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Caregiver Tips &
Information
10 Tips for Family Caregivers
Find a
Doctor
Tips for Family Caregivers from
Doctors
Care
Management Techniques You Can Use
Seating and Mobility
Compare
Home Health Agencies in Your Area
Additional Resources
10 Tips for Family Caregivers.
1. Caregiving is a job and respite is your earned right. Reward
yourself with respite breaks often.
2. Watch out for signs of depression, and don’t delay in
getting professional help when you need it.
3. When people offer to help, accept the offer and suggest specific
things that they can do.
4. Educate yourself about your loved one’s condition and how to
communicate effectively with doctors.
5. There’s a difference between caring and doing. Be open to
technologies and ideas that promote your loved one’s
independence.
6.Trust your instincts. Most of the time they’ll lead you in
the right direction.
7. Caregivers often do a lot of lifting, pushing, and pulling. Be
good to your back.
8. Grieve for your losses, and then allow yourself to dream new
dreams.
9. Seek support from other caregivers. There is great strength in
knowing you are not alone.
10. Stand up for your rights as a caregiver and a citizen.
Tips for Family Caregivers from Doctors
- Write questions down
so you won’t forget them
- Be clear about what
you want to say to the doctor. Try not to ramble.
- If you have lots of
things to talk about, make a consultation appointment, so the
doctor can allow enough time to meet with you in an unhurried
way.
- Educate yourself
about your loved one’s disease or disability. With all the
information on the Internet it is easier than ever before.
- Learn the routine at
your doctor’s office and/or the hospital so you can make
the system work for you, not against you.
- Recognize that not
all questions have answers—especially those beginning with
“why.”
- Separate your anger
and sense of impotence about not being able to help your loved
one as much as you would like from your feeling about the
doctor. Remember, you are both on the same side.
- Appreciate what the
doctor is doing to help and say thank you from time to time.
Care
Management Techniques You Can Use
Did you ever wish you could just pick up the phone and call someone
who would take stock of your situation, help you access the right
services, counsel you and your family to help resolve some of your
differences, then monitor your progress with an eye toward channeling
your energy and abilities as effectively as possible? If your answer
is “yes,” you’re not alone. Having the help of a
care coordinator (often called a care manager) could make all of our
lives easier and less lonesome, and help us be more capable family
caregivers. While most of us may not have access to a care
coordinator, we can all learn how to think and act like one, thereby
reaping numerous benefits for our loved ones and ourselves.
What Is
Care Coordination?
Although every case is different, the care coordination approach
usually involves:
- Gathering information
from healthcare providers;
- An assessment of your
care recipient and the home environment;
- Research into
available public and/or private services and resources to meet
your loved one’s needs; and
- Ongoing communication
between all parties to keep information up to date and services
appropriate and effective.
Unfortunately, an
assessment of your abilities and needs is not necessarily a standard
part of the process, but it should be. A complete view of the
situation cannot be gained without one. An objective analysis of your
health, emotional state, other commitments, etc., are key elements in
determining how much you can and cannot do yourself, and what type of
outside support is needed to ensure your loved one’s health and
safety.
Become
Your Own Care Coordinator
By learning and applying at least some of the care coordination
techniques and ideas that follow, you’ll be in a much better
position to develop an organized course of action that will,
hopefully, make you feel more confident and in control — a goal
well worth working toward.
Educate
yourself on the nature of the disease or disability with which
you’re dealing. Reliable information is available from the
health agency that deals with your loved one’s condition and
the National Institutes of Health. When using the Internet, stick
with well-known medical sites. Understanding what is happening to
your care recipient will provide you with the core knowledge you need
to go forward. It will also make you a better advocate when talking
with healthcare professionals.
Write down your observations of the present situation
including:
- Your loved
one’s ability to function independently, both physically
and mentally.
- The availability of
family and/or friends to form a support network to share the
care.
- The physical
environment: Is it accessible or can it be adapted at reasonable
cost?
- Your other
responsibilities — at work, at home, and in the community.
- Your own health and
physical abilities.
- Your financial
resources, available insurance, and existence of healthcare or
end-of-life documents.
This assessment
will help you come to a realistic view of the situation. It will let
you know the questions to which you need answers. It can be a handy
baseline for charting your caregiving journey and reminding you just
how much you’ve learned along the way.
Hold a
family conference. At least everyone in the immediate family should
be told what’s going on. A meeting can set the stage for
divvying up responsibilities so that there are fewer
misunderstandings down the road when lots of help may be needed. A
member of the clergy, a professional care coordinator, or even a
trusted friend can serve as an impartial moderator. A family meeting
is a good way to let everyone know they can play a role, even if they
are a thousand miles away. It can help you, the primary family
caregiver, from bearing the brunt of all the work all of the time.
Keep good
records of emergency numbers, doctors, daily medications, special diets,
back-up people, and other pertinent information relating to your
loved one’s care. Update as necessary. This record will be
invaluable if something happens to you, or if you need to make a trip
to the ER. If you can maintain a computer-based record, that will
make updating all that much easier and it might even allow you to
provide the medical team with direct access to the information.
Join a
support group, or find another caregiver with whom to converse.
In addition to emotional support, you’ll likely pick up
practical tips as well. Professionals network with each other all the
time to get emotional support and find answers to problems or
situations they face. Why shouldn’t family caregivers?
Start
advance planning for difficult decisions that may lie ahead.
It’s never too early to discuss wills, advance directives, and
powers of attorney, but there comes a time when it is too late. It is
also vital that you and your loved one think through what to do if
you should be incapacitated, or, worse, die first. It can happen.
Develop a
care team to help out during emergencies, or over time if your
situation is very difficult. In an ideal world there will be lots of
people who want to help. More likely you’ll be able to find one
or two people to call on in an emergency or to help with small
chores. The critical thing is to be willing to tell others what you
need and to accept their help.
Establish
a family regimen. When things are difficult to begin with, keeping
a straightforward daily routine can be a stabilizer, especially for
people who find change upsetting and confusing.
Approach
some of your hardest caregiving duties like a professional. It’s
extraordinarily difficult to separate your family role from your
caregiving role, to lock your emotions up in a box while you focus on
practical chores and decisions. But it is not impossible to gain some
distance some of the time. It requires an almost single-minded
approach to getting the job at hand done as efficiently and effectively
as possible. It takes practice, but is definitely worth the effort.
©National Family
Caregivers Association | www.nfcacares.org | Phone:
800/896-3650
Seating
& Mobility
As a caregiver,
you need to be very understanding to the individuals needs. This is a
very hard time as they are being told they need to start living their
life in a different manor than they had done so previously. It will
be most beneficial to educate them, either with a professional, or
through a support group. Getting them involved in different
activities with others in the same condition, the individual will be
able to make the transition much easier. As far as the actual device,
you will want to make sure that the individual is fully capable of
performing all the operations of the mobility device and can do so in
a comfortable manor. Areas to pay close attention to include an
adjustable backrest, a suspension system, a fore-and-aft track
adjustment, an up-and-down seat adjustment, an armrest and/or
footrest, and lumbar region support.
How do you care
for your mobility device?
The most
important areas that you need to pay attention to are referred to as
the 3 B’s…Bad
batteries, bent
wheel rims and failed bearings.
If you notice something that doesn’t seem
right, but it isn’t all too annoying, you should still get it
looked at right away. This could prevent a more severe accident from
happening. So as the saying goes “it’s better to be safe
than sorry”.
When
a wheelchair is purchased, you will want to make sure that all the
correct adjustments and modifications are made. This needs to be done
by a professional and should take up to a couple of hours if done
correctly. As long as the proper measures are taken initially, the
work of maintaining the device will be substantially easier.
Additional
Resources
It's always wise
to find out what your county and state have to offer in the way of
services, even if you think you won't qualify for them. Check the
blue pages of your phone book for the numbers, or go on line.
Counties and states all have web sites. Type the name of your state
or county and state into any major search engine i.e. Iowa, or Montgomery
County, PA.
Navigate from there to locate the Department of Health and Human
Services and the specific office most relevant to your needs such
office on disabilities, elder affairs, or material and child health.
Other good
sources of information include your local hospital or clinic (social
work department), area adult day centers, social service and
faith-based agencies, and/or the local chapter of the health agency
that focuses on your loved one's condition. It is by no means certain
that any of these will offer caregiver support services, but they are
good places to check, and they are good sources for information about
services to directly support your loved one.
National
Family Caregivers Association
10400 Connecticut
Avenue, Suite 500
Kensington, MD 20895
800-896-3650
Web site: http://www.thefamilycaregiver.org
e-mail: info@thefamilycaregiver.org
The National
Family Caregivers Association (NFCA) is a grassroots organization
created to educate, support, empower and advocate for the millions of
Americans who care for chronically ill, aged, or disabled loved ones.
NFCA is the only constituency organization that reaches across the
boundaries of different diagnoses, different relationships and
different life stages to address the common needs and concerns of all
family caregivers. NFCA serves as a public voice for family
caregivers to the press, to Congress and the general public. NFCA
offers publications, information, referral services, caregiver
support, and advocacy.
Caregiver-Specific
Web Sites
There are a variety of Web sites that offer information and support
for family caregivers, in addition to those from specific
organizations.
Help for Patients and Caregivers :
Alzheimers
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Safety: Steps
to Enhancing Your Home
Modifying the Environment
When caring for an individual with Alzheimer's disease at home,
safety and accessibility can be important concerns. The person may
experience changes in:
- Judgment (forgets
how to use familiar household appliances and equipment
properly)
- Orientation to time
and place (gets lost on her own street or is unable to
recognize or find areas in the home)
- Behavior (becomes
easily confused, suspicious or fearful)
- Physical Ability
(Has trouble with balance, or depends on a walker or
wheelchair for mobility)
- Senses (experiences
changes in vision, hearing sensitivity to temperatures and
depth perception)
With some
creativity, flexibility and problem-solving, the home can be
adapted to support these changes. This article provides simple
steps to make the home safe and supportive for the individual with
Alzheimer's.
Before
modifying your home, consider the following:
Assess the environment. Identify possible hazards by looking at
your home through the eyes of an individual with Alzheimer's. What
objects could cause the person injury? Can the person easily get
outdoors or access dangerous areas such as the kitchen, garage or
basement?
Focus
on adapting rather than teaching. Avoid reteaching the
person with Alzheimer's about safety issues. Instead, identify
potential risks and take the appropriate precautions.
Simplify
the activities. Most accidents, especially in the area of
personal care, occur when the person with Alzheimer's is rushed.
Break activities into simple, step-by-step tasks allowing her
plenty of time to complete them. Giving extra assistance, such as
laying out clothes in the order that they are put on, will also
help her with simple tasks that have become hard to do.
Support
the person's needs. Try not to create an environment that is too restrictive.
The home should encourage independence, social interaction and
activities that are meaningful.
Be
realistic about what you can do. You will never be able
to prevent every problem. Rely on your common sense while paying close
attention to objects or activities that could be dangerous.
CREATING A SAFE ENVIRONMENT
Once you have identified potential safety problems, take the
following steps to modify your home.
MAKE
POTENTIALLY DANGEROUS PLACES LESS ACCESSIBLE
The person with Alzheimer's may be at risk if she has access to
certain areas of the home or the outdoors. The following action
steps will help to make potentially dangerous areas more difficult
to access:
Lock or
disguise hazardous areas. Cover doors and locks with a painted
mural or cloth. Use "Dutch" doors, swinging doors or
folding doors to hide entrances to the kitchen, stairwell, workroom
and storage areas.
Install locks out of sight.
Place deadbolts either high or low on exterior
doors to make it difficult for the person with Alzheimer's to
wander out of the house. Keep an extra set of keys hidden near the
door for easy accessibility. Remove locks in bathrooms or bedrooms
so she is not able to lock herself inside.
Use special safety devices.
Child-proof locks and door knobs can help limit
access to places where knives, appliances, equipment, cleaning
fluids and other poisonous products are stored. Use automatic
shut-off devices for appliances such as an iron, toaster oven and
coffee maker.
Accommodate Visual Changes.
As the disease progresses, changes in vision may
make it difficult for the person to distinguish colors and
understand what is being seen. Consider the following:
Diffuse bright light. Reduce glare by removing or covering mirrors,
and glass-top or highly polished furniture. Cover windows with
blinds, shades or sheer draperies to block bright sunlight. Avoid
using bare light bulbs or clear "decorator" bulbs without
shades. Taking these action steps may help to reduce agitation in the
person with Alzheimer's.
Create an even level of
lighting. Add extra lighting in entries, outside
landings, areas between rooms, stairways and bathrooms because
changes in levels of light can be disorienting to the individual
with Alzheimer's.
Use different colors. Place
contrasting colored rugs in front of doors or steps to help the
individual anticipate staircases and room entrances. However, avoid
using very dark colored rugs since it may be perceived as a hole.
Apply colored decals to glass doors and large windows because she
may think they are open doors.
Install special lighting. Use
night lights in hallways, bedrooms and bathrooms to prevent
accidents and reduce disorientation, especially if the person
wanders. Illuminated light switches and timers for lights in these
areas can also assist her at night.
BEWARE OF HAZARDOUS OBJECTS
AND SUBSTANCES
Even the most basic appliance or household object can become
dangerous to the person with Alzheimer's. To reduce risk of injury:
Limit the use of certain appliances and equipment. Remove
electrical appliances such as an electric razor or a hairdryer,
from the bathroom to reduce the risk of electrical shock.
Put away kitchen appliances and equipment including knives, mixers,
grills, guns, lawn mowers or power tools, since the person may not
remember how to use them safely. Also, consider removing the knobs
on the stove or installing a hidden gas valve or circuit breaker so
she can not turn on the stove.
Supervise smoking and alcohol consumption. Keep an eye on the
person who uses cigarettes, cigars or pipes because she may not
realize the dangers related to smoking. Monitor consumption of
alcohol because it can have many negative effects, especially when
mixed with medication.
Be prepared for the unexpected. Persons with Alzheimer's have been
known to eat items such as small rocks, dirt, plants, flowers and
bulbs. Take precaution by removing toxic plants and any decorative
fruits (wax, plastic, etc.) that the person may think are real.
Also, remove vitamins, prescription drugs, sugar substitutes and
seasonings from the kitchen table and counters.
Keep the refrigerator safe. The person with Alzheimer's may not be
able to distinguish the difference between fresh and rotten food.
