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Internaf-News June 1999 Page 2
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Your Mental Health: Anxiety Disorders
How Common Are Anxiety Disorders?
 | Anxiety disorders are the most common mental illnesses in America: more than 19 million
are affected by these debilitating illnesses each year. |
| Anxiety disorders cost the U.S. $46.6 billion in 1990 in direct and indirect costs,
nearly one-third of the nation's total mental health bill of $148 billion. |
What Are the Different Kinds of Anxiety Disorders?
Panic Disorder-Repeated episodes of intense fear that strike often and without
warning. Physical symptoms include chest pain, heart palpitations, shortness of breath,
dizziness, abdominal distress, feelings of unreality, and fear of dying.
Obsessive-Compulsive Disorder-Repeated, unwanted thoughts or compulsive behaviors
that seem impossible to stop or control.
Post-Traumatic Stress Disorder-Persistent symptoms that occur after experiencing a
traumatic event such as rape or other criminal assault, war, child abuse, natural
disasters or crashes. Nightmares, flashbacks, numbing of emotions, depression and feeling
angry, irritable, distracted and being easily startled are common.
Phobias-Two major types of phobias are specific phobia and social phobia. People
with specific phobia experience extreme, disabling, and irrational fear of
something that poses little or no actual danger; the fear leads to avoidance of objects or
situations and can cause people to limit their lives unnecessarily. People with social
phobia have an overwhelming and disabling fear of scrutiny, embarrassment, or
humiliation in social situations, which leads to avoidance of many potentially pleasurable
and meaningful activities.
Generalized Anxiety Disorder-Constant, exaggerated worrisome thoughts and tension
about everyday routine life events and activities, lasting at least six months. Almost
always anticipating the worst even though there is little reason to expect it; accompanied
by physical symptoms, such as fatigue, trembling, muscle tension, headache, or nausea.
What Are the Treatments for Anxiety Disorders?
Treatments have been largely developed through research conducted by NIMH and other
research institutions. They are extremely effective and often combine medication or
specific types of psychotherapy.
More medications are available than ever before to effectively treat anxiety disorders.
These include antidepressants or benzodiazepines. If one medication is not effective,
others can be tried. New medications are currently being tested or are under development
to treat anxiety symptoms.
The two most effective forms of psychotherapy used to treat anxiety disorders are
behavioral therapy and cognitive-behavioral therapy. Behavioral therapy tries to change
actions through techniques such as diaphragmatic breathing or through gradual exposure to
what is frightening. In addition to these techniques, cognitive-behavioral therapy teaches
patients to understand their thinking patterns so they can react differently to the
situations that cause them anxiety.
Is it Possible for Anxiety Disorders to Coexist with Other Physical or Mental
Disorders?
It is common for an anxiety disorder to accompany another anxiety disorder, or in
some cases depression, eating disorders or substance abuse. Anxiety disorders can also
coexist with physical disorders. In such instances, these disorders will also need to be
treated. Before undergoing any treatment, it is important to have a thorough medical exam
to rule out other possible causes.
Treatments
Many people with anxiety disorders can be helped with treatment. Therapy for anxiety
disorders often involves medication or specific forms of psychotherapy.
Medications, although not cures, can be very effective at relieving anxiety symptoms.
Today, thanks to research by scientists at NIMH and other research institutions, there are
more medications available than ever before to treat anxiety disorders. So if one drug is
not successful, there are usually others to try. In addition, new medications to treat
anxiety symptoms are under development.
For most of the medications that are prescribed to treat anxiety disorders, the doctor
usually starts the patient on a low dose and gradually increases it to the full dose.
Every medication has side effects, but they usually become tolerated or diminish with
time. If side effects become a problem, the doctor may advise the patient to stop taking
the medication and to wait a week-or longer for certain drugs-before trying another one.
When treatment is near an end, the doctor will taper the dosage gradually.
Research has also shown that behavioral therapy and cognitive-behavioral therapy can be
effective for treating several of the anxiety disorders.
