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The following resources, information and products were
listed in past issues of EDS Today. Select an issue to jump to the links
section.
Lead Article:
Featured Topic: Celebration of Life
- Woman doesn't let multiple disabilities get her down by
Daniel J Vance
Hidden Disabilities
Laura's Library
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Reviewed:
Fall-Winter 2005
Laura's Review:
"Wouldn’t it be lovely if there were a how-to guide
for dealing with people who have illnesses or disorders? We could just
hand a copy to our friends and family, and they would probably be
relieved having a simple set of rules to follow. Susan P. Halpern’s The
Etiquette of Illness strives to be that book. It falls short, but is a
worthy read all the same..."
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Brace Yourself
- Emergency Planning for People with EDS
Massage Therapy for EDS
Research
Product Reviews
Service Dogs
Return to Top.
Lead Article:
- Labor Analgesia for the Parturient With an Uncommon
Disorder: A Common Dilemma in the Delivery Suite By Kuczkowski,
Krzysztof M. MD, Assistant Clinical Professor of Anesthesiology and
Reproductive Medicine and Director, Obstetric Anesthesia, Departments of
Anesthesiology and Reproductive Medicine, University of California, San
Diego, California
Featured Topic: Pregnancy and EDS
Coping
Strategies
Hidden Disabilities
Laura's Library
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"Chronic Pain and the Family is a brief overview of the
consequences of pain for family life, from the point of view of a pain
specialist. The author, Dr. Julie K. Silver, is a professor with Harvard
Medical School and a Medical Director for Spaulding Rehabilitation
Hospital. She writes as a medical doctor, and not as person with
first-hand experience of daily living with pain, or even with a loved
one in pain. This makes Chronic Pain and the Family useful as a window
in the mind of our doctors. Ever wonder what they are really thinking?
Silver lets you know, and you will probably find it helpful." Reviewed:
Spring-Summer 2005
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Brace Yourself
- "Neck Protection" By Barbara J. Uggen-Davis
Research
Product Reviews
- BookBuddy II, Amanda Crawford Designs, Ph.
818-879-9978, $26.00, Review by Laura Hague
Announcements
Service Dogs
- "Basic Training" by Paula Offutt and Joella the
RottnWeiler
Return to Top.
Lead Article:
Featured Topic: Driving and EDS
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Cars, Trucks Become Friendlier to Those
with Mobility Issues, by John Poretto
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Adapting Motor Vehicles for People with Disabilities, Dept of
Transportation
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Inflatable Pillows, by Bonnie
Heintskill
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Chrysler Installs Wheelchair Lifts, By
Pam Moffat
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Driving in Vermont, by Christine
Phillips
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Other Resources
Coping Strategies
Hidden Disabilities
Laura's Library
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Laura's Review:
"Are you increasingly finding yourself left out of
activities? Do your friends call less and less often? Do family members
make comments about you being lazy? Do you suffer in silence rather than
admit that you can’t keep up? If you answer “yes” to any of these
questions, you will want to read Stacy Taylor’s workbook, Living Well
with a Hidden Disability..."
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Research
Mail Bag
Return to Top.
Lead Article:
Featured Topic: The Decision Whether or Not to Have
Children
Coping Strategies
Hidden Disabilities
Laura's Library
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"Power to the Patient: The Treatments
to Insist On When You're Sick." Reviewed:
Spring-Summer 2004
"Isadore Rosenfeld's Power to the Patient is one
of a growing number of patient self-education manuals...
...sense that the book was thrown together quickly and with little
forethought is accentuated by the poor proofreading on the part of the
publisher... Despite these drawbacks, Power to the Patient is
still worthwhile. It is to-the-point, mostly clear in style, and
informative regarding current widely available treatment..."
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Brace Yourself
Announcements
Return to Top.
Lead Article:
Featured Topic: Depression and EDS
Coping Strategies
Hidden Disabilities
Laura's Library
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Why did trees have to die for this? James N. Parker
and Philip M. Parker have collected their internet search engine
printouts and published them as The Official Patient's Sourcebook on
Ehlers-Danlos Syndrome.