Clean out the refrigerator regularly and discard inedible food.
Keep foods that are safe to eat in the front of the refrigerator
and at eye level where she can easily see them.
Keep walking areas clear. Remove objects, such as magazine racks,
coffee tables and floor lamps, to create safe wandering areas and
reduce the possibility of injury.
AVOID INJURY DURING DAILY
ACTIVITIES
Since a majority of accidents in the home occur during daily
activities such as bathing, toileting, and eating, it is important
to take special precautions.
Monitor temperatures. As
the disease progresses, the person may have a decreased sensitivity
to temperature. Consider setting hot water heaters at 120 degrees
and installing automatic-mixing or anti-scalding devices to the
faucets. Meanwhile, help her mix hot and cold water, and always
turn off hot water first when finished. Also, it is important to
check the temperatures of foods before serving to make sure that
they are not too hot or too cold to consume.
Prevent falls. Install
walk-in showers and grab bars in the shower or tub and at the edge
of the vanity to enable the person to move around safely and
independently. Shower seats and commode chairs are also helpful if
she has limited mobility. Add textured decals to slippery surfaces
and apply adhesives to keep throw rugs and carpeting in place, or
remove them completely. Place padding on the edge of counters and
bathroom fixtures if they are sharp.
Supervise taking
prescription and over-the-counter medications. The
person may experience many difficulties related to medication use,
either forgetting to take them, or taking too much. Consider using
locked pill dispensers operated on a self-timer to assist her. Make
medicine or kitchen cabinets less accessible by installing locks.
CREATING A SUPPORTIVE ENVIRONMENT
While it is important to make the environment safe, it is equally
important to create an atmosphere that supports the changing needs
of the individual with Alzheimer's.
Encourage independent movement. Eliminate hazardous objects, limit
access to danger-points such as stairwells, kitchens and outside
doors so the person can move safely and independently. If
necessary, make room to accommodate walkers and wheelchairs.
Involve the person in activities. Let her participate in preparing
meals, rinsing the dishes, folding clothes, raking leaves and other
activities with your supervision. These activities enhance
self-esteem and make her feel more valued around the home.
USE SURROUNDINGS TO
INITIATE ACTIVITIES
Leave out scrapbooks, photo albums or old magazines that help the
person to reminisce and encourage conversation. Try using music the
person once enjoyed in the past to prompt activities such as
dancing, clapping or other types of exercises. It is important,
however, to keep the noise level to a minimum since loud
distracting sounds may cause agitation.
Create access to the
outdoors.
Encourage the person to enjoy supervised outdoor activities such as
gardening or walking. A backyard with a fence allows her to safely
go outside on her own. If she is unable to go outdoors, consider
doing indoor activities in a room with many windows or on an
enclosed porch.
Be prepared for
emergencies.
Keep a list of emergency phone numbers and addresses for the local
police and fire departments, hospitals and poison control
helplines. Check fire extinguishers and smoke alarms, and conduct
fire drills on a regular basis.
If the person has a tendency to wander, enroll her in the
Alzheimer's Association's Safe Return program. The program is a
nationwide system designed to identify, locate and return to safety
persons who are memory impaired
TIPS
FOR CREATING A SAFE AND SUPPORTIVE ENVIRONMENT
Kitchen
- Lock up cleaning
supplies
- Turn off
electricity to the garbage disposal
- Hide knives and
other utensils
- Put away the
toaster, blender, and any small appliances
- Unplug larger
appliances such as the microwave
- Remove knobs from
stove or hook up stove to a hidden gas valve or electric
switch
- Keep fire
extinguisher nearby
- Clean out
refrigerator regularly
Bathroom
- Set water
temperature at 120 degrees
- Install grab bars
- Apply textured
decals on slippery surfaces
- Supervise the use
of hairdryers, electric and hand razors
- Remove locks from
the bathroom door
- Discard dangerous
items from the medicine chest
Bedroom
- Avoid using
electric blankets
- Monitor use of
heating pads
- Install night
lights between the bedroom and bathroom
Garage
- Put away hand and
power tools such as drills, axes, saws and picks
- Limit access to
large equipment such as a lawnmower, weedwacker and snowblower
- Lock up poisonous
products such paints and fertilizers
Throughout
the home
- Disguise outdoor
locks or install deadbolts
- Remove or tape down
throw rugs and carpeting
- Apply colored
decals to large windows and sliding glass doors
- Remove poisonous
plants
- Create an even
level of lighting near doorways, stairways and between rooms
- Remove object that
block walking paths
Outdoors
- Disconnect gas
grills
- Lock gates to
fences
- Supervise the
person in areas that are not enclosed
- Put away car keys
ALZHEIMER'S ASSOCIATION:
SOMEONE TO STAND BY YOU
The Alzheimer's Association is the only national voluntary
organization dedicated to conquering Alzheimer's disease through
research and to providing information and support to people with
Alzheimer's disease, their families, and caregivers. For more
information call: (800) 660-1993
http://www.alzoc.org/support
Safety: Steps
to Ensuring Safety
Preventing Wandering and Getting Lost
When someone with Alzheimer's disease wanders and becomes lost, it
is a frightening experience that puts that person at risk for
serious or fatal injury. This article offers ways to prevent unsafe
wandering and to prepare for an emergency situation.
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Wandering can be aimless or purposeful roaming that can cause a
person to become lost, leave a safe environment, or intrude in
inappropriate places.
Wandering is one of the most frequent and challenging problems that
caregivers face.
Seven of every ten people with dementia will wander and become lost
during the course of the disease, and most will do so repeatedly.
Someone with Alzheimer's disease may not only wander by foot but
also by car or other mode of transportation.
Understanding Wandering
Wandering may
be triggered when a person with Alzheimer's:
- no longer
recognizes familiar people, places, and objects
- feels lost in a new
or changed environment
- tries to fulfill former
obligations, such as going to work or taking care of a child
- takes medications
that have side effects such as restlessness and confusion
- tries to relieve
stress caused by noise, crowds, or isolation .
- is restless due to
lack of physical activity
- is fearful of
unfamiliar sights, sounds, or hallucinations
- searches for
something specific such as food, drink, the bathroom, or
companionship
- looks for a way out
of the home
- experiences
confusion at certain times of the day or night
Preventing
Wandering
It is hard to predict when a person will wander and become lost.
However, caregivers can take steps to prevent wandering incidents.
Structure
the Day
Establishing a daily routine that includes meaningful activities
and sufficient physical exercise can help lessen wandering
behavior. Ask the person to help with simple household activities
such as sweeping the floor or folding clothes. Also try playing
familiar music and dancing or taking walks together outdoors.
Making
Your Home Safe
To prevent unsafe exits from the house or backyard, place door and
window locks out of sight and reach, either very high or very low.
Use a double-bolt door lock, and keep the key handy in case there
is an emergency. You may also want to:
- install high-tech
devices such as electronic buzzers or bells to signal when a
door is opened or place a pressure-sensitive mat at the door
or person's bedside that sounds an alarm to alert you to
movement.
- put hedges or a
fence around your patio or yard and be sure to place locks on
any gates.
Inform Your Community
Talk to
Your Neighbors
Alert your neighbors about the person's condition, and keep a list
of their names and telephone numbers. Ask that they call you if
they see the person outdoors without supervision. Also inform others
such as the doorman in your apartment building or staff in the
senior residence or retirement community where your loved one
resides.
Involve
Your Local Police
Tell your local police about your loved one's potential for
wandering. Advise them that the Alzheimer's Association has a
national Safe Return program to help police locate or return
someone who is lost from wandering.
Survey
the Neighborhood
Identify dangerous areas near the home, such as bodies of water,
open stairwells, dense foliage, tunnels, bus stops, high balconies,
and heavy traffic roads. Check these places first if someone
becomes lost.
Be
Prepared For A Wandering Incident
Take steps in advance to prepare yourself in the event that your
loved one becomes lost.
Gather Important Information
Having reliable
and accurate information will help those involved in a search:
- Post the
Alzheimer's Association checklist of what to do when the
person in your care becomes lost.
- Keep a list of the person's
age, height, weight, hair color, blood type, eye color,
identifying marks, medical condition, medication, dental work,
jewelry, allergies, and complexion.
- Make multiple
copies of a recent close-up photograph.
- Make a list of
places the person may go, such as familiar walking routes,
former neighborhoods, places of worship, workplaces, or
favorite places.
- Keep scented
clothing on hand to give to police. Wearing plastic gloves,
store a piece of the person's unwashed clothing in a bag where
it will not be disturbed. Replace it monthly to retain the
scent.
- Make a list of
possible dangerous areas you have identified in the
neighborhood.
Register
in the Safe Return Program
One of the most serious worries for a caregiver is whether the
wandering person will return home safely. The Alzheimer's
Association Safe Return program is the only nationwide system that
helps identify, locate, and return individuals with Alzheimer's and
related disorders who wander and become lost.
Safe
Return provides:
- Identification
products for the memory-impaired, including a bracelet or
necklace, clothing labels, and wallet ID card. These products
alert others that the individual is memory-impaired and may
need assistance and also list the Safe Return 24-hour crisis
number.
- Registration in a
national database including important information that can be
accessed quickly when someone wanders and gets lost. This
information can be critical in helping law enforcement
agencies and others in their search.
- Connection to more
than 200 community-based Alzheimer's Association Chapters
across the country that offer assistance and support. Some
chapters have scholarship programs to help pay for the
registration fee.
To
register:
Complete a Safe Return registration form. To obtain a copy, contact
your local Alzheimer's Association: call (800) 660-1993 or download the form from the Association's Web
site.
Tips to Prevent Wandering
- Check to see if the
person is hungry, needs to go to the bathroom, or feels
uncomfortable.
- Encourage movement
and exercise to reduce anxiety and restlessness.
- Involve the person
in daily activities such as folding laundry or preparing a
meal.
- Remind the person
that you know how to find him and that he's in the right
place.
- Reduce noise levels
and confusion.
- Reassure the person
who may feel lost, abandoned, or disoriented.
- Alert police ahead
of time that you care for a person with dementia.
- Make a plan of what
to do if the person becomes lost.
Additional
Resources
The following
materials are available from your local chapter or the national
office of the Alzheimer's Association:
- Just the Facts and
More-Wandering
- Steps to Planning
Activities: Structuring the Day at Home
- Steps to Enhancing
our Home: Modifying the Environment
- Steps to Enhancing
Communication: Interacting with Persons with
- Alzheimer's disease
- Services You May
Need Fact Sheet
- Safe Return
Brochure
- Alzheimer's
Disease: A Guide for Law Enforcement Officials
The Alzheimer's
Association is the only national voluntary organization dedicated
to conquering Alzheimer's disease through research and to providing
information and support to people with Alzheimer's disease, their
families, and caregivers.
Founded in 1980 by family caregivers, the Alzheimer's Association
has more than 200 chapters nationwide providing programs and
services, including support groups, to assist Alzheimer families in
their communities. The Association is the leading funding source
for Alzheimer's research after the federal government.
Information on Alzheimer's disease, current research, caregiving
techniques, and assistance for caregivers is available from the
Alzheimer's Association. For more information call: (800) 660-1993.
http://www.alzoc.org/support
How to Be a
Long-Distance Caregiver
I am miles away.
If you are caring for someone who lives far away, you are not
alone. Currently, more than six million Americans are long-distance
caregivers.
Long-distance caregiving for someone with Alzheimer's disease can
be especially difficult. Concerns about your loved one's safety,
nutrition, health and care may seem overwhelming. You may also feel
guilty and anxious because you cannot be there every day to see how
the person is doing. However, with the right mix of services,
ongoing coordination and support, long-distance caregiving can
work.
How can I help?
How do I know what services
are needed?
Visit the person with Alzheimer's disease to determine what kind of
assistance he or she may need. Make the following observation:
- Is there
appropriate and adequate food available?
- Is the person
eating regular meals?
- What is the
condition of the living environment? Has it changed?
- Are the bills paid?
- Do friends and
relatives visit regularly?
- Is the person
maintaining personal care routines such as bathing and
grooming?
- Is the person still
able to drive safely?
If you are unable to answer these questions, the person's
doctor, neighbors, family members and friends can be good
sources of information.
How do I make the most
of my visits?
Few long-distance caregivers are able to spend as much time
with their loved one as they would like. The key is to make
periodic visits and use your time effectively:
- Make appointments
with your loved one's physician, lawyer, and financial adviser
during your visit so you can facilitate the making of
important decisions.
- Meet with
neighbors, friends, and other relatives so they can share
their observations about how the person is doing. Ask if there
have been any behavioral changes, health problems, or safety
issues.
- Take time to
reconnect with your loved one by talking, listening to music ,
going for a walk, or doing other activities you enjoy together.
What support systems
are available?
There are many individuals and organizations that can help you
locate and arrange appropriate services for your loved one.
- Alzheimer's
Association chapters provide information on caregiving,
referrals to local services, a Helpline , and support groups.
To locate the chapter nearest you, call (800) 660-1993.
- Geriatric care
managers can help assess the individual's needs, identify
local services, and work with physicians, attorneys, and other
professionals to oversee and coordinate care. For more
information, call the National Association of Professional
Geriatric Care Managers at (520) 881-8008.
- Eldercare Locator
is a free service provided by the U.S. Administration on Aging
to help find local resources such as adult day programs,
respite care elder abuse/ protective agencies,
Medicaid/MediCal information, and transportation. To learn
more, call (800) 677-1116 or call your local Chapter.
- Home health care
workers can be hired to help the person with bathing,
toileting, preparing meals, and taking medication. Call your
local chapter of the Alzheimer's Association for more
information.
- The local Area
Agency on Aging (AAA) has services to help with long-distance
caregiving, such as home observation programs. Check with your
AAA to see what programs are available in your area.
Who else can I turn to
for support?
Establishing an informal support system can help ensure the
person's safety and give you peace of mind.
- Family members and
friends can provide companionship. Ask them to visit once a
week or so, depending on how far away they live.
- Neighbors can
regularly check on your loved one. Ask if they will remain
alert to anything unusual such as the smell of smoke or the
sound of an alarm coming from your relative's home.
- Community
organizations such as churches, synagogues, neighborhood
groups, and volunteer organizations often provide companion
services.
What if I need to take
time off from my job?