Behavioral therapy focuses on changing specific actions and uses several techniques to
decreases or stop unwanted behavior. For example, one technique trains patients in
diaphragmatic breathing, a special breathing exercise involving slow, deep breaths to
reduce anxiety. This is necessary because people who are anxious often hyperventilate,
taking rapid shallow breaths that can trigger rapid heartbeat, lightheadedness, and other
symptoms. Another technique-exposure therapy-gradually exposes patients to what frightens
them and helps them cope with their fears.
Like behavioral therapy, cognitive-behavioral therapy teaches patients to react
differently to the situations and bodily sensations that trigger panic attacks and other
anxiety symptoms. However, patients also learn to understand how their thinking patterns
contribute to their symptoms and how to change their thoughts so that symptoms are less
likely to occur. This awareness of thinking patterns is combined with exposure and other
behavioral techniques to help people confront their feared situations. For example,
someone who becomes lightheaded during a panic attack and fears he is going to die can be
helped with the following approach used in cognitive-behavioral therapy. The therapist
asks him to spin in a circle until he becomes dizzy. When he becomes alarmed and starts
thinking, "I'm going to die," he learns to replace that thought with a more
appropriate one, such as "It's just a little dizziness-I can handle it."
Caregiver’s Corner
Caregiver Strain - Counting the Cost
Physical Health
| 25% of care receivers either are bedridden or use wheelchairs. Their need to be lifted
and carried can result in muscle strain and back pain for the caregiver. |
| 16% of caregivers indicate that their health has worsened since becoming a caregiver.
Caregivers are more likely than other persons of the same age to report themselves as in
poor health, and they are significantly less likely than other persons to report that
their health is good or excellent. |
| About 8% of primary caregivers who live with their care recipient are themselves limited
in their ADLs or require ADL assistance. Working caregivers are especially prone to
headaches, weight changes, frequent anxiety, and depression. 60% report physical strain as
a result of caregiving. |
Mental and Emotional Effects
| Up to half of primary caregivers caring for someone with Alzheimer's develop significant
psychological distress. Studies show that among caregivers, an estimated 46% are
clinically depressed. Approximately 49% of female caregivers and 31% of male caregivers
experience depression as a result of caregiving. Among spouse caregivers 21-25% of
husbands and 50-52% of wives are depressed. |
| Caregivers use prescription drugs for depression, anxiety and insomnia two to three
times as often as the rest of the population. Approximately 80% of workers who also have
responsibilities at home for caregiving reported experiencing emotional strain as a result
of caregiving, with more than 10% reporting "a great deal" of emotional strain. |
Financial Issues
| About 76% to 80% of caregiving costs for disabled older adults at home are attributed to
unpaid labor by family members. Research findings suggest that unpaid caregiver support
saves the American taxpayers $33.3 billion in the cost of institutional care. |
Being Female and Disabled
Editor's note: All statistics below are Canadian.
16% of all women are disabled.
Disabled girls are twice as likely to be sexually assaulted.
Disabled women are more likely to be the victims of violence.
Support and services for disabled mothers are almost totally inaccessible or do not
exist.
Women's services are often inaccessible to women with disabilities.
Many doctors have difficulty dealing with women who are both pregnant and disabled.
The unemployment rate for women with disabilities is 74%.
The most inescapable reality for women with disabilities is poverty. The median
employment income for a disabled woman is $8,360 (Canadian). The median employment income
for a disabled man is $19,250.
Sexuality and Disability : Selected Resources
Over the past twenty years, pivotal legislation has gone into effect that has enabled
people with disabilities to gain their rightful place as equal members of American
society. The Rehabilitation Act of 1973, the 1975 Education for All Handicapped Children
Act, and the Americans with Disabilities Act of 1990 have added opportunities for the
inclusion and integration into the community of people of all abilities. With inclusion
and integration come greater opportunities for sexual expression. Thus, there is a need
for greater access to information and educational material that affirms the sexuality of
people of all abilities, including those with early- and late-onset disabilities;
physical, sensory, and mental disabilities; and disabilities that hinder learning.
