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Caring
for a loved one with ALS is no easy task. Not only does
it require physically caring for someone you love at home,
but it also means facing your own concerns about the diagnosis
and eventual outcome of the disease. You may be concerned
that there is no cure for your loved one's disease. You
may also worry about how quickly the disease will progress.
Physical and emotional care can be time-consuming and exhausting.
Most caregivers of people with ALS have concerns about their
loved ones' illness and future health prospects. Practical
concerns, such as worries about financial issues and time
management, are also common. The goal of this chapter is
to address some of these concerns.
Learning more about ALS is an essential first step in your
caregiver role. This can be important for caregivers who
are often caring for partners. It may be overwhelming to
think of your loved one being helpless and dependent upon
you. Understanding the disease and knowing what to expect
can help you feel more in control.
It can be difficult to learn about a disease when you do
not know where to start. This section provides general information
about ALS, including what caregivers can do to help their
loved ones.
ALS, also known as Lou Gehrig's disease, refers to a type
of motor neuron disease. Motor neurons control muscles. Patients
with the disease lose their ability to move as the neurons
die.
As motor neurons die, the muscles they control begin to twitch
and weaken (atrophy), eventually losing their ability to function.
Patients with ALS lose strength all over their bodies. Eventually
they may not be able to move or to breathe without assistance.
ALS does not affect the ability to think or remember. It will
not affect the personality of your loved one. Although the
patient may become frustrated and saddened by the disease,
he/she will remain the person you have always known. He/she
will be able to move the eye muscles and retain control of
bladder and bowel functions. The senses of taste, touch, smell,
sight and hearing also remain intact and can continue to bring
great pleasure to your loved one.
(Adapted from a National Institute of Health
ALS Fact Sheet, August 2000)
According to the National Institutes of Health, about 20,000
people in the United States have ALS. An estimated 5,000 people
per year are diagnosed in the United States. It affects all
races and age groups, although it is more prevalent in men
and in people aged 40 to 60 years old.
Your family members and friends may wonder if they can "catch"
ALS from the patient. The disease is not contagious. It cannot
be spread from person to person through the air, by contact
or via blood transfusions. In about 5 to 10 percent of all
cases, ALS is inherited. This means that it is passed through
the family from parent to child. This is called familial ALS.
In the other 90 to 95 percent of ALS cases, the cause is not
known and no risk factors have been identified. This is known
as sporadic ALS.
The following symptoms are common in people with ALS. However,
it is important to know that these symptoms do not mean
that the patient has ALS. Only a doctor can make a diagnosis.
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Muscle
weakness, wasting, cramping, and twitching |
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Slurred,
slow speech |
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Difficulty
swallowing |
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Slow
and uncoordinated movements |
(Adapted
from Forshew, D. and Hulihan, S. Living with ALS: What's
It All About?. ALS Association, 1997)
Doctors
use various means to make a diagnosis:
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Evaluation
of the patient's medical history. |
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Physical
examination including a complete neurological exam. |
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Electromyogram
(EMG) and nerve conduction velocity (NCV) check the
health of the nerves and muscles. |
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Muscle
biopsy - Where tissue is obtained through a needle or
surgical procedure and directly examined. |
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Other
tests such as magnetic resonance imaging (MRI) may be
done to rule out conditions with similar symptoms. |
(Adapted
from information provided by the Muscular Dystrophy Association,
2001 and from a National Institutes of Health ALS Fact Sheet,
August 2000)br>
Hearing that your loved one has ALS may be frightening. It is difficult
to know how quickly the disease will progress. You may worry about
whether he/she will suffer. This disease will eventually make your
loved one dependent upon others for care. You may want to take care
of him/her but wonder if you can. There is so much for you to think
about, yet you might be reluctant to talk to your loved one about
your worries. It is important that you get support when you feel like
this. Here is more information
is on obtaining support, taking care of yourself
and using relaxation techniques.
Although there is currently no cure for ALS, there are treatments
that can slow the progression of the disease and improve
its symptoms. Treatment options, some of which depend on
the symptoms, include:
Riluzole
(Rilutek) is the first drug treatment approved by the Food
and Drug Administration (FDA) for the treatment of ALS.