Sometimes you may need to take time off from work to resolve a
crisis, accompany your loved one to a doctor's appointment, or
address a pressing legal or financial matter.
With more than three million working Americans caring for
elderly parents, both government agencies and private
businesses are trying hard to meet the needs of caregivers.
The Family and Medical Leave Act (FMLA) entitles eligible
employees to take up to
twelve weeks unpaid leave. Check with your employee benefits
department to see if you are covered by FMLA. Also be sure to
ask them about the benefits provided by your state.
Should I move the
person with Alzheimer's disease to my home?
The decision to move the person to your home is influenced by
many factors. Here are some things to think about before moving
the person into your home:
- Does he or she want
to move? What about his or her spouse?
- Is your home
equipped for this person?
- Will someone be at
home to care for the person?
- How does the rest
of the family feel about the move?
- How will this move
affect your job, family and finances?
- What respite
services are available in your community to assist you?
Moving a person with Alzheimer's disease from familiar
surroundings may cause increased agitation and confusion. In
making the decision, you may want to talk with your loved
one's physician or a social worker or call your local
Alzheimer's Association chapter for assistance. In some
situations, an assisted living or a residential care setting
may be a better option for the individual.
What if I care for a
person who lives in a care facility?
Whether your loved one lives in an assisted living or
residential care facility, it is important to maintain ongoing
communication with the care staff and friends who visit
regularly. Here are some suggestions:
- Work with the
managing nurse and physician. Agree on a time when you can
call to get updates on the person's condition.
- Call family,
friends, or other visitors and ask for their observations.
- When you visit,
meet with the staff members who care for the person most.
What if I am not the
primary caregiver?
The primary caregiver may be a spouse, sibling, or another
relative that lives with or close to the person with
Alzheimer's. As a long-distance family member, supporting the
primary caregiver is one of the most important things you can
do. Here are some ways to help:
- Stay in close touch
with both the caregiver and the person with Alzheimer's
through telephone calls, cards, e-mail, etc.
- Recognize that the
primary caregiver must make final decisions. He or she
provides the daily care and is usually the best person to
decide what needs to be done.
-
Plan periodic visits
to give the caregiver a
break. You can spend
time with the individual
or run errands for the
caregiver.
How do I deal
with family conflicts?
It is possible that the
primary caregiver may
feel resentment toward
you for living far away
or believe you are not
helping enough. And you
may disagree with the
caregiver's decisions or feel shut out. To minimize conflicts, try to acknowledge these feelings and work through them. Here are some suggestions: >
- Recognize
differences. Some family members may be hands-on caregivers,
responding immediately to issues and organizing resources.
Others may be more comfortable with being told to complete
specific tasks.
Continue to
communicate. Periodic
family meetings or
conference calls keep
the family up-to-date
and involved. Discuss
how things are working,
reassess the needs of
both the person with
Alzheimer's and the caregiver, and decide if any changes in responsibilities are needed. >What additional resources are available?
The following resources are available from your local chapter or
the national office of the Alzheimer's Association:
- Respite Care guide: How
to Find What's Right for You
- Steps to
Understanding Legal Issues: Planning for the Future
- Steps to
Understanding Financial Issues: Resources for Caregivers
- Steps to Enhancing
Communication: Interacting with Persons with Alzheimer's
disease
- Residential Care: A
Guide for Choosing a New Home
The Alzheimer's Association is the only national voluntary
organization dedicated to conquering Alzheimer's disease
through research and to providing information and support to
people with Alzheimer's disease, their families, and
caregivers.
Founded in 1980 by family caregivers, the Alzheimer's
Association has more than 200 chapters nationwide providing
programs and services, including support groups, to assist
Alzheimer families in their communities. The Association is
the leading funding source for Alzheimer's research after the
federal government.
Information on Alzheimer's disease, current research,
caregiving techniques, and assistance for caregivers is
available from the Alzheimer's Association. For more information
or to locate the chapter nearest you call: (800) 660-1993.
http://www.alzoc.org/support
<<Back to Top>>
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Help for Patients and
Caregivers : Asthma
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|
This
website can help you learn how to control your asthma or help a
friend or family member with asthma. Asthma
Asthma
Is a Serious Lung Disease
Asthma makes the sides of the airways in your lungs inflamed or
swollen all the time. See the drawing below. Your airways react to
things like smoke, dust, pollen, or other things. Your airways
narrow or become smaller and you get common symptoms like those
listed in the box. Asthma that is not well controlled can cause
many problems. People miss work or school, go to the hospital, or
even die because of their asthma. But you do not have to put up
with the problems asthma can cause.
What
Causes Asthma?
The cause of
asthma is still unknown. From studying asthma patients, researchers
have concluded that the following factors can lead to asthma:
Genetic
Factors: Asthma has the tendency to run in families. It has not yet
been determined what genetic factors actually play a part in
determining if a person will be diagnosed with asthma. Individuals
who have allergies are more likely to have asthma as well.
Air
Quality: General environmental factors such as house dust mites in
bedding, carpet ad furnishings, exposure to tobacco smoke during
pregnancy or as a small child, and children who are exposed to
animals, pollens, molds and dust are more likely to have asthma.
The occupational environment also has a large influence on our
likelihood of having asthma. Pollens, molds, dust, gases and
chemicals can cause our airways to become weak. The following are
some examples of hazardous occupations likely to cause asthma:
manufacturing, woodworking, farming and working with chemicals.
Dietary
Changes: An increase in processed food, increase in salt intake,
decrease in antioxidant intake and the lack of fresh oily fish may
all increase the chances of cause asthma.
Lack of
exercise: In the 21st century there has been an increase in the
amount of television that is watched and a decrease in the amount
of physical activity. This decrease in physical activity can cause
a decrease in the strength of the airway passage causing the airway
muscles to abnormally contract when irritated by environmental
changes.
Your
Asthma Can Be Controlled With Proper Care
With your doctor’s help, you can control your asthma and
become free of symptoms most of the time. But your asthma does NOT
go away when your symptoms go away. You need to keep taking care of
your asthma.
Your asthma
cannot be cured—having asthma is a part of your life. So you
need to make taking care of your asthma a part of your life. This
is true even if your asthma is mild.
How To
Work With Your Doctor
- Agree on clear
treatment goals with your doctor. Your goal is to be able to
say “no” to all the questions in the box on
section titled, “Is Your Asthma Under Control?”
- Agree on what
things you need to do. Then do them.
- Ask questions until you feel you know what your doctor wants
you to do, when you should do it, and why. Tell your doctor if
you think you will have trouble doing what is asked. You can
work together to find a treatment plan that is right for you.
- Write down the things you are supposed to do before you
leave the doctor’s office, or soon after.
- Put up reminders to yourself to take your medicine on time.
Put these notes in places where you will see them.
- See your doctor at
least every 6 months to check your asthma and review your
treatment. Call for an appointment if you need one.
Prepare
a day or two before each doctor’s visit:
- Answer the
questions in “Is
Your Asthma Under Control?”. Talk to your doctor
about your answers. Also, talk about any changes in your home
or work that may have made your asthma worse.
- Write down
questions and concerns to discuss with your doctor. Include
ALL of your concerns, even those you think are not a big deal.
- Bring your
medicines and written action plan to each visit. If you use a
peak flow meter, bring it to each visit.
“The
doctor would ask me at each visit how little Jimmy’s asthma
was. I always forgot to mention some symptoms or other problems.
Now it’s different. Before we visit the doctor, I write down
when Jimmy had symptoms in the past 2 weeks. I also write down all
the questions I have. Now when I leave the doctor’s office, I
feel happy that I got all my issues addressed.”
- Deborah, mother of a
child with asthma
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Is Your Ashma Under Control?
Answer these questions by checking "yes" or
"no." Do this just before each doctor's visit.
In the past 2
weeks
|
|
1. Have you coughed, wheezed, felt short of breath, or had
chest tightness:
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|
- During the day?
|
_______ Yes
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_______ No
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- At night, causing
you to wake up?
|
_______ Yes
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_______ No
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- During or soon after
exercise?
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_______ Yes
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_______ No
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2. Have you needed more "quick-relief" medicine
than usual?
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_______ Yes
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_______ No
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3. Has your asthma kept you from doing anything you wanted
to do?
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_______ Yes
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_______ No
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If yes, what was it?
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|
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____________________________________________________________
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____________________________________________________________
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4. Have you asthma medicines caused you any problems, like
shakiness, sore throat, or upset stomach?
|
_______ Yes
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_______ No
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|
In the past few months:
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|
|
|
5. Have you missed school or work because of you asthma?
|
_______ Yes
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_______ No
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|
6. Have you gone to the emergency room or hospital because
of your asthma?
|
_______ Yes
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_______ No
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What Your Answers mean
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|
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- All "no" asnwers? - Your asthma is
under control.
- One or more
"yes" answers? - Something needs to be
done. Read the guide on how to get your asthma under control and
talk to your doctor.
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Taking
the Right Medicines at the Right Times
There are two main kinds of medicines for asthma:
(1) those that help with the long-term control of asthma and
(2) those that give short-term quick relief from asthma symptoms. See the list of brand
and generic names for asthma medicines.
Long-Term-Control
Medicines Are Taken Every Day To Control Asthma
Long-term-control medicines will prevent symptoms and control
asthma. But it often takes a few weeks before you feel the full
effects of this medicine.
Ask
your doctor about taking daily long-term-control medicine if you:
- Have asthma
symptoms three or more times a week, or
- Have asthma
symptoms at night three or more times a month.
If you need a
long-term-control medicine, you will need to keep taking your
medicine each day, even when you feel well. This is the only way
you can keep your asthma under control. Make taking your
long-termcontrol medicine a part of your daily routine—just
like eating, sleeping, and brushing your teeth.
The
Long-Term-Control Medicines
The most effective long-term-control medicines are those that
reduce swelling in your airways (inflammation). These medicines
include inhaled steroids, cromolyn, and nedocromil.
- Inhaled steroids
and steroid tablets or liquids are the strongest
long-term-control medicines. The steroids used for asthma are
NOT the same as the unsafe steroids some athletes take to
build muscles.
- Inhaled steroids
are used to prevent symptoms and control mild, moderate, and
severe asthma. Inhaled steroids are safe when taken at
recommended doses. This is because the medicine goes right to
your lungs where you need it. This reduces the amount of
medicine you need and the chance of any side effects.
- Steroid tablets or
liquids are used safely for short times to quickly bring
asthma under control. They are also used longer term to
control the most severe asthma.
- Cromolyn and
nedocromil are often the choice of medicine for children with
mild asthma.
- Inhaled long-acting
beta2- agonists are used to help control moderate-to-severe
asthma and to prevent nighttime symptoms. Long-acting
beta2-agonists do not reduce inflammation. Therefore, patients
taking this medicine also need to take inhaled steroids. Inhaled
longacting beta2-agonists should not be used for quick relief
of asthma attacks.
- Sustained-release
theophylline or sustained-release beta2- agonist tablets can
help prevent nighttime symptoms. These medicines are used with
inhaled steroids, nedocromil, or cromolyn. Theophylline is
sometimes used by itself to treat mild asthma. The dose for
theophylline must be checked over time to prevent side
effects.
- Zileuton and
zafirlukast are a more recent type of long-termcontrol
medicine. Studies so far show that it is used mainly for mild
asthma in patients 12 years of age and older.
Quick-Relief
Medicines Are Taken Only When Needed
Inhaled quick-relief medicine quickly relaxes and opens your
airways and relieves asthma symptoms. But it only helps for about 4
hours. Quick-relief medicine cannot keep symptoms from coming
back—only long-termcontrol medicines can do that.
Take
quick-relief medicine when you first begin to feel symptoms—
like coughing, wheezing, chest tightness, or shortness of breath.
Your doctor may tell you to use a peak flow meter to help you know
when to take your inhaled quickrelief medicines. Do not delay
taking your quickrelief medicine when you have symptoms. This can
keep you from having a really bad asthma attack. Tell your doctor
if you notice you are using more of this medicine than usual. This
is often a sign that your long-term-control medicine needs to be
changed or increased.
Make an
Action Plan With Your Doctor
Be sure you know when to take your medicine and what to do when
your asthma gets worse.
|
Asthma Medicines: Brand and Generic Names,
1997*
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Asthma Long-Term Control Medications
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Generic Name
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Brand Name
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Steroids: Inhaled
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belomethasone
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Beclovent®
Vanceril®, Vanceril®—Double
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|
Strength
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budesonide
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Pulmicort Turbuhalor®
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flunisolide
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AeroBid®, AeroBid-M®
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fluticasone
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Flovent®
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triamcinolone
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Azmacort®
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Cromolyn and Nedocromil: Inhaled
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cromolyn sodium
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Intal®
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nedocromil sodium
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Tilade®
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Leukotriene Modifiers: Tablets
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zafirlukast
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Accolate®
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zileuton
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Zyflo®
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Long-Acting Beta2-Agonists
|
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salmeterol (inhaled)
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Serevent®
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albuterol
|
Volmax®
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(extended release tablets)
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Proventil Repetabs ®
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Theophylline: Tablets or liquid
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Aerolate® III
Aerolate® JR
Aerolate® SR
Choledyl® SA
Elixophyllin®
Quibron®-T
Quibron®-T/SR
Slo-bid®
Slo-Phyllin®
Theo-24®
Theochron®
Theo-Dur®
Theolair®
Theolair®-SR
T-Phyl®
Uni-Dur®
Uniphyl®
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Asthma Quick-Relief Medications
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Generic Name
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Brand Name
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Short-Acting Beta2-Agonists: Inhaled
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|
albuterol
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Airet®
Proventil®
Proventil HFA®
Ventolin®
Ventolin® Rotacaps
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bitolterol
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Tornalate®
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pirbuterol
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Maxair®
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terbutaline
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Brethaire®
Brethine® (tablet only)
Bricanyl® (tablet only)
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Anticholinergics: Inhaled
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ipratropium bromide
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Atrovent®
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Steroids: Tablets or liquids
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methylprednisolone
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Medrol®
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prednisone
|
Prednisone
Deltasone®
Orasone®
Liquid Pred®
Prednisone Intensol®
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|
prednisolone
|
Prelone®
Pediapred®
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* This glossary is a complete list of brand names
associated with the appropriate generic names of asthma
medications, as listed in the United States Pharmacopeial
Convention, Inc., Approved Drug Products and Legal
Requirements, Volume III, 17th edition, 1997, and the USP DI
Drug Information for Health Care Professionals, Volume I, 17th
edition, 1997. This list does not constitute an endorsement of
these products by the National Heart, Lung, and Blood
Institute.