SIECUS advocates that all persons, including persons with disabilities, receive
sexuality education, sexual health care, and opportunities for socializing and sexual
expression. This necessitates sexuality education and training programs for teachers,
health care workers, and family members to help them understand and support the normal
sexual development and behavior of persons with disabilities. Social agencies and health
care delivery systems must develop policies and procedures that will ensure the provision
of services and benefits on an equal basis to all persons without discrimination because
of disability.
This bibliography was prepared by Shelley Ross and Mitchell Tepper, M.P.H., Ph.D.
candidate, Program in Human Sexuality, Umiversity of Pennsylvania.
Living and Loving: Information about Sexuality and Intimacy
Arthritis Foundation
This book offers tips for solving problems when arthritis interferes with sexuality. It
includes illustrations of comfortable sexual positions for individuals with arthritis.
1993, 17 pp. Single copies free from local chapters; bulk rates available.
Arthritis Foundation, PO Box 19000, Atlanta, GA 30326; 800-283-7800.
Sexuality and Multiple Sclerosis, Third Edition
Michael Barrett
This book covers research findings, communication skills for sexual enhancement,
information resources, and positive approaches to sexual adjustment with multiple
sclerosis. It includes sections specifically for unmarried individuals, gay men, lesbians,
and married couples. It discusses the effects of medication on sexual function. Also
available in French. 1991, 80 pp. Single copies free; orders of multiple copies subject to
postage and handling costs.
Multiple Sclerosis Society of Canada, 250 Bloor Street East, Suite 1000, Toronto,
Ontario, Canada M4W 3P9; 416-922-6065.
Learning to Love: A Set of Simple Booklets on Sexuality
Brook Advisory Centres
These five publications provide accurate information about sexuality and reproductive
health for young people with learning disabilities. Titles in the series are
Contraception, From Child to Adult, How a Baby Is Born, Sex and Making Love, and Health
& Infections. 1991, 23 pp. each, £12.95 for the series, bulk rates available.
Education & Publications Unit, Brook Advisory Centres, 153 A East Street, London
SE17 2SD England; 011-44-71-708-1390.
The Sensuous Heart: Sex after a Heart Attack or Heart Surgery
Suzanne Cambre
This cartoon-style booklet explains the emotional and physical needs of persons who have
had heart attacks or heart surgery. It answers questions about frequency of sexual
activity; suggests comfortable positions; and covers the effects of alcohol, prescribed
drugs, stimulants, and illegal drugs. 1990, 21 pp., $5.75 plus $1.50 postage and handling.
Pritchett and Hull Associates, 3440 Oakcliff Road NE, Suite 110, Atlanta, GA
30340-3079; 800-241-4925.
The Baby Challenge: A Handbook on Pregnancy for Women with a Physical Disability
Mukti Jain Campion
This book describes the impact, effect, and outcome of a range of physical disabilities on
pregnancy and childbirth, and of pregnancy and childbirth on physical disabilities. It
outlines how various disabilities affect fertility, the role of genetics, implications of
medication, remission of symptoms, precautions to take during pregnancy and labor,
possible interventions during delivery, and what to expect in a postnatal ward. A resource
list accompanies each chapter. The book includes a chapter specifically geared for health
care professionals. 1990, $15.95.
Routledge, Chapman & Hall, 29 West 35th Street, New York, NY 10001; 212-244-3336.
Sexuality and Spinal Cord Injury
Sylvia Eichner McDonald, Willa M. Lloyd, Donna Murphy, and Margaret Gretchen Russert
The authors explore a number of topics regarding sexuality and reproduction before and
after a spinal cord injury, including the physiology of sexual response and reproductive
health. One chapter outlines the steps individuals with spinal cord injuries may take to
prepare for sexual activity. Another is devoted to different ways to give hugs from a
wheelchair. There is also a general discussion about sexual attitudes, relationships,
parenthood, contraception, and sexually transmitted diseases. The book concludes with a
list of myths about sexuality and spinal cord injury and a resource list. 1993, 34 pp.,
$14.95 plus postage and handling.