The very title of James N. Parker and Philip M. Parker's book lets the
reader know that this publication is largely a money-making scheme. The
Official Patient's Sourcebook on Ehlers-Danlos Syndrome? That implies
authorization from some agency guaranteeing the contents of the book
reflect their stance. There are two problems with this regarding The
Official Patient's Sourcebook. First, no agency, reputable or otherwise,
has endorsed this book. Second, this book takes no stance. It is merely
an instruction manual on how to use the Internet to find information on
Ehlers-Danlos Syndrome... |
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When most of us think about mental illness, we think
of people in crisis, perhaps hallucinating or suicidal. Shadow Syndromes
disabuses the reader of the notion that there is a clear dividing line
between what passes for normal and what is a diagnosable mental illness.
John J Ratey, M.D., and Catherine Johnson, Ph.D., explain how a wide
variety of serious illnesses have less severe manifestations. The
authors discuss several different psychological disorders, along with
their milder manifestations. Depression, bipolar disorder, rage
disorder, ADD, autism and anxiety all have "shadow" versions, in which
the symptoms are less marked but can be a hindrance in life, even
leading to serious problems, if not recognized. These disorders create a
"noisy" brain that drowns out the ability to organize thoughts
productively. "When we must struggle with a chronically noisy biology,
it is almost impossible to be focused or directed; it is almost
impossible to embrace a genuine and heartfelt ambition."... |
Brace Yourself
Announcements
Service Dogs
Mail Bag
Return to Top.
Lead Article:
Featured Topic: Gardening and EDS
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Mel Bartholmew's
Square Foot Gardening is one of the treasures of gardening. Any
gardener can use the techniques outlines by Mel Bartholomew to continue
gardening throughout one's life. |
Laura's Library
Return to Top.
Lead Article:
Featured Topic: Wheelchairs and Scooters
Laura's Library
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Cheri Register's
The Chronic Illness Experience: Embracing the Imperfect Life
(formerly titled Living with Chronic Illness) probes the varied
problems of daily living with medical conditions that can not be cured.
Like a friend at the kitchen table, Register uses her experience and
that of her acquaintances to illustrate the issues facing those of us
with invisible chronic conditions... |
Return to Top.
Lead Article:
Featured Topic: Exercise and EDS
Coping Strategies
Water.
Laura's Library
Mom's Ramblings
Announcements
Service Dogs
Memorials & Tributes
Return to Top.
Lead Article:
Featured
Topic: EDS and Employment: Job Hunting.
Coping Strategies
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Prescription for Nutritional Healing:
A Practical A-Z Reference to Drug-Free Remedies Using Vitamins,
Minerals, Herbs, and Food Supplements by Phyllis A., C.N.C. Balch,
James F., M.D. Balch |
Laura's Library
Brace Yourself
Announcements
Service Dogs
Return to Top.
Lead Article:
Featured
Topic: EDS Travel.
Travel Organizations
Travelin' Talk
Network, PO Box 1796, Wheat Ridge, CO 80034,
303-232-2979, 303-239-8486 Fax. Global network of persons with
disabilities. Member benefits include newsletter, travel discounts, sample
magazines, subscription discounts, hotel and travel product discounts.
Mobility International,
PO Box 10767, Eugene, OR 97440, 541-343-1284 V/TTY or 541-343-6812 Fax.
Non-profit organization promoting international educational exchange,
leadership and disability rights and travel for persons with and without
disabilities. Quarterly newsletter, 'Over the Rainbow'. Annual membership
is $35.00 US and to receive only the newsletter is $15.00 US.
SATH
(The Society for the Advancement of Travel for the Handicapped), 347 Fifth
Ave., Ste. 610, New York, NY 10016, 212-447-7284, 212-725-8253 Fax.
Representing the interests of disabled travelers for over 25 years.
Membership is $45.00 US annually for individuals and $100.00 US for
business. They offer members information sheets for many locations.
Moss Rehab
Hospital Information Services, 215-456-5995.
Provides people with a disability information and resources to improve the
activities of their daily living and travel. They have information and
resources available on their website as well as a complete library at the
Hospital.
Elderhostel,
75 Federal Street, Boston, MA 02110. Non-profit organization for persons
who are aged 55 years and older. Many of their programs accommodate
persons with disabilities.
IAMAT
(International Assn. For Medical Assistance to Travelers), 417 Center
Street, Lewiston, NY 14092, 716-754-4883. Non-profit Foundation to advise
travelers of health risks, geographical distribution of diseases,
immunization requirements for all countries, and to make competent medical
care available to the traveler around the world. There is no charge to
become a member and receive their directory and other useful information.