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How to Use Your Metered-Dose Inhaler the Right Way
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|
Using an inhaler seems
simple, but most patients do not use it the right way. When you use
your inhaler the wrong way, less medicine gets to your lungs.
(Your doctor may give you other types of inhalers.)
For the next 2 weeks, read these
steps aloud as you do them or ask someone to read them to you.
Ask your doctor or nurse to check how well you are using your
inhaler.
Use your inhaler in one of the
three ways pictured below (A or B are best, but C can be used if
you have trouble with A and B).
|
|
Steps for Using Your Inhaler
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|
|
Getting
Ready
|
1. Take off the cap and shake the inhaler.
2. Breathe out all the way.
3. Hold your inhaler the way your doctor said (A, B, or C below).
|
|
Breathe in
slowly
|
4. As you start breathing in slowly through your mouth,
press down on the inhaler one time. (If you use a holding
chamber, first press down on the inhaler. Within 5 seconds, begin
to breathe in slowly.)
5. Keep breathing in slowly, as deeply as you can.
|
|
Hold your
breath
|
6. Hold your breath as you count to 10 slowly, if you can.
7. For inhaled quick-relief medicine (beta2-agonists), wait about
1 minute between puffs. There is no need to wait between puffs
for other medicines.
|
|
A. Hold inhaler 1 to 2 inches in front of your mouth
(about the width of two fingers).
|
B. Use a spacer/holding chamber. These come in
many shapes and can be useful to any patient.
|
C. Put the inhaler in your mouth. Do not use for steroids.
|
|
|
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Clean Your Inhaler as Needed
Look at the hole where the medicine sprays out from your inhaler.
If you see “powder” in or around the hole, clean the
inhaler. Remove the metal canister from the L-shaped plastic
mouthpiece. Rinse only the mouthpiece and cap in warm water. Let
them dry overnight. In the morning, put the canister back inside.
Put the cap on.
|
Know When To Replace Your Inhaler
For medicines you take each day (an example): Say your new
canister has 200 puffs (number of puffs is listed on canister)
and you are told to take 8 puffs per day.
So this canister will last 25 days. If you started using this
inhaler on May 1, replace it on or before May 25.
You can write
the date on your canister. For quick-relief medicine take as
needed and count each puff.
Do not put
your canister in water to see if it is empty. This does not work.
|
|
How to Use Your Peak Flow Meter
|
|
A peak flow meter helps you check how well your asthma is
controlled. Peak flow meters
are most helpful for people with moderate or severe asthma.
This guide will tell you (1) how to find your personal best peak
flow number, (2) how to use your personal best number to set your
peak flow zones, (3) how to take your peak flow, and (4) when to
take your peak flow to check your asthma each day.
|
|
Starting Out: Find Your Personal Best
Peak Flow
Number
|
|
To find your personal best peak flow number, take your
peak flow each day for 2 to 3 weeks. Your asthma should be under
good control during this time. Take your peak flow as close to
the times listed below as you can. These times for taking your
peak flow are only for finding your personal best peak
flow.
- Between noon and
2:00 p.m. each day
- Each time you
take your quickrelief medicine to relieve symptoms (measure
your peak flow after you take your medicine)
- Any other time
your doctor suggests
Write down
the number you get for each peak flow reading. The highest peak
flow number you had during the 2 to 3 weeks is your personal
best.
Your personal
best can change over time. Ask your doctor when to check for a
new personal best.
To check your
asthma each day, you will take your peak flow in the morning.
This is discussed in the coming text.
|
|
Your Peak Flow Zones
|
Your peak flow zones are based on your personal best peak flow
number. The zones will help you check your asthma and take the
right actions to keep it controlled. The colors used with each
zone come from the traffic light.
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|
Green Zone (80 to 100 percent of
your personal best) signals good control. Take your usual daily
long-term-control medicines, if you take any. Keep taking these
medicines even when you are in the yellow or red zones.
|
|
|
Yellow Zone (50 to 79 percent of
your personal best) signals caution: your asthma is getting
worse. Add quick-relief medicines. You might need to increase
other asthma medicines as directed by your doctor.
|
|
|
Red Zone (below 50 percent of
your personal best) signals medical alert! Add or increase
quick-relief medicines and call your doctor now.
|
|
Ask your doctor to write an action plan for
you that tells you:
- The peak flow
numbers for your green, yellow, and red zones. Mark the
zones on your peak flow meter with colored tape or a marker.
- The medicines you
should take while in each peak flow zone.
How To
Take Your Peak Flow
- Move the marker
to the bottom of the numbered scale.
- Stand up or sit
up straight.
- Take a deep
breath. Fill your lungs all the way.
- Hold your breath
while you place the mouthpiece in your mouth, between your teeth.
Close your lips around it. Do not put your tongue
inside the hole.
- Blow out as hard
and fast as you can. Your peak flow meter will measure how
fast you can blow out air.
- Write down the
number you get. But if you cough or make a mistake, do not
write down the number. Do it over again.
- Repeat steps 1
through 6 two more times. Write down the highest of the
three numbers. This is your peak flow number.
- Check to see
which peak flow zone your peak flow number is in. Do
the actions your doctor told you to do while in that zone.
Your doctor
may ask you to write down your peak flow numbers each day. You
can do this on a calendar or other paper. This will help you and
your doctor see how your asthma is doing over time.
Checking
Your Asthma: When To Use Your Peak Flow Meter
- Every morning
when you wake up, before you take medicine. Make this
part of your daily routine.
- When you are
having asthma symptoms or an attack. And after taking
medicine for the attack. This can tell you how bad your
asthma attack is and whether your medicine is working.
- Any other time
your doctor suggests. If you use more than one peak flow
meter (such as at home and at school), be sure that both
meters are the same brand.
Bring
to Each of Your Doctor’s Visits:
- Your peak flow
meter.
- Your peak flow
numbers if you have written them down each day.
Also, ask
your doctor or nurse to check how you use your peak flow
meter—just to be sure you are doing it right.
How
to Control Things That Make Your Asthma Worse
You can help prevent asthma attacks by staying away from things
that make your asthma worse. This guide suggests many ways to
help you do this.
You
need to find out what makes your asthma worse. Some things
that make asthma worse for some people are not a problem for
others. You do not need to do all of the things listed in this
guide.
Look at the
things listed in dark print below. Put a check next to the ones
that you know make your asthma worse. Ask your doctor to help you
find out what else makes your asthma worse. Then, decide with
your doctor what steps you will take. Start with the things in
your bedroom that bother your asthma. Try something simple
first.
|
Tobacco Smoke
- If you smoke,
ask your doctor for ways to help you quit. Ask family
members to quit smoking, too.
- Do not allow
smoking in your home or around you.
- Be sure no one
smokes at a child’s day care center.
Smoke,
Strong Odors, and Sprays
- If possible, do
not use a wood-burning stove, kerosene heater, or
fireplace.
- Try to stay
away from strong odors and sprays, such as perfume, talcum
powder, hair spray, and paints.
Indoor
Mold
- Fix leaky
faucets, pipes, or other sources of water.
- Clean moldy
surfaces with a cleaner that has bleach in it.
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Dust Mites
Many people with asthma are allergic to dust mites. Dust mites
are like tiny “bugs” you cannot see that live in
cloth or carpet.
Things
that will help the most:
- Encase your
mattress in a special dust-proof cover.*
- Encase your
pillow in a special dust-proof cover* or wash the pillow each
week in hot water. Water must be hotter than 1300F to kill
the mites.
- Wash the sheets
and blankets on your bed each week in hot water.
Other
things that can help:
- Reduce indoor
humidity to less than 50 percent. Dehumidifiers or central
air conditioners can do this.
- Try not to
sleep or lie on cloth-covered cushions or furniture.
- Remove carpets
from your bedroom and those laid on concrete, if you can.
- Keep stuffed
toys out of the bed or wash the toys weekly in hot water.
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Animal Dander
Some people are allergic to the flakes of skin or dried saliva
from animals with fur or feathers.
The
best thing to do:
- Keep furred or
feathered pets out of your home.
If you
can’t keep the pet outdoors, then:
- Keep the pet out
of your bedroom and keep the bedroom door closed.
- Cover the air
vents in your bedroom with heavy material to filter the
air.*
- Remove carpets
and furniture covered with cloth from your home. If that is
not possible, keep the pet out of the rooms where these
are.
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Cockroach
Many people with asthma are allergic to the dried droppings and
remains of cockroaches.
- Keep all food
out of your bedroom.
- Keep food and
garbage in closed containers (never leave food out).
- Use poison
baits, powders, gels, or paste (for example, boric acid).
You can also use traps.
- If a spray is
used to kill roaches, stay out of the room until the odor
goes away.
Vacuum
Cleaning
- Try to get
someone else to vacuum for you once or twice a week, if
you can. Stay out of rooms while they are being vacuumed
and for a short while afterward.
- If you vacuum,
use a dust mask (from a hardware store), a double-layered
or microfilter vacuum cleaner bag,* or a vacuum cleaner
with a HEPA filter.*
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Pollen and Outdoor Mold
What to do during your allergy season (when pollen or mold
spore counts are high):
- Try to keep
your windows closed.
- Stay indoors
with windows closed during the midday and afternoon, if
you can. Pollen and some mold spore counts are highest at
that time.
- Ask your doctor
whether you need to take or increase anti-inflammatory
medicine before your allergy season starts.
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Exercise, Sports, Work, or Play
- You should be
able to be active without symptoms. See your doctor if you
have asthma symptoms when you are active—like when
you exercise, do sports, play, or work hard.
- Ask your doctor
about taking medicine before you exercise to prevent
symptoms.
- Warm up for
about 6 to 10 minutes before you exercise.
- Try not to work
or play hard outside when the air pollution or pollen
levels (if you are allergic to the pollen) are high.
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Other Things That Can Make Asthma Worse
- Flu: Get a flu
shot.
- Sulfites in
foods: Do not drink beer or wine or eat shrimp, dried
fruit, or processed potatoes if they cause asthma
symptoms.
- Cold air: Cover
your nose and mouth with a scarf on cold or windy days.
- Other
medicines: Tell your doctor about all the medicines you
may take. Include cold medicines, aspirin, and even eye
drops.
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Contact
These Groups to Learn More About Asthma:
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<<Back to Top>>
Help for Patients and
Caregivers : Breast Cancer
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What is Breast Cancer?
Breast
cancer is the most common cancer occurring in women (excluding
cancers of the skin) and the second most common cause of death from
cancer in women after lung cancer. Men can also develop breast
cancer, but male breast cancer is rare, accounting for less than 1%
of all breast cancer cases. If diagnosed at an early stage, breast
cancer has an encouraging cure rate: up to 97% of women diagnosed
with localized breast cancer will survive five years after their
diagnosis. Even if the cancer is found at a more advanced stage,
new therapies have enabled many people with breast cancer to
experience a good quality of life.
The breast is
comprised mainly of fatty tissue. Within this tissue is a network
of lobes, which are made up of tiny, tube-like structures (called
lobules) that contain milk glands. Tiny ducts connect the glands,
lobules, and lobes and carry the milk from the lobes to the nipple,
located in the middle of the areola (darker area that surrounds the
nipple of the breast). Blood and lymph vessels run throughout the
breast; blood nourishes the cells, and the lymph system drains
bodily waste products.
The
main forms of breast cancer are:
- Invasive ductal
carcinoma — This type of breast cancer
develops in the milk ducts and accounts for about 79 percent
of cases. It can break through the duct wall and invade the
breast's fatty tissue, then metastasize (spread) to other
parts of the body through the bloodstream or lymphatic system.
- Invasive lobular
carcinoma — This type of breast cancer
accounts for about 10 percent of cases and originates in the
breast's milk-producing lobules. It also can spread to the
breast's fatty tissue and other places in the body.
- Medullary, mucinous
and tubular carcinomas — These are three
slow-growing types of breast cancer. Together they represent
about 10 percent of all breast cancers.
- Paget's disease — This type
represents about 1 percent of breast cancers. It starts in the
milk ducts of the nipple and can spread to the areola (dark
circle around the nipple). Women who get Paget's disease
usually have a history of nipple crusting, scaling, itching or
inflammation.
- Inflammatory
carcinoma —This type accounts for about 1
percent of all cases. Of all breast cancers, inflammatory
carcinoma is the most aggressive and difficult to treat,
because it spreads so quickly.
- Ductal carcinoma in
situ (DCIS) — DCIS occurs when cancer cells fill
the ducts but haven't yet spread through the walls into fatty
tissue. Nearly all women diagnosed at this early stage can be
cured. Without treatment, about 25 percent of DCIS cases will
lead to invasive breast cancer within 10 years.
- Lobular carcinoma
in situ (LCIS) — LCIS is less common and less of a
threat than DCIS. It develops in the breast's milk-producing
lobules. LCIS doesn't require treatment, but it does increase
a woman's risk of developing breast cancer.
Common
Symptoms?
A woman who has breast cancer may have no problems, or she may find
a painless lump in her breast. If women examine their breasts
monthly, they can help find lumps or other changes that a doctor
should examine.
Most breast
lumps are not cancer, but all lumps should be checked out by a
doctor to be sure. Non cancerous breast lumps may be scar tissue or
cysts (fluid-filled lumps or sacs) or they can be due to normal
breast changes associated with hormone changes or aging.
Symptoms
of breast cancer include:
- A lump or
thickening in the breast or under the arm
- A clear or bloody
discharge from the nipple
- Persistent crusting
or scaling of the nipple
- Inverted nipples
- Redness or swelling
of the breast
- Dimpling on the
breast skin resembling the texture of an orange
- A change in the
contours of the breast, such as one being higher than the
other
- A sore or ulcer on
the skin of the breast that does not heal
What
Causes Breast Cancer?
Many cases of breast cancer occur in women with no obvious risk
factors. This means that women need to be alert in watching for
possible changes in their breasts, performing self-examinations,
and scheduling clinical breast examinations and mammograms. It is
likely that multiple risk factors influence the development of
breast cancer. Some of these include:
Age. The risk of developing
breast cancer increases as a woman ages, with the majority of
breast cancers developing in women over the age 50. At age 30, a
woman's risk of developing breast cancer is one in 2,525. By age
50, her chances are one in 50, rising to one in 14 by age 70.