The Spinal Cord Injury Center, Froedtert Memorial Lutheran, 9200 West Wisconsin Avenue,
Milwaukee, WI 53226; 414-259-3657.
Women with Disabilities: Essays in Psychology, Culture, and Politics
Michelle Fine and Adrienne Asch, editors
Drawing on law, social science, folklore, literature, psychoanalytic theory, and political
activism, the contributers to this volume describe the experience of women with
disabilities. The essays consider the impact of social class, race, the age at which
disability occurs, and sexual orientation on the disabled woman's self-esteem, as well as
on her life options. Topics include sex roles and culture, bodies and images, the
constructions of gender and disability, and women with disabilities in relationships.
1988, 347 pp., $19.95.
Temple University Press, University Service Building, Room 305, Broad and Oxford
Streets, Philadelphia, PA 19122; 215-204-8787.
Past Due: A Story of Disability, Pregnancy, and Birth
Anne Finger
The author, who was disabled by polio during childhood, explores the complexities of
disability and reproductive rights through an account of her pregnancy and home birth
experience. Disability rights, motherhood, and reproductive freedom are among the issues
she raises. 1990, 200 pp., $10.95.
The Seal Press, 3131 Western Avenue, Suite 410, Seattle, WA 98121-1028; 206-283-7844.
Love: Where to Find It, How to Keep It
Elle Friedman Becker
This self-help book describes ways for people with disabilities to meet and discusses
communication skills, dating, and terminating relationships. It is written from the
personal experiences and professional observations of a single woman with an acquired
disability who works as a counseling psychologist. 1991, 104 pp., $6.95 plus $1.25 postage
and handling. Accent Special Publications, Cheever Publishing, PO Box 700, Bloomington,
IL 61702; 309-378-2961.
Marriage and Disability
Betty Garee and Raymond Cheever, editors
In this collection of articles from ACCENT magazine, people with a variety of physical
disabilities tell how they met and married, and discuss the happy, successful lives they
are living with their spouses. 1992, 80 pp., $7.95.
Accent Special Publications, Cheever Publishing, PO Box 700, Bloomington, IL 61702;
309-378-2961.
Reproductive Issues for Persons with Physical Disabilities
Florence P. Haseltine, Sandra S. Cole, and David B. Gray, editors
This resource features contributions from both consumers with disabilities and health
professionals from a variety of backgrounds. Chapters focus on dispelling myths about
sexuality and disability and exploring sexual issues that challenge people with
disabilities. Topics include basic information about congenital and acquired physical
disabilities, reproductive rights and opportunities, sexual dysfunctions, sexually
transmitted diseases, reproductive physiology, sexual development, health care needs,
fertility, birth control, adoptions, pregnancy, labor and delivery, and parenthood.
Personal stories of people with disabilities appear throughout the book, and various
clinical and policy issues are discussed. 1993, 400 pp., $33.00.
Paul H. Brookes Publishing, PO Box 10624, Baltimore, MD 21285-0624; 800-638-3775.
Sex and Back Pain Lauren Andrew Hebert
A physical therapist describes various types of back pain and sexual positions for maximum
comfort. Line drawings and photographs illustrate recommended exercises and sexual
positions for people who experience back pain. All individuals in the photographs are
clothed. In an accompanying video, a partially clothed man and woman demonstrate the
various sexual positions described in the book. Book: 1992, 121 pp., $12.95. Video: 1993,
21 min., $149.00 (comes with three 21-page professional manuals; additional manuals are
available for $6.00 each).
IMPACC, 1 Washington Street, PO Box 1247, Greenville, ME 04441; 800-762-7720; from
outside the United States, 207-695-3354.