NICAN
(National Information Communication Awareness Network), PO Box 407,
Curtain, ACT 2605, 1 800 806 769 or V/TTY (02) 6285 3713, (02) 6285 3714
FAX. Non-profit organization based in Australia providing information for
persons with disabilities. Help line for subscribers. Subscription costs
vary from $19 to $53. Although they do not do trip planning, they do
answer specific questions.
Travel Newsletters
Accessible
Journeys, 35 West Sellers Avenue, Ridley Park,
PA 19078 USA, Tel: 1-800-846-4537, or 610-521-0339, Fax: 610-521-6959.
Travel agent and newsletter.
Emerging Horizons, Candy & Charles Creative
Concepts, PO Box 278, Ripon, CA 95366. News about domestic and
international destinations, timely travel tips and unique recreation
opportunities, accessible B&B's, travel health issues, resources,
accessibility information and recommendations from other travelers.
Frequency: Quarterly. Cost: $11.95/year US, $16.95/ year non US.
The Very Special Traveler. PO Box 756. New Windsor, MD
21776. 410-635-2881. Author and wheelchair user, Beverly Nelson travels
extensively an writes bout her experiences and offers travel tips.
Frequency: Bi-monthly. Cost: $25.00 / year.
Access for Disabled America, 436 14th Street, Ste. 200,
Oakland, CA 94612, 510-419-0523 or 510-419-0728 fax. Non-profit
organization helping all persons with disabilities live and function in an
accessible environment. Much of this newsletter is helpful information and
tips about travel. Frequency: Bi-annually. Price: No charge. Donation
requested
We're Accessible - Travel News, 6187-175B Street,
Surrey, BC V3S 4C1 Canada, 604-576-5075 Tel/Fax. Travel tips and
resources. Frequency: Quarterly. Cost: (US) $12.50 / year
TRAVEL MAGAZINE Open World Magazine, 347 Fifth
Ave., Ste. 610, New York, NY 10016, 212-447-7284 or 212-725-8253.
Publication of the Society for the Advancement of Travel for the
Handicapped devoted entirely to travel and travel resources. Frequency:
Quarterly. Cost: $18.00 / year
New Mobility,
PO Box 220, Horseham, PA 19044, 888-850-0344,
215-675-9133 or 215-675-9376 fax. Covers a wide range of disability
issues including travel, sports and recreation. Frequency: Monthly. Cost:
$27.95 / year
Ports of Call, 522 E. Broadway, Princeton, IN 47670,
812-385-3282 before noon. Cost: $5.00 donation.
Disability International,
101-7 Evergreen Pl., Winnipeg, Manitoba R3L 2T3
Canada, 800-749-7773, 204-287-8010 or 204-453-1367. Published by Disabled
Peoples' International, a cross-disability coalition of organizations of
disabled people consisting of over 120 national affiliates. Frequency:
Quarterly. Cost: $15.00 / year
We Magazine,
495 Broadway, 6th Floor, New York, NY 10012, 800-963-2426 or 212-941-9584,
212-941-6459 fax. New lifestyle magazine for people with disabilities.
Cost: $24.95 / year
Accent on Living,
PO Box 700, Bloomington, IL 61702, 309-378-2961
309-378-4420 fax. Covers most disability issues, including some travel in
each issue. Frequency: Quarterly. Cost: $12.00 / year
Abilities Magazine,
489 College Park St., Ste. 501 Toronto, Ontario
M6G 1A5 Canada, 416-923-1885 or 416-923-9829. Cost: $14.00 Canadian / year
Active Living,
PO Box 237 Grimsby, Ontario L3M 4G3 Canada,
905-309-1639 905-309-1640 fax. Focus on 'how to' improve health, fitness
sand mobility, 'where to' enjoy accessible leisure and travel and 'what
to' look for in a new therapeutic, recreational or sporting activity,
their new title says it best - Active Living. Frequency: Bi-monthly. Cost:
$19.97
Ability Magazine, 1001 W. 17th St., Costa Mesa, CA
92627, 949-854-8700
949-548-5966. Features a wide range of disability issues including
travel. Frequency: Bi-monthly. Cost: $29.70 / year
Travel Books
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How to Travel-A guidebook for Persons with Disabilities
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Access for Disabled Americans - A Guide for the
Wheelchair Traveler |
| “India, Wheelchair Journey" by Ed
Long. $12.00. Ed Long Publications, 2503 Lincoln Ave., San Diego, CA
92104, USA |
| "Smooth Ride Guide to United States
Eastern Seaboard." $22.50 + 9.00 shipping. Seven Hills Book
Distributors, 49 Central Ave., Cincinnati, Ohio 45202. |
| "Smooth Ride Guide to Australia and New
Zealand." $20.90 + 8.40 shipping. |
| "Easy Access Australia." by Bruce
Cameron., Australian $19.95 + $4.90 shipping. Bruce Cameron, PO Box
218, Kew, Victoria 3101, Australia. |
| “Holidays in the British Isles" by John
Stanford. $7.00. RADAR , 12 City Forum, 250 City Road, London EC1V
8AF, United Kingdom |
| "Long Haul Holidays and Travel".