Race. Although white women
are more likely to develop breast cancer, black women are more
likely to die from the disease. The reasons for this are unclear
and probably involve both socioeconomic and biologic factors.
Previous
history of breast cancer. Women who have had breast cancer in one
breast have three to four times the risk of breast cancer in their
opposite breast.
A
history of endometrial or ovarian cancer. The development of
these cancers is also associated with exposure to hormones and,
therefore, a woman's risk of breast cancer may also be increased.
Some BRCA1 or BRCA2 gene mutations may also increase the risk of
both ovarian and breast cancers.
A
family history of breast cancer. Women who have a
first-degree relative (mother, sister, daughter) diagnosed with
breast cancer are at increased risk of the disease. More than one
first-degree relative with breast cancer elevates that risk.
A
genetic predisposition. Mutations to the BRCA1 or BRCA2 genes are
associated with increased breast cancer risk. Screening tests are
available to test for known mutations to these genes, but are not
recommended for everyone and only following appropriate genetic
counseling. Researchers estimate that breast cancers caused by
these genes make up only 2% to 3% of all breast cancers.
Estrogen
exposure. Estrogen is a hormone in women that controls the
development of secondary sex characteristics (such as breast
development). A woman's production of estrogen decreases at menopause.
Doctors think that exposure to estrogen for a long time may
increase breast cancer risk:
- A long menstrual
history: Women who began menstruating before age 12 or went
through menopause after age 55 have a higher risk of breast
cancer because their breast cells have been exposed to
estrogen for longer periods of time.
- Late or no
pregnancies: Women who have their first pregnancy after age
30 or who have never had a full-term pregnancy have a higher
risk of breast cancer. Pregnancy may protect against breast
cancer because it pushes breast cells into their final phase
of maturation.
- Estrogen in
medication: Recent use of oral contraceptives or hormone
replacement therapy (HRT), or long-term use of HRT, may
increase a woman's risk of breast cancer.
Atypical
hyperplasia. This is a condition characterized by abnormal,
but not cancerous, cells. Atypical hyperplasia is a risk factor of
breast cancer.
Lobular
carcinoma in-situ. This is associated with an increased risk of
developing a cancer in either breast when found within an otherwise
benign breast biopsy.
Lifestyle
factors. As with other types of cancer, studies continue to show
that various habits may contribute to the development of breast
cancer. These include:
- Obesity: According
to a new study, being obese or even overweight increases a
woman's risk of breast cancer.
- Lack of exercise:
Exercise lowers hormone levels and boosts the immune system;
lack of exercise contributes to obesity.
- Alcohol use:
Drinking more than one alcoholic drink per day may raise the
risk of breast cancer.
Radiation. High doses of
radiation may increase a woman's risk of breast cancer. An
increased risk of breast cancer has been observed in long-term
survivors of atomic bombs, patients with lymphoma treated with
radiation therapy to the chest, patients undergoing large numbers
of x-rays for tuberculosis or non-malignant conditions of the
spine, and children treated with radiation for tinea capitis
(ringworm).
Treatments
for Breast Cancer
Even though the doctor will tailor the treatment for breast cancer
to the patient's disease and personal situation, there are some
general steps in the logic of treating the disease. Primarily, the
initial therapy for early stage disease is aimed at eliminating any
visible tumor. Therefore, doctors will recommend surgery to remove
the tumor with or without radiation therapy.
The next step
in the management of early stage disease is to reduce the risk of
the disease recurring and to eliminate any cancer cells that may
remain. If a tumor is of a certain size or lymph nodes are
involved, the doctor may recommend additional therapy, such as
radiation therapy, chemotherapy, or hormonal therapy. If the cancer
recurs, the patient may choose additional surgery, depending on
where the cancer is found, or a variety of treatments designed to
fight distant metastases.
Surgery
Generally, the
smaller the tumor, the more surgical options a patient has. The
general types of surgery include the following:
- Lumpectomy - A lumpectomy
removes the tumor and a small "clean," or
disease-free, margin of tissue around the tumor. Follow-up
radiation therapy is given to the disease site.
- Partial Mastectomy - A partial
mastectomy removes the tumor, an area of normal tissue, and
part of the lining over the chest muscle where the tumor was.
This surgery is similar to a lumpectomy. It is also called a
segmental mastectomy and requires follow-up radiation.
- Modified Radical
Mastectomy - A modified radical mastectomy removes
the breast, some of the underarm lymph nodes, and the lining
over the chest muscles.
- Total Mastectomy - A total
mastectomy removes the entire breast, leaving the underarm
lymph nodes intact. This surgery is also called simple
mastectomy.
- Radical Mastectomy - A radical mastectomy
removes the breast, chest muscles, all lymph nodes under the
arm, and additional fat and skin. It used to be the standard
surgical treatment for breast cancer, but is an uncommon
procedure today. About 15% of women who have had radical
mastectomies experience lymphedema, the buildup of fluid in
the lymph system.
Women are
encouraged to talk with their doctors about which surgical option
is right for them. More aggressive surgery is not always better and
may result in additional complications.
Choosing
Between Lumpectomy and Mastectomy
One
advantage of lumpectomy is that it saves the way the breast looks.
A downside is the need for several weeks of radiation after
surgery. But some women who have a mastectomy will still need
radiation. For most women with stage I or II breast cancer,
lumpectomy or partial mastectomy (along with radiation) is as good
as mastectomy. There is no difference in the survival rates of
women treated with these 2 methods. Other factors, though, can
affect which type of surgery is best for you. And lumpectomy is not
an option for all women with breast cancer. Your doctor can tell
you if there are reasons why a lumpectomy is not right for you.
Possible side
effects of mastectomy and lumpectomy include infection and blood or
fluid collecting at the place where the incision is made. If lymph
nodes are removed, there could be other side effects as well such
as swelling of the arm (lymphedema).
Radiation
Therapy and Chemotherapy are often used after lumpectomy or
mastectomy to make sure that all the cancer cells are destroyed and
do not grow back.
- Radiation therapy
almost always is recommended after lumpectomy to destroy any
cancer cells left behind and to prevent the cancer from
returning. Without radiation therapy, the odds of the cancer
returning increase by about 25 percent.
- The need for
Chemotherapy depends on how much the cancer has spread. In
some cases, chemotherapy will be recommended before surgery to
shrink a large tumor so that it can be removed more easily. Chemotherapy
is almost always necessary if cancer recurs. A form of
chemotherapy called hormonal chemotherapy usually is
recommended when the pathology report shows that the cancer is
estrogen-receptor positive.
After Treatment
After the first course of treatment is finished, it is very
important to keep all follow-up visits to your doctor. Be sure and
tell the doctor about any symptoms or side effects that concern
you.
Lymphedema is a
swelling of the arm caused by fluid build up that may occur after
treatment for breast cancer. It's hard to tell which women will
develop lymphedema. It can happen right after surgery, or months or
even years later.
With care,
lymphedema can often be avoided or kept under control. Injury or
infection of the arm on the affected side can cause lymphedema or
make it worse. Tell your doctor right away about any swelling,
tightness, or injury to the hand or arm. There are ways to help
prevent problems. More information about lymphedema is available
through our toll-free number or on our Web site.
Treatment for
breast cancer can affect the pleasure from touching the breast. In
a reconstructed breast, the feeling of pleasure from touching the
nipple is largely lost because a preserved or rebuilt nipple has
much less feeling than a natural one. The skin of the breast itself
may be less sensitive, too. Some feeling can return after time,
though.
About
Breast Forms and Bras
Some
women who have had a mastectomy might choose breast forms instead
of reconstruction. Your doctor will tell you when you are ready to
be fitted for a permanent form. Prices of forms vary quite a bit.
Take time to shop for one that looks good and fits well.
The right bra
for you may very well be the one you have always worn. You can
often have your usual bra adapted for a breast form. Be sure to
check your insurance to see what is covered and how to file a
claim. Also, ask your doctor to write prescriptions for your form
and any special bras. When buying the forms or bras, have the bills
marked "surgical."
Be aware that
if you submit an insurance claim for a form or a bra, the company
might not also cover reconstruction if you decide you want this
procedure in the future. Get all the facts before turning in any
claims.
Pregnancy
In the
past, many doctors advised breast cancer survivors not to become
pregnant for at least 2 years after treatment. Although only a few
studies have been done, nearly all have found that pregnancy does
not increase the risk of the cancer coming back after successful
treatment. If you are thinking about getting pregnant, be sure to
discuss the issue with your doctor. Sometimes counseling can help
you sort out the complex issues about motherhood and breast cancer
survivorship.
Additional Information
National
Organizations and Web Sites
Encore
Plus Program of the YWCA
Office of Women's Health Initiatives
Telephone: 800-953-7587 or 202-467-0801
Call to find a program in your area.
National
Breast Cancer Coalition
1101 17th Street, NW, Suite 1300Washington, DC 20036
Telephone: 800-622-2838 or 202-296-7477
Internet Address: www.natlbcc.org
National
Cancer Institute (NCI)
Telephone: 1-800-4-CANCER
Internet Address: www.cancer.gov
Susan G.
Komen Breast Cancer Foundation
Telephone: 800-IM-AWARE or 1-800-462-9273
Internet Address: www.komen.com
Y-ME
National Breast Cancer Hotlines
Telephone: 1-800-221-2141 (English), 1-800-986-9505
(Spanish)Internet Address: www.y-me.org
Centers
for Disease Control and Prevention (CDC) DES Update
Telephone: 1-888-232-6789
Internet Address: www.cdc.gov/des
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Help for Patients and
Caregivers : Congestive Heart Failure
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What is Congestive Heart
Failure?
Congestive
heart failure (CHF), or heart failure, is a condition in which the heart
can't pump enough blood to the body's other organs. This can result
from
- narrowed arteries
that supply blood to the heart muscle — coronary artery
disease.
- past heart attack,
or myocardial infarction, with scar tissue that interferes
with the heart muscle's normal work.
- high blood
pressure.
- heart valve disease
due to past rheumatic fever or other causes.
- primary disease of
the heart muscle itself, called cardiomyopathy.
- heart defects
present at birth — congenital heart defects.
- infection of the heart
valves and/or heart muscle itself — endocarditis and/or
myocarditis.
The
"failing" heart keeps working but not as efficiently as
it should. People with heart failure can't exert themselves because
they become short of breath and tired.
As blood flow
out of the heart slows, blood returning to the heart through the
veins backs up, causing congestion in the tissues. Often swelling
(edema) results. Most often there's swelling in the legs and
ankles, but it can happen in other parts of the body, too. Sometimes
fluid collects in the lungs and interferes with breathing, causing
shortness of breath, especially when a person is lying down.
About five
million Americans are living with heart failure, and between
400,000 and 700,000 new cases are diagnosed every year. Heart
failure is serious and can be life-threatening. About 250,000
people die annually of heart failure.
Common
Symptoms?
Shortness
of breath - If you have congestive heart failure, you may have
difficulty breathing, especially when you lie down. This happens
because you have to work a little harder to breath when you lie
down because of the fluid in your lungs. You may awaken at night
short of breath and have to sit or stand up to get relief. You may
find yourself more comfortable with your head and chest elevated.
As the buildup of fluid in the lungs become very severe, you may
cough up frothy, pink liquid.
Exercise
Intolerance - You may find yourself unable to tolerate
exercise or even mild physical exertion. This happens because a
failing heart cannot pump quite enough blood to provide all the
oxygen and other nutrients your body needs while it is exercising.
Your ability to exercise, even to walk at a normal pace, may be
limited by feeling tired (fatigue) and shortness of breath.
Fluid
Retention and Swelling - You may notice puffy swelling (edema) in
your legs, feet, and ankles. Often, the swelling is more noticeable
in the ankles or on the lower leg in the front where the bone is
close to the skin. If you press down on the skin in the puffy
areas, the indentation where your finger pressed may be visible for
a few minutes. This swelling may be so severe as to reach up to the
hips.
What
Causes Congestive Heart Failure?
Heart failure
often occurs because other cardiac conditions have damaged or weakened
your heart, forcing it to work harder. A weakened heart can't pump
blood efficiently throughout your body. This causes blood to pool
in your legs, feet and ankles, your kidneys to retain excess water
and sodium, and fluid to back up into your lungs, leading to
shortness of breath.
Heart failure
often results from the stress of a heart attack, high blood
pressure, or other forms of heart disease such as valve disorders.
In fact, all of the behaviors that you probably associate with
heart attack or heart disease — such as smoking, being
overweight, eating foods high in cholesterol and fat, and not
exercising — also cause or contribute to heart failure.
Sometimes, your heart becomes weakened without explanation, a
condition known as idiopathic dilated cardiomyopathy.
If you have
heart failure, chances are you've had one or more of the following
conditions:
- Hypertension (high
blood pressure)
- Coronary Artery
Disease
- Heart attack
- Faulty heart valves
- Cardiomyopathy
- Heart defects present
at birth (congenital heart defects)
- Abnormal heart
rhythms (heart arrhythmia)
Treatments
for Congestive Heart Failure
If you have
heart failure, your doctor will monitor you closely. This means
having follow up appointments at least every 3 to 6 months,
figuring out any underlying cause and treating it, and periodic
testing of your heart function. For example, an ultrasound of your
heart, called an echocardiogram, will be done once in awhile to
give an estimate of how well your heart is pumping blood with each
stroke or beat.
It is also your
responsibility to carefully monitor yourself and help manage your
condition. One important way to do this is to track your weight on
a daily basis. Weight gain can be a sign that you are retaining
fluid and that the pump function of your heart is worsening. Make
sure you weigh yourself at the same time each day and on the same
scale, with little to no clothes on.
Other
important measures include:
- Take your
medications as directed. Carry a list of medications with you
wherever you go.
- Limit salt and
sodium intake.
- Don’t smoke.
- Stay active. For
example, walk or ride a stationary bicycle. Your doctor can
provide a safe and effective exercise plan based on your
degree of heart failure and how well you do on tests that
check the strength and function of your heart. DO NOT exercise
on days that your weight has gone up from fluid retention or
you are not feeling well.
- Lose weight if you
are overweight.