Understanding and Expressing Sexuality: Responsible Choices for Individuals with
Developmental Disabilities
Rosalyn Kramer Monat-Haller
The author draws on her experience in counseling to discuss sexuality issues for people
with developmental disabilities. Topics include anatomy and physiology, physical
maturation, contraception, marriage, parenthood, AIDS, sexually transmitted diseases, and
sexual exploitation and abuse. The book includes a bibliography, resource list, and
therapeutic intervention tools. The author conducts in-service training and workshops on
this book. 1992, 240 pp., $26.00 plus $2.50 postage and handling. Residents of South
Carolina add 5 percent sales tax.
Paul H. Brookes Publishing. Place orders through Rosalyn Kramer Monat-Haller, PO Box
2103, Summerville, SC 29484; 803-873-6935.
Enabling Romance: A Guide to Love, Sex, and Relationships for the Disabled (And
People Who Care about Them)
Ken Kroll and Erica Levy Klein
This book contains information on the sexual abilities and limitations of amputees and
individuals with spinal cord injuries, multiple sclerosis, blindness, hearing impairments,
and neuromuscular disorders. It includes guidelines for overcoming stereotypes and offers
advice on family planning, safer sex, and establishing intimacy. 1992, 209 pp., $22.50.
Harmony Books/Crown Publishers, 201 East 50th Street, New York, NY 10022; 800-733-3000.
Sexual Rehabilitation of the Spinal-Cord-Injured Patient
J. F. J. Leyson, editor
Twenty-eight experts in the fields of sexuality, sexual dysfunction, and spinal cord
injury contributed to this practical guide to the management of every type of sexual
dysfunction arising from spinal cord injury. The book also explores fertility, pregnancy,
and sexual orientaiton among individuals with spinal cord injury. 1991, 560 pp., $89.50.
Humana Press, 999 Riverview Drive, Suite 208, Totowa, NJ 07512; 201-256-1699.
Finding Love and Intimacy
Robert Mauro
From the editor and publisher of PeopleNet, the personals newsletter for unmarried persons
with disabilities, comes this compilation of essays, poems, short stories, and book
reviews on love, relationships, and sexuality. Topics include dealing with protective
parents, arranging dates, and coping with shyness. 1994, 190 pp., $8.95.
Accent Special Publications, Cheever Publishing, PO Box 700, Bloomington, IL 61702;
309-378-2961.
A Guide to Bladder Cancer, Urostomy and Impotence
Roni Olsen
This book offers guidance to people who have recently received a diagnosis of bladder
cancer or who are contemplating a urinary diversion (or an ostomy of any type). The author
shares her husband's experience with bladder cancer and the results of her own extensive
research. 1994, 140 pp., $6.95 plus $1.50 postage and handling.
Highline Editions, 6400 Southwood Drive, Littleton, CO 80121; 303-798-8281.
The Sensuous Wheeler, Sexual Adjustment for the Spinal Cord Injured
Barry Rabin
This sexuality guide for men and women with spinal cord injuries covers sexual response,
adjustment, and functioning. It also outlines ideas for attracting a partner, preparing
for sexual activity, sexual positions, and nondemand pleasure techniques. 1980, 153 pp.,
$14.95 plus $3.00 postage and handling.
New Mobility, Miramar Communications, PO Box 8987, Malibu, CA 90265-8987; 800-543-4116,
ext. 454.
The Right to Control What Happens to Your Body: A Straightforward Guide to Issues of
Sexuality & Sexual Abuse
The Roeher Institute
This easy-to-read, large-print book discusses the risk and incidence of sexual abuse of
people with mental disabilities. It includes definitions of abuse and assault, as well as
suggesting ways of recognizing, treating, and preventing sexual abuse. This guide includes
a glossary and lists of referral sources and legal resources. 1991, 29 pp., $7.00
(Canadian) plus 15 percent postage and handling.
The Roeher Institute, Kinsmen Building, York University, 4700 Keele Street, North York,
Ontario, Canada M3J 1P3; 416-661-9611.