This drug has been shown to reduce the damage ALS does to
motor neurons. However, Riluzole does not reverse the damage
already done. In clinical trials with ALS patients, Riluzole
prolonged survival by several months. Patients on the drug
also survived longer without needing ventilation support.
(Adapted from a National Institute of Health
ALS Fact Sheet, August 2000)
Non-drug therapies can be very important for ALS patients. They
can help improve patients' quality of life and provide relief for
caregivers as well. Learning about the therapies, including when
and where to obtain them, is a valuable way for you to help your
loved one cope with ALS
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Physical
and occupational therapy – exercises and special
equipment can help with symptoms and make it easier
for your loved one to move around. |
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Nutrition
– a nutritionist can advise you on planning many
small nourishing meals that can be served throughout
the day. |
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Speech
therapist – a speech therapist can help patients
who are having difficulty speaking. |
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Relaxation
techniques – learning how to relax can help patients
cope better with the illness. |
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Massage
– can decrease muscle stiffness and relieve the
discomfort of cramps, and can also be quite pleasurable
and relaxing for your loved one. |
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Distraction
– engaging activities (such as hobbies, video games
and movies) that change the patient's focus can help
relieve symptoms. |
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Psychotherapy
– speaking with a mental health professional about
the stress and frustration of ALS, and learning techniques
for coping with the disease, can be beneficial for both
you and the patient. |
Here is more information on relaxation techniques.
As ALS progresses, your loved one will develop new symptoms. The
good news is that there are treatments for these symptoms. You can
help by understanding each symptom and related treatment options.
You can also help by knowing when to contact your loved one's health
care team. Here is more information on how and when to effectively communicate with
the health care team.
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Muscle
cramps and spasms - Stretching exercises, drinking plenty
of liquids, and, in some cases, medication, can help. |
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Swelling
of hands and feet – Elevating your loved one's
arms or legs may help with the swelling. If the problem
persists, talk to the doctor. |
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Excess
saliva and drooling – Medications can help dry
out the patient's mouth. |
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Clogged
throat and/or nose – This may be caused by the
patient breathing through his/her mouth more than usual.
Using a room humidifier can sometimes alleviate the
symptom. If it persists, talk to the health care team
about medications. |
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Jaw
quivering and/or teeth chattering – This symptom
can occur when the patient is chilled, yawning, or speaking.
If it becomes a problem, discuss appropriate treatment
with the health care practitioner. |
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Brief
periods of difficulty breathing – This symptom
can scare both you and your loved one as he/she may
gasp for breath or have feelings of suffocation. If
your doctor tells you that this is a temporary symptom
that may come and go, you might work together and try
to find ways to help. For example, trying to breathe
deeply, and getting fresh air from a window or fan can
be beneficial. You can help your loved one avoid strong
smells, such as smoke, cold air, alcohol, and spicy
foods, if they bring on the symptom. You can also ask
the doctor about medications that can help. |
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Acid
indigestion and heartburn – People with ALS and
acid indigestion may have gastro-esophageal reflux disease
(GERD). This can also cause coughing, bad breath, scratchy
throat, hoarse voice, shortness of breath, nausea, and
sleeplessness. You can help your loved one avoid things
that cause indigestion such as caffeine, spicy foods,
and overeating. Your loved one's doctor can suggest
medication for GERD. |
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Speech
problems – ALS causes speech problems that can
make it difficult for your loved one to communicate.
Encourage him/her to speak slowly, pronounce carefully,
and to get help from a speech therapist when needed. |
Here is more information on the symptoms listed below. The sections on
emotional needs and learning how to relax describe techniques that
can help patients relax and cope with emotions.
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Sleep
disturbances – You can help by encouraging the
use of relaxation techniques to relieve stress. If your
loved one continues to have difficulty with sleep, discuss
this with the health care team. |
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Depression
and anxiety – These are understandable symptoms
for ALS patients. You can ask his/her doctor about professional
help and medication. |
Here is more information on the symptoms listed below.
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Constipation |
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Fatigue |
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Shortness
of breath |
(Adapted
from Gelinas, D. Living with ALS: Managing Your Symptoms and
Treatment. ALS Association, 1997)
Clinical trials are research studies that evaluate new treatments.
Those who take part in clinical trials are some of the first to receive
and benefit from new approaches to ALS therapy. These treatments have
usually been tested with good results. Patients in trials are watched
closely by physicians and researchers. For more information on how
clinical trials and ALS research might benefit your loved one, contact
the National Institute of Health and/or the Muscular Dystrophy Association.