- Get enough rest,
including after exercise, eating, or other activities. This
allows your heart to rest as well. Keep your feet elevated to
decrease swelling.
Medications
Medications
that your doctor will consider prescribing include:
- ACE inhibitors such
as captopril and enalapril -- these medications open up blood vessels
and decrease the work load of the heart. These have become an
important part of treatment
- Diuretics -- there
are several types including thiazide, loop diuretics, and
potassium-sparing diuretics; they help rid your body of fluid
and sodium.
- Digitalis
glycosides -- increase the ability of the heart muscle to
contract properly; prevent heart rhythm disturbances
- Angiotensin
receptor blockers (ARBs) such as losartan and candesartan
which, like ACE inhibitors, reduce the workload of the heart;
this class of drug is especially important for those who
cannot tolerate ACE inhibitors
- Beta-blockers --
this is particularly useful for those with a history of
coronary artery disease
Additional Information
American
Heart Association (AHA)
7272 Greenville Ave.
Dallas, TX 75231
Toll-Free: (800) 242-8721
Fax: (214) 706-2139
http://www.americanheart.org/
National
Heart, Lung and Blood Institute (NHLBI)
6701 Rockledge Dr.
P.O. Box 30105
Bethesda, MD 20824-0105
Phone: (301) 592-8573
http://www.nhlbi.nih.gov/
http://www.mayoclinic.com/
http://www.emedicinehealth.com/
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<<Back to Top>>
Help for Patients and
Caregivers : COPD
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What is Chronic Obstructive Pulmonary Disease?
Chronic
obstructive pulmonary disease, or COPD, is an umbrella term for two
respiratory illnesses -- chronic bronchitis and/or emphysema. There
are 16 million Americans who have been diagnosed with COPD, of whom
14 million have chronic bronchitis and 2 million have emphysema.
COPD results
primarily from smoking tobacco. Years of smoking cause damage to
the airways in the lungs. This lung damage continues to progress
with the use of tobacco. Average current and former smokers will
likely not notice or acknowledge symptoms for several years.
Typically, they will begin noticing the first symptoms of shortness
of breath when they reach their 40s. However, earlier signs of COPD
are often present. These include chronic cough and increased mucus
production. Recognizing these early signs is important because
lifestyle modifications, such as smoking cessation and avoiding
respiratory irritants, can be made to prevent additional damage to
the airways.
In technical
terms, COPD is a slowly progressive disease that is characterized
by a decrease in the ability of the lungs to maintain the body's oxygen
supply and remove carbon dioxide.[8] As a result of this decrease
in lung function, COPD patients alter their lifestyles because they
become short of breath after minimal exertion. For example, instead
of climbing a flight of stairs COPD patients take the elevator.
Physical activities also take longer to complete. Lawn mowing that
a COPD patient might have finished in 40 minutes only a year ago
may now take an hour to do.
Common
Symptoms?
- breathlessness even
after mild exertion
- chronic coughing, which
may or may not produce mucus
- frequent clearing
of the throat
- chest tightness
- wheezing
Because COPD is
a progressive disease, patients may attribute early symptoms to
aging or being out of shape. They may also believe they only have a
benign smoker's cough.
Although
symptoms of COPD may be present earlier, people are typically
diagnosed with COPD when they are older than 45 and have at least a
20 pack-year smoking history.[3] Pack-years are calculated by
dividing the number of cigarettes smoked per day by 20 (the number
of cigarettes in a pack) and multiplying this figure by the number
of years a person has smoked. For example, a person who smokes 40
cigarettes a day and has smoked for 10 years would have a 20
pack-year smoking history:
(40 cigarettes per day ÷ 20 cigarettes per pack = 2) ( 2 x 10 years
of smoking = 20 pack-year history).
What
Causes COPD?
- Cigarette, Pipe,
cigar and other types of tobacco smoking
- Passive exposure to
cigarette smoking
- Occupational dusts
and chemicals
- Air pollution
- Genetic factors
(less than 5 percent of cases).
Treatments
for COPD
Treatment for
COPD includes inhalers that dilate the airways (bronchodilators)
and sometimes theophylline. The COPD patient must stop smoking. In some
cases inhaled steroids are used to suppress lung inflammation, and,
in severe cases or flare-ups, intravenous or oral steroids are
given.
Antibiotics are
used during flare-ups of symptoms as infections can worsen COPD.
Chronic, low-flow oxygen, non-invasive ventilation, or intubation
may be needed in some cases. Lung volume reduction surgery for COPD
is a surgical therapy currently being evaluated in a large,
national trial. Lung transplant is sometimes performed for severe
cases.
Living With COPD
Avoid
Potential Irritants -
Both airborne
irritants (for example, from cigarette smoke) and infections (for
example, the flu) can increase mucus in the airways. For someone
with chronic obstructive pulmonary disease (COPD), this makes it
harder to breathe and can lead to a hospital visit.
Exercise
And Eat Well -
Exercise and
good nutrition are important parts of maintaining optimal health
for everyone, but especially if you have COPD. Keeping your muscles
and lungs strong will make it easier to breathe. Maintaining a
proper diet helps maintain your energy and wards off potential
infections. As with exercise, establishing good eating habits
— for example, consuming plenty of fruits and vegetables
— will only help your health.
Control
Your Coughing And Breathing
Controlled
breathing methods and controlled coughing can help you breathe
easier.
Additional Information
http://www.aarc.org/
American
Lung Association
1740 Broadway
New York, NY 10019
Phone: (212) 315-8700
Toll-Free: (800) 586-4872
http://www.lungusa.org/
National
Heart, Lung and Blood Institute (NHLBI)
6701 Rockledge Dr.
P.O. Box 30105
Bethesda, MD 20824-0105
Phone: (301) 592-8573
http://www.nhlbi.nih.gov/
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Help for Patients and Caregivers : Cystic
Fibrosis
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What is Cystic Fibrosis?
Cystic
fibrosis (CF) — a life-threatening disorder that causes severe
lung damage and nutritional deficiencies. CF is an inherited
(genetic) condition affecting the cells that produce mucus, sweat,
saliva and digestive juices. Normally, these secretions are thin
and slippery, but in CF, a defective gene causes the secretions to
become thick and sticky. Instead of acting as a lubricant, the
secretions plug up tubes, ducts and passageways, especially in the
pancreas and lungs. Respiratory failure is the most dangerous
consequence of CF. Each year approximately 3,200 white babies are
born in the United States with CF. The disease is much less common
among black and Asian-American children. Most babies born with CF
are diagnosed by age 3, although mild forms of the disease may not
be detected until the third, fourth or fifth decade of life. In
all, about 30,000 American adults and children are living with the
disorder. Although there's still no cure, the emerging field of
gene therapy may someday help correct lung problems in people with
CF.
Common Symptoms?
The symptoms of cystic fibrosis usually appear within the first
year of life, but may not appear until late childhood or
adolescence. The specific signs and symptoms of CF can vary,
depending on the severity of the disease and with age. For example,
one child with CF may have respiratory problems but not digestive
problems, while another child may have both.
In some
newborns the first sign may be a blockage of the intestines
(meconium ileus). This occurs when meconium — tarry,
greenish-black stools normally passed by an infant in the first day
or two after birth — becomes so thick it can't move through
the intestines. Other signs in newborns may include a failure to
grow, bulky and greasy stools (steatorrhea), and frequent
respiratory infections.
The signs and
symptoms of CF in children and young adults may include:
- Salty taste to the
skin. People with CF tend to have two to five times the normal
amount of salt (sodium chloride) in their sweat. This may be
one of the first signs parents notice because they taste the
salt when they kiss their child.
- Blockage in the
bowel.
- Foul-smelling,
greasy stools.
- Delayed growth.
- Thick sputum. It's
easy for parents to overlook this symptom because infants and
young children tend to swallow their sputum rather than cough
it up.
- Coughing or
wheezing.
- Frequent chest and
sinus infections with recurring pneumonia or bronchitis.
- Growths (polyps) in
the nasal passages.
- Cirrhosis of the
liver due to inflammation or obstruction of the bile ducts.
- Displacement of one
part of the intestine into another part of the intestine
(intussusception) in children older than age 4.
- Protrusion of part
of the rectum through the anus (rectal prolapse). This is
often caused by stools that are difficult to pass or by
frequent coughing.
- Enlargement or rounding
(clubbing) of the fingertips and toes. Although clubbing
eventually occurs in most people with CF, it also occurs in
some people born with heart disease and other types of lung
problems.
What
Causes Cystic Fibrosis?
It is most common in Caucasian-American children, occurring in
about one in every 2,000 births. It is less common among
African-American children, (about one in 17,000 births), and even
more rare among Asian Americans (one in 100,000 births).
The mode of
inheritance is autosomal, which means that it does not involve the
x or y chromosomes, which determine sex. It is also recessive,
which means that the disease is inherited from both parents. About
five percent of Caucasian Americans (one in 28) are believed to
carry the gene. Carriers do not have symptoms of the disease, and
often do not even realize that they are one of more than 10 million
people who carry cystic fibrosis. The number of cystic fibrosis
carriers is likely to increase in the future.
This chart can
help you determine the genetic probability of having a child with
cystic fibrosis
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Parents
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Chance of Unaffected
Child
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Chance of Child
Carrier
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Chance of Child with
CF
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Unaffected + Carrier
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50%
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50%
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No Chance
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Two Carriers
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25%
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50%
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25%
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Unaffected + CF Patient
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No Chance
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100%
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No Chance
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Carrier + CF Patient
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No Chance
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50%
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50%
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Medications
for Cystic Fibrosis
Many treatments exist for the symptoms and complications of CF. The
main goal is to prevent infections, reduce the amount and thickness
of secretions in the lungs, improve airflow, and maintain adequate
calories and nutrition.To accomplish these objectives, treatments
for CF may include:
- Antibiotics. Newer antibiotics
may more effectively fight the bacteria that cause lung
infections in people with CF. Among these are aerosolized
antibiotics that send medication directly into airways. One of
the major drawbacks of long-term use of antibiotics is the
development of bacteria that are resistant to drug therapy.
- Mucus-thinning
drugs. When your white blood cells attack bacteria in your
airways, DNA in the cells is released, making the mucus in
your airways even thicker. The aerosolized drug dornase alfa (Pulmozyme)
is an enzyme that fragments DNA, making mucus thinner and
easier to cough up. Side effects of Pulmozyme may include
airway irritation and sore throat.
- Bronchodilators. Use of
medications such as albuterol (Proventil, Ventolin) may help
keep open the bronchial tubes by clearing thick secretions.
- Bronchial airway
drainage. People with CF need a way to physically
remove thick mucus from their lungs. This is often done by
manually clapping on the front and back of the chest — a
procedure that's best performed with the person's head over
the edge of the bed so that gravity helps clear the
secretions. In some cases an electric chest clapper, known as
a mechanical percussor, is used. An inflatable vest that
vibrates at high frequency can also help people with CF cough
up secretions. Both adults and children with CF need to have
bronchial airway drainage at least twice a day for 20 to 30
minutes. Older children and adults can learn to do this
themselves, especially if they use mechanical aids such as vests
and percussors. Young children need the aid of parents,
grandparents or older siblings.
- Exercise. Children with CF
should be active. They can swim, ride bikes, run, play sports
and games. Most children with CF can do any exercise they
want.
Exercise can:
- Loosen mucus in the lungs so it can be coughed up easier;
- Cause coughing, which helps clear the lungs;
- Strengthen breathing muscles and the heart.
- Oral enzymes and
better nutrition. CF can cause you to become malnourished
because the pancreatic enzymes needed for digestion don't
reach your small intestine, preventing food from being
absorbed. As a result, you may need many more calories than
you otherwise would. Supplemental high-calorie nutrition,
special vitamins and enteric-coated oral pancreatic enzymes
can help you maintain or even gain weight.
Surgical
Treatments
Lung
transplantation. Your doctor may suggest lung transplantation
if you have severe breathing problems, life-threatening pulmonary
complications or increasing resistance to antibiotics used to treat
lung infections. Whether you're a good candidate for the procedure
depends on a number of factors, including your overall health,
certain lifestyle factors and the availability of donor organs.
Because both lungs are affected by CF, both need to replaced. If
your chest isn't large enough to hold two adult donor lungs, your
surgeon is likely to use two lower lobes contributed by two living
donors. However it's performed, lung transplantation is a major
operation and may lead to serious complications, especially
post-surgical infections. The five-year survival rate has increased
in the last 10 years, however.
CF
Caregiver Well-Being
If you have a
child with CF, one of the best things you can do is to learn as
much as possible about the disease. Diet, medication and early
recognition of infection are important.Also important is performing
daily chest percussion to drain mucus from your child's lungs. Your
doctor or respiratory therapist can show you the best way to
perform this lifesaving procedure. In addition, the following steps
can help aid your child's health:
- Keep your child's
immunizations up-to-date. This includes
your child's pneumococcal and influenza vaccines. CF doesn't
affect the immune system, but children with CF are more likely
to develop complications when they become sick.
- Encourage your
child to lead as normal and active a life as possible. Exercise is
extremely important for people of all ages who have CF.
Regular exercise helps loosen mucus in your airways and strengthens
your heart and lungs. And for many people with CF,
participating in sports can improve confidence and
self-esteem.
- Make sure your
child eats a healthy diet. Be sure to
discuss your child's dietary needs with your doctor or a
nutritionist.
Use nutrition
supplements. Provide the fat-soluble vitamin
supplements and pancreatic enzymes your child needs to stay as
healthy as possible.
- Emphasize liquids. Encourage your
child to drink plenty of liquids to help loosen the mucus.
This is especially important in the summer when children are
active and tend to lose a lot of fluids.
- Eliminate smoke. Don't smoke in
your home or car, and don't allow other people to smoke around
your child. Secondhand smoke is harmful for everyone, but
especially for people with CF.
- Encourage hand
washing. Teach everyone in your family to wash
their hands thoroughly before eating, after using the
bathroom, when coming home from work or school, and after
being around a person who is sick. Hand washing is the best
way to protect against infection.