Mother-to-Be: Guide to Pregnancy and Birth for Women with Disabilities
Judith Rogers and Molleen Matsumura
This book discusses all aspects of pregnancy in the context of disability, from making the
decision to have a child to the problems that women with disabilities confront after
giving birth. It begins with interviews with thirty-six women who have a range of
disabilities, including cerebral palsy, lupus, ataxia, multiple sclerosis, spina bifida,
postpolio syndrome, and arthritis. Other chapters discuss nutrition, exercise, labor, and
delivery. Appendices include dietary plans, a glossary, an extensive index, and lists of
important resource organizations and suggested reading materials. 1991, 410 pp., $24.95
plus $4.00 postage and handling.
Demos Publications, 386 Park Avenue South, Suite 201, New York, NY 10016; 212-683-0072.
The Illustrated Guide to Better Sex for People with Chronic Pain
Robert W. Rothrock and Gabriella D'Amore
This self-help booklet provides information about frequent problems that interfere with
sexual enjoyment for individuals who suffer from chronic pain and suggests simple, basic
solutions. It includes six illustrations showing comfortable sexual positions for persons
with various pain disorders, and stresses the importance of communication between
partners. 1991, 37 pp., $8.95 plus $3.00 postage and handling, bulk prices available.
R. Rothrock & G. D'Amore, 201 Woolston Drive, PO Box 1355, Morrisville, PA
19067-0325; 215-736-1266.
Sexual Concerns When Illness or Disability Strikes
Carol Sandowski
This book discusses the possible effects of various medical conditions (arthritis,
diabetes, spinal cord injury, alcoholism) on sexual functioning, relationships,
self-esteem, and communication. The author explores treatments for sexual dysfunction.
1989, 281 pp., $56.75 plus $5.50 postage and handling.
Charles C. Thomas Publisher, 2600 South First Street, Springfield, IL 62794-9265;
217-789-8980, 800-258-8980.
Fact Sheet: HIV/AIDS Prevention for People with Disabilities
Sharon Wachsler
This comprehensive fact sheet covers HIV/AIDS prevention and testing information, and
includes a list of resources and agencies. 1991, 20 pp., single copies free, multiple
copies $1.00 each for Massachusetts residents and $2.00 each for others.
Information Center for Individuals with Disabilities, Fort Point Place, 27-43 Wormwood
Street, Boston, MA 02210-1606; 617-727-5540; TDD 617-345-9743.
Intimacy and Disability
Barbara F. Waxman, Judi Levin, and June Isaacson Kailes
Written by and for individuals with disabilities, this guide assists people in overcoming
barriers to developing intimate relationships. Topics include self-image, body image,
sexuality, dating, intimacy, contraception, and sexual abuse. The book includes a resource
list. 1982, 110 pp., $5.50.
National Rehabilitation Information Center, 8455 Colesville Road, Suite 935, Silver
Spring, MD 20910-3319; 800-346-2742.
Signs of Sexual Behavior: An Introduction to Some Sex-related Vocabulary in American
Sign Language
James Woodward
This introduction to sexuality-related American Sign Language vocabulary offers clear
illustrations of more than 130 signs. Comprehensive explanations and notes on derivation
are included. A video illustrating the signs is also available. Book: 1993, 81 pp., $7.95.
Video: 1993, 30 min., $24.95. Book and video: $29.95.
T.J. Publishers, 817 Silver Spring Avenue, Silver Spring, MD 20910, 301-585-4440.
Parenting with a Disability
I want to be a mother, I have a disability, What are my choices?
Editor's note: The following brochure was adapted from material from DAWN -Disabled
Women's Network. Contact Information is listed at the end of the article.
Choices: What this brochure is all about
If you have a disability, usually you can have a baby with little risk to you or the
child. You may face extra challenges to a successful pregnancy and childbirth, depending
on your disability. But you do have a right to decide for yourself.
DisAbled Women's Network Ontario (DAWN) supports your choice to have children. We hope
this brochure will provide some information and encouragement for you as you think about
your choices.