Here is more information on these organizations
and other helpful ALS resources.
Complementary and alternative therapies are treatments that
do not use known ALS drugs. Rather, therapy comprises techniques
not common in the medical community. Some complementary
therapies (such as relaxation, visualization, and acupuncture)
are so common that they are considered mainstream, and used
along with traditional medical therapies. It is important
to research and understand the risks and benefits of these
therapies, and to discuss their use with the doctor.
The National Center for Complementary and Alternative Medicine (NCCAM)
Clearinghouse is a good source of information for these approaches.
Here is more information
on this organization and other helpful ALS resources.
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Learn
as much as possible by reading and asking experts about
ALS. |
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Find
medical practitioners who understand the disease. |
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Ensure
regular visits to the patient's doctor. |
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Ask
questions of doctors and discuss your concerns. |
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Find
ways to avoid and manage stress in the household. |
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Administer
medications as prescribed. |
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Offer
to massage sore or cramping muscles if the physician
approves. |
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Encourage
your loved one to eat even when his/her appetite is
poor. |
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Help
the patient keep his/her mouth clean; brush teeth at
least twice a day. |
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Encourage
the use of techniques to relieve stress and promote
symptom management. |
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Distract
the patient with enjoyable activities to help decrease
the effects of the disease symptoms. |
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Help
rate and record fatigue in a fatigue journal. |
Here is more information
is some more information on relaxation techniques.
National
Institute of Neurological Disorders and Stroke
NIH Neurological Institute
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424
http://www.ninds.nih.gov/health_and_medical/pubs/als.htm
This is the primary National Institute of Health organization
for research on ALS. It provides excellent, up-to-date,
and easy to understand information on the disease.
ALS Association of America (ALSA)
27001 Agoura Road, Suite 150
Calabasas Hills, CA 91301-5104
(818) 880-9007
(800) 782-4747 Patient hotline
(818) 340-2060 Fax
http://www.alsa.org
This is the only national not-for-profit voluntary
health organization dedicated solely to the fight against
ALS. It provides a library of free manuals on living with
ALS and videos that you can borrow for a small fee to learn
more about the disease. The material provided includes information
on the management of disease-related symptoms. Some support
group and caregiver information is also provided. The Website
has a forum for sharing stories about the disease.
The Muscular Dystrophy Association
3300 East Sunrise Drive
Tucson, Arizona 85718-3208
(520) 529-2000
(800) 572-1717
http://als.mdausa.org
This organization provides a comprehensive Website
with information about the disease, research information
(including clinical trials), an "Ask The Expert" service,
online videoconferences, referrals to support groups and
access to publications, including an excellent online caregivers'
guide and an ALS newsletter. Information is also provided
in Spanish.
U.S. National Library of Medicine
8600 Rockville Pike
Bethesda, MD 20894
(888) FIND-NLM
(888) 346-3656
(301) 594-5983 (local and international calls)
http://clinicaltrials.gov/ct/gui/action/FindCondition?ui=
D000
690&recruiting=true
This service, which is provided by the National Institute
of Health, posts information on ALS clinical trials.
National Center for Complementary and Alternative
Medicine (NCCAM) Clearinghouse
P.O. Box 8218
Silver Spring, MD 20907-8218
Toll Free: (888) 644-6226
TTY/TDY: (888) 644-6226
FAX: (301) 495-4957
http://nccam.nih.gov/
This is the National Institute of Health organization dedicated
to exploring complementary and alternative healing practices.
MEDLINEplus Health Information
http://www.nlm.nih.gov/medlineplus/amyotrophiclateralsclerosis.html
MEDLINE is a service of the National Library of Medicine that
provides excellent links to Websites, journals, and abstracts for
a variety of topics related to ALS.
ALS Survival Guide
http://www.alssurvivalguide.com/
This is a patient-run ALS Website. It provides a unique
glimpse into the disease through the site founder's journal
entries and the sharing of other ALS stories. The site also
offers other information including an "Ask the Expert" service
and some caregiver information.
Hechos Sobre la Esclerosis Lateral Amiotrofica (ALS)
(Muscular Dystrophy Association)
http://www.mdausa.org/espanol/esp-fa-als.html
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