Additional Information
To stay
healthy, those with cystic fibrosis need regular visits and
examinations at a Cystic
Fibrosis Foundation-accredited care center. These centers
provide specialized care for those with cystic fibrosis. Usually
patients are seen every six to eight weeks by the specialized
cystic fibrosis team. This team consists of a doctor, nurse,
respiratory therapist, dietitian, physical therapist, social worker
and in some cases a psychologist. Knowing the change or increase in
symptoms is helpful. It is important for patients with cystic
fibrosis to exercise, eat healthy high calorie diets, and take
their medications and treatments as directed even though the
treatments take up a great deal of time.
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Help for Patients and
Caregivers : Diabetes
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What is
type 2 diabetes?
Diabetes is a disease in which blood glucose levels are above normal.
People with diabetes have problems converting food to energy. After
a meal, food is broken down into a sugar called glucose, which is
carried by the blood to cells throughout the body. Cells use the
hormone insulin, made in the pancreas, to help them process blood
glucose into energy.
People develop
type 2 diabetes because the cells in the muscles, liver, and fat do
not use insulin properly. Eventually, the pancreas cannot make
enough insulin for the body’s needs. As a result, the amount
of glucose in the blood increases while the cells are starved of
energy. Over the years, high blood glucose damages nerves and blood
vessels, leading to complications such as heart disease, stroke,
blindness, kidney disease, nerve problems, gum infections, and amputation.
How can
type 2 diabetes be prevented?
Although people with diabetes can prevent or delay complications by
keeping blood glucose levels close to normal, preventing or
delaying the development of type 2 diabetes in the first place is even
better. The results of a major federally funded study, the Diabetes
Prevention Program (DPP), show how to do so. This study of 3,234
people at high risk for diabetes showed that moderate diet and
exercise resulting in a 5- to 7-percent weight loss can delay and
possibly prevent type 2 diabetes.
Study
participants were overweight and had higher than normal levels of
blood glucose, a condition called pre-diabetes (impaired glucose
tolerance). Both pre-diabetes and obesity are strong risk factors
for type 2 diabetes.
Am I at
Risk for Type 2 Diabetes?
Because of the high risk among some minority groups, about half of
the DPP participants were African American, American Indian, Asian
American, Pacific Islander, or Hispanic American/Latino. The DPP tested
two approaches to preventing diabetes: a healthy eating and
exercise program (lifestyle changes), and the diabetes drug
metformin. People in the lifestyle modification group exercised
about 30 minutes a day 5 days a week (usually by walking) and lowered
their intake of fat and calories. Those who took the diabetes drug
metformin received standard information on exercise and diet. A
third group received only standard information on exercise and
diet.
The results
showed that people in the lifestyle modification group reduced
their risk of getting type 2 diabetes by 58 percent. Average weight
loss in the first year of the study was 15 pounds. Lifestyle
modification was even more effective in those 60 and older. They
reduced their risk by 71 percent. People receiving metformin
reduced their risk by 31 percent.
What
are the signs and symptoms of type 2 diabetes?
Many people have no signs or symptoms. Symptoms can also be so mild
that you might not even notice them. Nearly six million people in
the United States have type 2 diabetes and do not know it.
Here is what to look for:
- increased thirst
- increased hunger
- fatigue
- increased
urination, especially at night
- weight loss
- blurred vision
- sores that do not
heal
Types
of Diabetes
The three main kinds of diabetes are type 1, type 2, and
gestational diabetes.
Type 1
Diabetes
Type 1 diabetes, formerly called juvenile diabetes or
insulindependent diabetes, is usually first diagnosed in children,
teenagers, or young adults. In this form of diabetes, the beta cells
of the pancreas no longer make insulin because the body’s
immune system has attacked and destroyed them. Treatment for type 1
diabetes includes taking insulin shots or using an insulin pump,
making wise food choices, exercising regularly, taking aspirin
daily (for some), and controlling blood pressure and cholesterol.
Type 2
Diabetes
Type 2 diabetes, formerly called adult-onset or noninsulindependent
diabetes, is the most common form of diabetes. People can develop
type 2 diabetes at any age, even during childhood. This form of
diabetes usually begins with insulin resistance, a condition in
which fat, muscle, and liver cells do not use insulin properly. At
first, the pancreas keeps up with the added demand by producing
more insulin. In time, however, it loses the ability to secrete
enough insulin in response to meals. Being overweight and inactive
increases the chances of developing type 2 diabetes. Treatment
includes taking diabetes medicines, making wise food choices,
exercising regularly, taking aspirin daily, and controlling blood
pressure and cholesterol.
Gestational
Diabetes
Some women develop gestational diabetes during the late stages of
pregnancy. Although this form of diabetes usually goes away after
the baby is born, a woman who has had it is more likely to develop
type 2 diabetes later in life. Gestational diabetes is caused by
the hormones of pregnancy or a shortage of insulin.
Am I at
Risk for Type 2 Diabetes?
Sometimes people have symptoms but do not suspect diabetes. They
delay scheduling a checkup because they do not feel sick. Many
people do not find out they have the disease until they have
diabetes complications, such as blurry vision or heart trouble. It
is important to find out early if you have diabetes because
treatment can prevent damage to the body from diabetes.
Should
I be tested for diabetes?
Anyone 45 years old or older should consider getting tested for
diabetes. If you are 45 or older and overweight (see BMI chart on
pages 10 and 11), it is strongly recommended that you get tested.
If you are younger than 45, overweight, and have one or more of the
risk factors on page 5, you should consider testing. Ask your
doctor for a fasting blood glucose test or an oral glucose
tolerance test. Your doctor will tell you if you have normal blood
glucose, pre-diabetes, or diabetes.
What
does it mean to have pre-diabetes?
It means you are at risk for getting type 2 diabetes and heart
disease. The good news is if you have pre-diabetes you can reduce
the risk of getting diabetes and even return to normal blood
glucose levels. With modest weight loss and moderate physical
activity, you can delay or prevent type 2 diabetes. If your blood
glucose is higher than normal but lower than the diabetes range
(what we now call pre-diabetes), have your blood glucose checked in
1 to 2 years.
Doing
My Part: Getting Started
Making big changes in your life is hard, especially if you are
faced with more than one change. You can make it easier by taking
these steps:
- Make a plan to
change behavior.
- Decide exactly what
you will do and when you will do it.
- Plan what you need
to get ready.
- Think about what
might prevent you from reaching your
goals.
- Find family and
friends who will support and encourage you.
- Decide how you will
reward yourself when you do what you
have planned.
Your doctor, a
dietitian, or a counselor can help you make a plan. Here are some
of the areas you may wish to change to reduce your risk of
diabetes.
Reach
and Maintain a Reasonable Body Weight
Your weight affects your health in many ways. Being overweight can
keep your body from making and using insulin properly. It can also
cause high blood pressure. The DPP showed that losing even a few
pounds can help reduce your risk of developing type 2 diabetes
because it helps your body use insulin more effectively. In the
DPP, people who lost between 5 and 7 percent of their body weight
significantly reduced their risk of type 2 diabetes. For example,
if you weigh 200 pounds, losing only 10 pounds could make a
difference.
Body mass index
(BMI) is a measure of body weight relative to height. You can use
BMI to see whether you are underweight, normal weight, overweight,
or obese.
- Find your height in
the left-hand column.
- Move across in the
same row to the number closest to your weight.
- The number at the
top of that column is your BMI. Check the word above your BMI
to see whether you are normal weight, overweight, or obese.
If you are
overweight or obese, choose sensible ways to get in shape:
- Avoid crash diets.
Instead, eat less of the foods you usually have. Limit the
amount of fat you eat.
- Increase your
physical activity. Aim for at least 30 minutes of exercise
most days of the week.
- Set a reasonable
weight-loss goal, such as losing 1 pound a week. Aim for a
long-term goal of losing 5 to 7 percent of your total body
weight.
Make
Wise Food Choices Most of the Time
What you eat has a big impact on your health. By making wise food
choices, you can help control your body weight, blood pressure, and
cholesterol.
- Take a hard look at
the serving sizes of the foods you eat. Reduce serving sizes
of main courses (such as meat), desserts, and foods high in
fat. Increase the amount of fruits and vegetables.
- Limit your fat
intake to about 25 percent of your total calories. For
example, if your food choices add up to about 2,000 calories a
day, try to eat no more than 56 grams of fat. Your doctor or a
dietitian can help you figure out how much fat to have. You
can check food labels for fat content too.
- You may also wish
to reduce the number of calories you have each day. People in
the DPP lifestyle modification group lowered their daily
calorie total by an average of about 450 calories. Your doctor
or dietitian can help you with a meal plan that emphasizes
weight loss.
- Keep a food and
exercise log. Write down what you eat, how much you
exercise—anything that helps keep you on track.
- When you meet your
goal, reward yourself with a nonfood item or activity, like
watching a movie.
Be
Physically Active Every Day
Regular exercise tackles several risk factors at once. It helps you
lose weight, keeps your cholesterol and blood pressure under
control, and helps your body use insulin. People in the DPP who
were physically active for 30 minutes a day 5 days a week reduced
their risk of type 2 diabetes. Many chose brisk walking for
exercise.
If you are not
very active, you should start slowly, talking with your doctor
first about what kinds of exercise would be safe for you. Make a
plan to increase your activity level toward the goal of being
active at least 30 minutes a day most days of the week. Choose
activities you enjoy. Here are some ways to work extra activity
into your daily routine:
- Take the stairs
rather than an elevator or escalator.
- Park at the far end
of the lot and walk.
- Get off the bus a few
stops early and walk the rest of the way.
- Walk or bicycle
instead of drive whenever you can.
Take
Your Prescribed Medications
Some people need medication to help control their blood pressure or
cholesterol levels. If you do, take your medicines as directed. Ask
your doctor whether there are any medicines you can take to prevent
type 2 diabetes.
Hope
Through Research
We now know that many people can prevent type 2 diabetes through
weight loss, regular exercise, and lowering their intake of fat and
calories. Researchers are intensively studying the genetic and
environmental factors that underlie the susceptibility to obesity,
pre-diabetes, and diabetes. As they learn more about the molecular
events that lead to diabetes, they will develop ways to prevent and
cure the different stages of this disease. People with diabetes and
those at risk for it now have easier access to clinical trials that
test promising new approaches to treatment and prevention. For
information about current studies, see http://ClinicalTrials.gov.
Diabetes
- Staying healthy from head to toe
If you have diabetes, controlling your sugar is always the first
priority. A healthy diet, regular exercise and good medical care
can help. When your blood sugar is under control you’re also
at lower risk for complications from diabetes. High blood sugar
levels can damage your nerves and blood vessels. When levels are
too high it can cause damage and disease in your eyes, teeth and
feet. That’s why these parts of your body need special care,
according to the American Diabetes Association.
Eyes. To keep your eyes
healthy, get an eye exam every year. You should also go to the
doctor if:
- Your vision gets
blurry.
- You see double.
- Your eyes hurt.
- You see spots.
Teeth
and gums. Have your teeth cleaned and checked every 6 months. Brush
your teeth, front and back, twice daily with a soft brush. Floss
once a day. See your dentist if you notice any problems with your
gums or teeth.
Feet. Wash
and dry your feet every day. Use lotion to keep the skin from
drying out.
Check every day for sores, blisters, calluses or swelling.
Don’t try to treat calluses or corns at home. See your
doctor. Cut toenails straight across. Look for sharp
edges—they can cut your Check shoes inside and out for sharp
objects before you put them on. Pebbles, nails or even a torn shoe
lining could cause problems.
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Help for Patients and
Caregivers : Hepatitis C
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What is Hepatitis C?
HCV (Hepatitis
C Virus) is an inflammation of the liver causing soreness and
swelling. It is the most common chronic blood borne infection in
the United States. The hepatitis C virus usually is transmitted
through contact with infected blood, most commonly by sharing
needles during intravenous drug use, or getting a blood transfusion
before 1992. Hepatitis C also may be spread through unprotected
sexual intercourse, but this is uncommon. Most people don't feel
sick when they are first infected with hepatitis C. Instead, the
virus stays in their liver and causes chronic liver inflammation.
- HCV is one of the
most common causes of chronic liver disease in the United
States
- If the inflammation
is not reversed, it becomes chronic (ongoing, long term) and can
cause chronic liver disease, which can be serious or even
fatal.
- At least 75% of
people infected with hepatitis C develop chronic hepatitis C.
- If the disease
progresses to the point at which the liver begins to fail (end
stage liver disease), the only treatment is liver
transplantation.
- About 4 million
people in the United States have antibodies to HCV, meaning
they have been infected with the virus at some point; as many
as half of them do not know they have the infection.
Hepatitis Life cycle
provided by Rockefeller University
VIEW MOVIE
Common Symptoms?
Symptoms of hepatitis B or C include headache, nausea, vomiting,
abdominal pain, jaundice (the skin turns yellow), weakness and
fatigue. Bowel movements may be gray in color. The urine may be
dark and look like tea. Sometimes, though, hepatitis is a mild
illness. If you have a mild case of hepatitis, you may not even
realize that you have it. It may not cause symptoms or may only
cause symptoms similar to the stomach flu. You might think you have
the flu, and not know you have hepatitis.
- Chronic
hepatitis C can lead to Cirrhosis
of the liver in many people, a condition traditionally associated
with alcoholism. Symptoms of cirrhosis include the following:
- Fluid retention
causing swelling of the belly (ascites), legs, or whole body
- Persistent jaundice
- Fatigue
- Disturbances in
sleeping
- Itchy skin
- Loss of appetite,
weight loss, wasting
- Vomiting with blood
in the vomit
- Mental disturbances
such as confusion, lethargy, extreme sleepiness, or
hallucinations (hepatic encephalopathy)
What
Causes Hepatitis C?
Hepatitis C is mainly transmitted by contact with blood or blood
products. Many times, the cause of hepatitis C is never found.
- Sharing of
contaminated needles among intravenous (IV) drug users is the
most common mode of transmission. Using a needle to inject
drugs, even just once many years ago, is a risk factor for
hepatitis C.
- Many people
contracted hepatitis C through blood transfusions. Since 1992,
however, screening tests to check for hepatitis C in donated
blood have decreased the chance of getting the virus.
- Extremely rare
transmission modes include from mother to child during birth,
sexual intercourse (particularly if sexually active with more
than 1 partner), and accidental needle sticks from a needle
used by someone infected with HCV. Other possible modes
include manicures, haircuts, razors, toothbrush, and tattoos,
but these are unlikely.