Some things to think about
Ask yourself some careful questions on the practical issues of motherhood:
Do I have the support I need?
| Do you need to change the services you receive? |
| What will you need to change in your job or your home? |
If you need changes in housing, support services or income, start making them now. It
can take time to deal with different levels of government.
| Is your partner or other personal support person able and willing to help with the
child? |
| Can you get the information and services you need? For example, you may need a signed
childbirth class. |
Will I be a good parent?
Every mother asks this question. Motherhood can be wonderful, but it isn't easy. You
may worry you can't provide something because of your disability. Just remember, no new
mother can answer every need her child will have. Loving your child, that is the most
important part.
In fact, your disability can be a source of strength to your child. If you accept your
disability, the child will also accept it. Your child may grow to be more independent and
considerate than other children because of this experience.
What is the risk to my health?
There may be a health risk in pregnancy for some women with disabilities. Find out if
pregnancy is possible and safe for you. Some questions depend on what your disability is:
| Will your disability get worse under the stress of pregnancy?
If you have a disability that affects your walking -- during the last three months you may
need to use a wheelchair. |
| If you need to change your drug therapy for a safe pregnancy, can you manage the change?
If you have questions about drugs that you take for your disability, call the service
Mother Risk at (416) 813-6780. |
Some health concerns apply to all women who want a safe healthy childbirth. Keep
healthy during your pregnancy:
| When pregnant, avoid cigarettes and alcohol. |
| Protect your strength with good food and rest. |
| Avoid getting immunizations or X-rays during pregnancy. |
| If you have a cat, wear gloves when you change the litter or have someon else do it. |
| You and your doctor or midwife must check for major changes in your blood pressure or
weight. |
What is the risk to my baby?
If your disability is inherited, will your child have it? Often the risk is not much
more than for other women.
Talk with your doctor or midwife. You have the final right to decide, once you know
your choices.
If you decide pregnancy is not for you, and you still want to be a mother, think about
adopting a child. For more information, call the Adoption Unit of the Ministry of
Community and Social Services (416) 327-4730.
After you've decided, take an active role in your care, get what you need from the many
community resources that you can call upon.
| If possible, get a referral to a doctor or midwife who has had experience with disabled
mothers. Make sure you and everyone involved in your care talks with each other. |
| If pregnancy is a new experience, you may be anxious. Talk with a mother with a
disability to get useful advice. |
Contact someone at DAWN Ontario or an Independent Living Centre, who may help you meet
a disabled mother to talk with. If you are a mother already, please write DAWN and tell
us!
| You may have some specific concerns about the delivery and care of your newborn. An
occupational therapist could help you plan ways to care for your baby or adapt your home. |
| Contact your local La Leche League for information about breastfeeding. |
| You can choose a midwife to care for you during and after your pregnancy. |
Contact the Association of Ontario Midwives at (416) 494-4819.
Visit your hospital or birth centre
Your midwife or doctor can arrange a tour of the hospital or birth centre. You can talk
with staff about:
| the equipment you need to bring. |
| your communication needs -- for example sign language interpretation or blissymbols. |
| how your disability will affect your labour and delivery, and the care you will need. If
your disability is invisible -- such as chronic fatigue -- let them know how it affects
you. |
| who you want with you during delivery. |
When you take this active role in your care, you give other people a chance to plan how
they will work with you.
Get help when you're home
Often new mothers struggle with isolation and fatigue. Don't struggle alone! This is
the time to get the help you need from family, friends, and support services.
You will find your own way of mothering and your baby will adapt to your disability.
Remember there's no such thing as Super Mom; there is no "right" way to be a
mother. Be positive and confident, and you'll enjoy your new role as a mother.
Resources
Childbearing and Parenting Program for Women wiwth Disabilities/Chronic Illness
For a guide to aids and adaptations: Contact
Elaine Carty
School of Nursing
University of British Columbia
206 - 2211 Wesbrooke Mall
Vancouver, B.C.
