

Multiple Chemical Sensitivity Resources - Barbara Robertson's MCS Page.

Statement on the Use of Scented Products - Dalhousie University, Canada, encourages faculty, staff, students and visitors to avoid the use of scented personal care products.

Healthy House Book CoverPrescriptions for a Healthy House : A Practical Guide for Architects, Builders and Homeowners  by Paula Baker, Erica Elliott, John Banta, Paperback - 250 pages 1 Ed edition (January 1998), Inword Pr.

Takes homeowners, architects and builders step-by-step through the construction process. Explains why certain standard building practices are detrimental to health, what to do instead and where to obtain products and expertise. Many references to case studies from personal involvement illustrating points.

Part I: Overview
Description of the Problem and Solutions

Part II: Specification

 1-General Requirements
 2-Site Work
 3-Concrete
 4-Masonry or Other Alternatives to Frame Construction
 5-Metals
 6-Wood and Plastics
 7-Thermal and Moisture Control
 8-Openings
 9-Finishes
10-Specialties
11-Equipment
12-Furnishings
13-Special Construction
14-Conveying Systems
15-Mechanical
16-Electrical

Appendix

Multiple Chemical Sensitivity or Environmental Illness
Author Testimonials on MCS
Page References to Brand Name Products and Services
Manufacturers, Service Providers, and Catalog Sources

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Other

Aging with Neuromuscular Disease - QUEST Volume 7, Number 4, August 2000, Some people with neuromuscular diseases are experiencing grand parenthood, retirement and other welcome hallmarks of a long life. But the golden years may also bring some not-so-pleasant surprises. (added 4/15/01)

National Stroke Association 1-800-STROKES (1-800-787-6537), Offers education, services and community-based activities in prevention, treatment, rehabilitation and recovery. 01/29/05

Osteoporosis:

 

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Polio

Locate Post Polio Centers - A list of physicians and hospitals who have an interest in post-polio problems. They offer comprehensive neurological and/or rehabilitation services. The list also includes a self-identified individual health professionals knowledgeable about the late effects of polio. (updated 7/26/01)

Managing Post Polio: A Guide to Living Well with Post Polio, by Lauro S. Halstead (Editor), Naomi Naierman, Linda S. Halstead, Hardcover - 256 pages (July 1998), Abi Professional Pubns. (added 12/28/99)

An indepth users and support guide, with  information on managing the variously called “the late effects of polio,” “post-polio sequelae,” “post-polio progressive muscular atrophy,” “post-polio muscle dysfunction,” and most commonly “post-polio syndrome,” or “PPS.”
Includes:


Post-Polio Syndrome Central (added 12/28/99)

The Post-Polio Task Force Information Center provides (added 4/11/99):


Polio 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, medical professionals, and public agencies to gain a greater understanding of polio's late effects. 01/26/05


Polio Survivors Page -- Information Packet (added 11/20/97)
Post-Polio Syndrome, Recently Published Medical Articles 01/26/05 


Post Polio Syndrome Home Page and Links 01/26/05 

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Rare / Orphan Diseases

National Organization for Rare Disorders - (added 12/28/00) federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

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Spinal Cord Injury

Aging With Spinal Cord Injury,  by Gale G. Whiteneck (Editor), Susan W. Charlifue, (November 1992)  Demos Medical Publishing.
Craig Hospital, Englewood, Colorado. Multidisciplinary work exploring the physiological and psychosocial aspects of aging in spinal cord injury survivors, for rehabilitation professionals. 38 Contributors. (added 6/00)
 
Craig - Fact Sheets (updated 6/00) see Health and Wellness.
Craig Hospital Wellness and Risk Assessment Profile (WRAP) -  (added 12/28/99) Assessment tool developed especially for persons living with spinal cord injury to review lifestyle behaviors and provide recommendations for healthy choices. Questions focus on:

Heart Disease Risk for Individuals with Spinal Cord Injury  (added 4/8/98)

Living with Spinal Cord Injury -  01/26/05  Paralyzed Veterans of America site contains:

Consumer Guides:

Clinical Practice Guidelines:

Maintaining your health, and living long-term with a spinal cord injury: posted 01/29/05

Areas covered include:

National Spinal Cord Injury Association (Toll-free helpline: 800-962-9629. Works to educate and empower individuals with spinal cord injury and disease to maintain independence, and health. 01/29/05

Prevention and Management of Urinary Tract Infections in Paralyzed Persons - Report from Evidence-Based Practice Program of the Agency for Health Care Policy and Research (AHCPR). 01/26/05 

University of Alabama's RRTC on Secondary Conditions of Spinal Cord Injury - Spinal Cord Injury Educational Materials includes: fact sheets, research updates and publications.01/26/05 

Reproductive Health for Women with Spinal Cord Injury: Part One-The Gynecological Examination (added 1/4/98)

This videotape educates healthcare providers about issues related to providing the woman with SCI  an accurate, yet safe and comfortable,  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, mammograms, hemocult and pap smears. Amie B. Jackson, MD, Medical Director of UAB Spain Rehabilitation Center, Assoc. Professor and Chair, UAB Dept. of Physical Medicine & Rehabilitation, and founder of the first clinic for women with disabilities, is featured.

This videotape package includes a 30 minute videotape and a study guide 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 captioning.

See also [Women's Issues]


Rehabilitation Research and Training Center on Secondary Prevention through Exercise in Individuals with Spinal Cord Injury,  5 year project, funded in 12/2003.

Spinal Cord Injury and Aging  (added 4/8/98)

Spinal Cord Injury: Clinical Outcomes from the Model Systems,  by S.L. Stover, Joel A. Delisa, Gale G. Whiteneck, Hardcover (April 1995), Aspen Pub.

Booknews, Inc. , October 1, 1995  Provides some of the data from the Model Systems Uniform Database, believed to be the largest longitudinal dataset on spinal cord injuries in the world, covering from June 1973 to June 1993. For each topic includes an introduction, data from the National Spinal Cord Injury Statistical Center, data from collaborative studies, an interpretation of the data, and a selected literature review. Among the topics are epidemiology, emergency and acute management, pressure ulcers, consumer involvement in research, economic impact, the effects of age, and causes of death. Annotation copyright Book News, Inc. Portland, Or. (added 6/00)
Spinal Cord Injury Research  01/26/05  SpinalCord Injury Information Network
- 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 4/15/01)
Spinal Cord Injury, Stroke, and Paralysis Support Organizations
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© 1998-2013 June Isaacson Kailes, Disability Policy Consultant, All Rights Reserved.
 Created June 1997  |   Partial Update 01.6.13