- Received blood,
blood products, or solid organs from a donor who has hepatitis
C
- Have been on
long-term kidney dialysis
- Have had frequent
workplace contact with blood (for instance, as a healthcare
worker)
Treatment
for Hepatitis C
Combination therapy with Interferon and Ribavirin is the treatment
of choice resulting in sustained response rates of 40%-80%. (up to
50% for patients infected with the most common genotype found in
the U.S. [genotype 1] and up to 80% for patients infected with
genotypes 2 or 3). Interferon monotherapy is generally reserved for
patients in whom Ribavirin is contraindicated. Ribavirin, when used
alone, does not work. Combination therapy using interferon and
ribavirin is now FDA approved for the use in children aged 3-17
years.
What
are the side effects of interferon therapy?
Most persons
have flu-like symptoms (fever, chills, headache, muscle and joint
aches, fast heart rate) early in treatment, but these lessen with
continued treatment. Later side effects may include tiredness, hair
loss, low blood count, trouble with thinking, moodiness, and
depression. Severe side effects are rare (seen in less than 2 out
of 100 persons). These include thyroid disease, depression with
suicidal thoughts, seizures, acute heart or kidney failure, eye and
lung problems, hearing loss, and blood infection. Although rare,
deaths have occurred due to liver failure or blood infection,
mostly in persons with cirrhosis. An important side effect of
interferon is worsening of liver disease with treatment, which can
be severe and even fatal. Interferon dosage must be reduced in up
to 40 out of 100 persons because of severity of side effects, and
treatment must be stopped in up to 15 out of 100 persons. Pregnant
women should not be treated with interferon.
What
are the side effects of combination (ribavirin + interferon)
treatment?
In addition to
the side effects due to interferon described above, ribavirin can
cause serious anemia (low red blood cell count) and can be a
serious problem for persons with conditions that cause anemia, such
as kidney failure. In these persons, combination therapy should be
avoided or attempts should be made to correct the anemia. Anemia
caused by ribavirin can be life-threatening for persons with
certain types of heart or blood vessel disease. Ribavirin causes
birth defects and pregnancy should be avoided during treatment.
Patients and their healthcare providers should carefully review the
product manufacturer information prior to treatment.
Surgical Treatment
- For end-stage liver
disease, the only treatment that will cure the problem is
liver transplantation.
Hepatitis
C Well-Being
Follow all
instructions that your health care provider gives you. A healthy
lifestyle is more important than ever.
- Eat a varied, healthy
diet, take it easy, and get plenty of rest.
- Drink plenty of
fluids to prevent dehydration.
- Do not drink
alcohol of any kind, including beer, wine, and hard liquor.
- Avoid medicines and
substances that can cause harm to the liver such as acetaminophen
(Advil, Aleve, Ibuprofen, Tylenol) and other preparations that
contain acetaminophen.
- Avoid prolonged,
vigorous exercise until symptoms start to improve.
The better you
take care of yourself, the more likely you will be one of the many
individuals who do well for many years.
Additional Information
|
American Liver
Foundation
http://www.liverfoundation.org
75 Maiden Lane, Suite 603
New York, NY 10038
800-465-4837 (GO-LIVER)
or 239-1035
|
Hepatitis Foundation
International (HFI)
504 Blick Drive
Silver Spring, MD 20904-2901
Phone: 1-800-891-0707
or (301) 622-4200
Email: hfi@comcast.net
Internet: www.hepfi.org
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Help for Patients and
Caregivers : Multiple Sclerosis
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Overview
Multiple sclerosis (MS) is a chronic, potentially debilitating
disease that affects your brain and spinal cord (central nervous
system). The illness is probably an autoimmune disease, which means
your immune system responds as if part of your body is a foreign
substance.In MS, your body directs antibodies and white blood cells
against proteins in the myelin sheath surrounding nerves in your
brain and spinal cord. This causes inflammation and injury to the
sheath and ultimately to your nerves. The result may be multiple
areas of scarring (sclerosis). The damage slows or blocks muscle
coordination, visual sensation and other nerve signals.The disease
varies in severity, ranging from a mild illness to one that results
in permanent disability. Treatments can modify the course of the
disease and relieve symptoms.An estimated 400,000 Americans have
MS. It generally first occurs in people between the ages of 20 and
50. The disease is twice as common in women as in men.
How is Multiple
Sclerosis Diagnosed?
MS is not easy to diagnose. There is no single conclusive test for
MS. Other conditions may need to be ruled out. A GP should always
refer a patient to a neurologist to make or confirm the diagnosis.
The neurologist will not usually diagnose MS until there have been
at least two occurrences of symptoms involving different areas of
the central nervous system, at least a month apart and each lasting
for at least 24 hours. This means that there is always a delay
between the appearance of the first symptom and a diagnosis of MS.
A clinical diagnosis, made by a doctor after seeing you for various
MS-type symptoms over a period of time, needs to be backed up by
tests. It may be necessary to have several different tests to
identify MS. The following are the most commonly The following are
the most commonly used tests for MS.
Neurological
examination
This tests for abnormalities in nerve pathways involved in movement
or sensation. The neurologist looks for changes in eye movements,
co-ordination of legs or hands, balance, sensation, speech or
reflexes, as well as any signs of weakness.
Evoked
potentials
Evoked potentials test the time it takes for the brain to receive
and interpret messages. This is a non-invasive and painless test.
Small electrodes are placed on the head to monitor brain waves
responding to what you see or hear. In a healthy person, responses
are virtually instantaneous. If myelin damage has occurred,
messages may take longer to get through.
MRI
scan
The MRI (Magnetic Resonance Imaging) scanner is used in most areas
of the country to diagnose MS. Linked to a computer, it takes
detailed pictures of the brain and spinal cord. It is very accurate
and can pinpoint the exact location and size of plaques. Over 90
per cent of people with MS have plaques that show up on MRI scans,
but some people’s scans show no myelin damage.
Lumbar
puncture
This test has been used to diagnose MS for many years. A needle is
inserted into the lower back, under local anaesthetic, and a small
sample of cerebrospinal fluid (which flows around the brain and
spinal cord) is taken from the spinal cord. This fluid is tested
for abnormalities in protein patterns.
Other
tests
Conditions that mimic MS can be ruled out by using MRI or other
tests. These include CAT (Computer Axial Tomography) scans, which
give a crosssectional image of the brain; tests to reveal certain
antibodies in the blood; and inner ear tests to check balance.
What
Causes MS?
Many factors are involved in MS, but no single cause has been
identified.
Environment
An environmental agent such as a virus or bacterial infection may
be involved. Some scientists argue that a virus disturbs the immune
system or indirectly sets off a process whereby the immune system
attacks itself. No single virus has been identified as being
responsible for MS, but some researchers think that a common childhood
virus may act as a trigger. Environmental factors seem to be
influential in the first 15 years of life. Many people with MS have
had viral illnesses such as measles, chickenpox, flu, herpes or
glandular fever as children or teenagers.
Genetic
factors
Some people with MS seem to have particular genes which give them a
‘genetic predisposition’ to MS; in other words, they
make it more likely that they will develop the condition. These
genes are also common in the general population, however. There is
no single gene linked to MS.
Family
links
MS is not hereditary (ie passed directly from parent to child), but
it can occur in more than one member of a family. However, in the
UK the chance of a child having MS when a parent is affected is
very small; it is estimated to be three in 100, which is much lower
than that for developing cancer or heart problems. The risk of
being affected by MS for the UK population in general is one in
800.
Climate
and geography
Countries with temperate climates have a higher incidence of MS
cases, and the condition is more common in areas in northern
latitudes such as Scotland. No one knows why this is the case. Some
studies suggest that people who migrate to areas with temperate
climates after the age of about 15 retain the likelihood of taking
on MS corresponding to their country of origin, rather than taking
on the increased likelihood associated with temperate climates.
Are
there different types of MS?
There are four main types of MS, and a great deal of variation
within each.
MS shows up differently in each person. Some people are only mildly
affected throughout their lives. A few people deteriorate rapidly
from the beginning and may die early. Most people with MS
experience something in between these two extremes.
Benign
MS
This type starts with a small number of mild attacks followed by
complete recovery. It does not worsen over time and there is no
permanent disability. The first symptoms usually affect sensation
or sight. People are only classified as having benign MS when they
have little sign of disability 10 to 15 years after the first onset
of symptoms. However, disability may occasionally develop after
many years in which the disease has been inactive. Around 20 per
cent of people with MS have the benign form.
Relapsing-remitting
MS
For most people MS starts as the relapsing-remitting type. This
means they have relapses (a flare-up of symptoms), followed by
remissions (periods of recovery). Relapses (also known as attacks
or exacerbations) tend to be unpredictable and their causes are
unclear. They can last for hours, days, weeks or months, and vary
from mild to severe. During a relapse new symptoms may occur,
previous symptoms may return. At their worst, acute relapses may
need hospital treatment. Remissions can last any length of time
– even years. No one knows exactly what makes MS go into
remission. Even during remission there may still be plaques visible
on MRI scans. In the early stages of relapsingremitting MS,
symptoms usually disappear during remissions. However, after
several attacks there may be some residual damage to myelin,
resulting in the person being slightly more affected than before
the relapse. Around 25 per cent of people with MS have the
relapsing-remitting form.
Secondary
progressive MS
Many people who start out with relapsing-remitting MS later develop
a form known as secondary progressive. This means that disability
does not go away after a relapse and progressively worsens between
attacks, or that the cycle of attack followed by remission is replaced
by a steady progression of disability. Around 40 per cent of people
with MS develop the secondary progressive form, usually about 15 to
20 years after the initial onset of MS.
Primary
progressive MS
Some people with MS never have distinct relapses and remissions.
From the start they experience steadily worsening symptoms and
progressive disability. This may level off at any time or may
continue to get worse. Around 15 per cent of people with MS have
the primary progressive form of the disease, which is also known as
chronic progressive.
Symptoms
of MS?
MS varies from person to person. No one experiences every symptom.
MS can cause a
wide variety of symptoms. Many people only experience a few
symptoms and no one has all of them. People can have different symptoms
at different times, and although some are very common, there is no
typical set that applies to everyone. Symptoms vary in severity and
duration. They can range from mild and short-lived to severe and
longer-lasting. Some symptoms are obvious to other people. Others
(such as pain or fatigue) are hidden or ‘silent’, and
may be harder for people unfamiliar with MS to understand.
Certain
triggers can seem to make symptoms worse. The most common triggers
tend to be overdoing things, exercise which raises core body
temperature, fever, heat and humidity. Symptoms may start with
double or blurred vision, pain at the back of the eye or nerve pain
in the face. Some people experience ringing in the ears or hearing
problems, tingling (‘pins and needles’) or numbness in
the legs, feet, arms or hands. Others experience giddiness and loss
of balance, especially in the dark. Some people may find it hard to
concentrate, become forgetful, or experience anxiety, depression or
mood swings.
Other symptoms
may include fatigue (especially in hot weather), pain, weakness or
difficulty in walking. Some people experience problems with speech
or bladder or bowel control. Sexual function or sensation can be
affected, and a person with MS may need more stimulation to become
or stay aroused. These problems can come and go, like any other MS
symptom. Symptoms are not necessarily unique to MS, and can be
associated with other conditions. Effective treatments are
available for most MS symptoms, and in some cases can reduce
relapses. They should be discussed with your doctors or an MS
nurse.
Help
and support
You may feel upset at being told that you have MS. It may be hard
to believe that the good health you had before has been taken away
from you. You may feel a sense of loss or bereavement, which may
take some time to understand. You may experience shock or
bewilderment and feel angry and want to deny the diagnosis,
carrying on as though nothing has happened. All these reactions are
normal, but some people will experience them more acutely than
others. See our booklet Making the most of life with MS for more
information on coping with these reactions. Talking through your
emotions and questions with someone else can be helpful. The
freephone MS Helpline, telephone counselling lines and local
contacts are there to support you. Details are included on the back
page.
Treatment
If your attacks are mild or infrequent, your doctor may advise a
wait-and-see approach, with counseling and observation. However, if
your diagnosis is a relapsing form of the disease, the form that
affects the great majority of people with MS, your doctor may
recommend treatment with disease-modifying medications as soon as
possible.These medications include:· Beta interferons. Interferon
beta-1b (Betaseron) and interferon beta-1a (Avonex, Rebif) are
genetically engineered copies of proteins that occur naturally in
your body. They help fight viral infection and regulate your immune
system. If you use Betaseron, you inject yourself under your skin
(subcutaneously) every other day. If you use Rebif, you inject
yourself subcutaneously three times a week. Avonex is self-injected
into your muscle (intramuscularly) once a week. These medications
reduce flares of MS. It's uncertain which of their many actions
lead to a reduction in disease activity and what their long-term
benefits are. Beta interferons should never be used in combination
with one another. Only one of these medications should be used at a
time. The Food and Drug Administration (FDA) has approved beta
interferons only for people with relapsing forms of MS who can
still walk. Beta interferons don't reverse damage and haven't been
proved to prevent permanent disability.
Some people
develop antibodies to beta interferons, which may make them less
effective. Other people can't tolerate the side effects, which may
include symptoms similar to those of the flu (influenza).Mayo
Clinic neurologists generally recommend beta interferons for people
who have more than one attack of MS a year and for those who don't
recover well from flare-ups. The treatment may also be used for
people who have a significant buildup of new lesions as seen on an
MRI scan, even when there may not be major new symptoms of disease
activity.
· Glatiramer (Copaxone).
This medication is an alternative to beta interferons if you have
relapsing remitting MS. Glatiramer shouldn't be used at the same
time as beta interferons. Glatiramer is as effective as beta
interferons in curbing MS attacks. Doctors believe that glatiramer
works by blocking your immune system's attack on myelin. You must
inject glatiramer subcutaneously once daily. Side effects may
include flushing and shortness of breath after injection.
Medications to
relieve symptoms in progressive MS may include:
· Corticosteroids. Doctors
most often prescribe oral or intravenous corticosteroids to reduce
inflammation in nerve tissue and shorten the duration of flare-ups.
Prolonged use of these medications, however, may cause side effects
such as osteoporosis and high blood pressure (hypertension).
· Muscle relaxants.
Tizanidine (Zanaflex) and baclofen (Lioresal) are oral treatments
for muscle spasticity. If you have MS, you may experience muscle
stiffening or spasms, particularly in your legs, which can be
painful and uncontrollable. Liore | |