RADAR , 12 City Forum, 250 City Road, London EC1V 8AF, United
Kingdom |
| "European Holidays and Travel Abroad"
$5.00. RADAR , 12 City Forum, 250 City Road, London EC1V 8AF, United
Kingdom |
| "Wheelchair Through Europe" by Annie
Markin $12.95. Graphic Language Press, P.O. Box 270, Cardiff by the
Sea, CA 92007. |
| "The Wheelie's Handbook to
Australia" by Colin James, who uses a wheelchair. Colin James, PO Box
89, Coleraine, Victoria 3315, Australia. |
| "Holiday Care Guide To Accessible
Accommodations & Travel." $7.00. Holiday Care Service Imperial
Buildings, 2nd Floor Victoria Road, Horley, Surrey RH6 7PZ, United
Kingdom. |
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Handicapped in Walt Disney World : A...
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| "Air Carrier Access." FREE. Eastern
Paralyzed Veterans Association, 75-20 Astoria Boulevard , Jackson
Heights, NY 11370-1177 , Phone: 718-803-EPVA |
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A World of Options : A Guide to International Exchange,
Community Service and Travel for Persons with Disabilities
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Exotic Destinations for Wheelchair...
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| "The Complete Guide of Americans
National Parks" by Fodor Travel Publications, Inc. |
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Fodor's Great American Vacations for Travelers with
Disabilities... |
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Easy Access to National Parks : The...
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| "Wheel and Waves" by Genie and George
Aroyan. $13.95. Wheels Aweigh Publishing Co. |
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Able to Travel : True Stories by and for People with
Disabilities |
| "California Parks Access" by Linda and
Allen Mitchell |
| "Access in London” "Access in Paris”
"Access in Israel” by Pauline Hephaistos Survey Project." Free.
Suggested donation $15-20 to cover printing and air mail postage.
Access Project , 39 Bradley Gardens, West Ealing London W13 8HE UK.
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Wheelchair Traveler, 1990
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Accessible Trails in Washington's Backcountry
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Smart Vacations : The Traveler's Guide...
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| "Roll-In Shower Guide" by Howard
Willner. $29.95 plus $3.50 shipping & handling. Howard Willner , 1621
Galleon CT. . Margo Island, FL 33937, Phone: 941-642-4616.
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Travel Tips by Donna Lindsay
- Resources used:
A Truly Magical Vacation by
Kendra Kuss
Half the Planet
- Source for several travel articles.
Coping Strategies
Laura's Library
Lead Article:
- Abstract:
Orthostatic Intolerance and Chronic Fatigue Syndrome Associated with
Ehlers-Danlos Syndrome by Peter C. Rowe; Dianna F. Barron, MS; Hugh
Calkins, MD; Irene H. Maumenee, MD; Patrick Y. Tong, MD, PhD; and Michael
T. Geraghty, MB, MRCPI.
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Disability Benefits. Chronic
Fatigue Syndrome and Fibromyalgia can be extremely disabling illnesses.
You may need your employer to make accommodations to allow you to continue
working, or you may be eligible for disability benefits. Fighting for your
rights can often be a tough battle. Here's a list of valuable resources to
help you maximize your chances of success.
Featured Topic:
EDS and Employment: Job Accommodations
Laura's Library
Brace Yourself
Memorials & Tributes
Lead Article
Abstract: "GI
Manifestations of Ehlers-Danlos Syndrome" by Jeffrey A. Solomon, MD;
Lisa Abrams, MD, and Gary R. Lichtenstein, MD.
Coping Strategies
Brace Yourself
Announcements
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 CEDA Site New
Location! The Canadian Ehlers Danlos Association has moved to a new
website. Check them out at:
http://www.ehlersdanlos.ca/ |
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USA Subscriptions $10 |
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Overseas Subscriptions $15 |
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Buy current issue $5 |
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