V6T 2B5
Mother-to-Be: A Guide to Pregnancy and Birth for Women with Disabilities
by Judi Rogers and Molleen Matsumura
New York: Demos Publications, 1991
386 Park Ave. S., Ste. 201 N.Y., 10016
Parenting: An Accent Guide
Tips from parents (who happen to have a disability) on raising children
Accent Special Publications
Cheever Publishing Inc., P.O. Box 700 Bloomington, IL 61702
The Baby Challenge:
A handbook on pregnancy for women with a physical disability
by Mukti Jain Campion
New York: Tavistock/Routledge, 1990
(helpful information about how specific disabilities relate to pregnancy)
Through the Looking Glass (newsletter for disabled parents)
2198 Sixth St., Ste. 100
Berkeley, California 94710-2204
(510) 848-1112
DAWN Ontario
Office Mailing Address
P.O. Box 781, Station "B"
Sudbury, Ontario
P3E 4S1
CANADA
DAWN Ontario Office Location
124 Cedar Street
Suite 407
Sudbury, Ontario
P3E 1B4
(705) 671-0825
Toll Free Number: 1-800-561-4727
Health & Fitness: Rayanud's Disease
If you feet are always freezing no matter what the temperature is, you may be suffering
from Raynaud's disease (pronouced Ray NOZE).
One of the more curious circulatory diseases is Raynaud's phenomenon -- a sharp
overreaction to cold by the blood vessels just below the skin.
While it is normal for cold-exposed vessels to contract to slow blood flow and preserve
body heat, blood vessels in Raynaud's victims contract too much, causing the skin to
become extremely pale and bluish . When blood flow is restored, skin color changes again
to a very red. The affected area may also become numb or tingle. It generally affects
those parts of the body which are most susceptible to cold -- the fingers and toes, and,
less frequently, the ears and nose.
In most cases, it is no more than an uncomfortable annoyance. However, in rare
instances, the constriction can become chronic, leading to dry gangrene -- a shriveling of
tissues killed by lack of oxygen. Once that sets in, amputation of the affected tissue
becomes the only option.
Primary Raynaud's usually affects both hands and both feet, and the cause is not known
for certain. Secondary Raynaud's usually affects either both hands or both feet. Causes of
secondary Raynaud's can be identified. Smoking is one cause. Some drugs may also cause
this form of Raynaud's phenomenon. These include:
| Some heart and blood medications. |
| Migraine headache medications. |
Other medical conditions that may cause secondary Raynaud's phenomenon include:
| Scleroderma--a thickening and hardening of the skin and other body tissues. |
| Systemic lupus erythematosus--a chronic inflammation of the skin and organ systems. |
| Rheumatoid arthritis--a chronic inflammation and swelling of tissue in the joints. |
| Blood flow reduction--problems that slow or stop blood flow in a vessel. These include
inflammation and hardening of the arteries (arteriosclerosis). |
| Nerve problems--problems that affect the nerves supplying the muscles. |
| Pulmonary hypertension--a condition in which the blood pressure rises in the blood
vessels of the lungs. |
Injuries may also cause Raynaud's phenomenon. They can result from frostbite, surgery,
or other causes. For example, regular use of machinery such as chain saws and vibrating
drills can hurt blood vessels. Other activities that may aggravate the phenomenon are
regular typing and piano playing.
Since warmth is the best defense against Raynaud's individuals suffering from Raynaud's
must dress heavily in cold weather, with layered clothing, scarves, heavy coats, heavy
socks, and mittens under gloves because gloves alone allow heat to escape. It is also
recommended that sufferers wear "wristlets" to close the space between the
sleeve and the mitten. Indoors, they should wear socks and comfortable shoes.
Biofeedback -- teaching the patient to "think" the toes and fingers warm --
has been used with some success in treating primary Raynaud's. If this approach fails, a
vasodilating medication may be prescribed to relax artery walls and improve blood flow
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