Amyotrophic Lateral Sclerosis (cont.)
How is ALS treated?
No cure has yet been found for ALS. However, the Food and
Drug Administration (FDA) has approved the first drug treatment for the
disease - riluzole (Rilutek). Riluzole is believed to reduce damage to motor
neurons by decreasing the release of glutamate. Clinical trials with ALS
patients showed that riluzole prolongs survival by several months, mainly in
those with difficulty swallowing. The drug also extends the time before a
patient needs ventilation support. Riluzole does not reverse the damage already
done to motor neurons, and patients taking the drug must be monitored for liver
damage and other possible side effects. However, this first disease-specific
therapy offers hope that the progression of
ALS may one day be slowed by new medications or combinations of drugs.
Other treatments for ALS are designed to relieve symptoms and improve the
quality of life for patients. This supportive care is best provided by
multidisciplinary teams of health care professionals such as physicians;
pharmacists; physical, occupational, and speech therapists; nutritionists;
social workers; and home care and hospice nurses. Working with patients and
caregivers, these teams can design an individualized plan of medical and
physical therapy and provide special equipment aimed at keeping patients as
mobile and comfortable as possible.
Physicians can prescribe medications to help reduce
fatigue, ease muscle cramps, control spasticity, and reduce excess saliva and
phlegm. Drugs also are available to help patients with pain, depression, sleep
disturbances, and constipation. Pharmacists can give advice on the proper use of medications and
monitor a patient's prescriptions to avoid risks of drug interactions.
Physical therapy and special equipment can enhance
patients' independence and safety throughout the course of ALS. Gentle,
low-impact aerobic exercise such as walking, swimming, and stationary bicycling
can strengthen unaffected muscles, improve cardiovascular health, and help patients fight fatigue and depression.
Range of motion and stretching exercises can help prevent painful spasticity and
shortening (contracture) of muscles. Physical therapists can recommend exercises
that provide these benefits without overworking muscles. Occupational therapists
can suggest devices such as ramps, braces, walkers, and wheelchairs that help
patients conserve energy and remain mobile.
ALS patients who have difficulty speaking may benefit from working with a
speech therapist. These health professionals can teach patients adaptive
strategies such as techniques to help them speak louder and more clearly. As ALS
progresses, speech therapists can help patients develop ways for responding to
yes-or-no questions with their eyes or by other nonverbal means and can
recommend aids such as speech synthesizers and computer-based communication
systems. These methods and devices help patients communicate when they can no
longer speak or produce vocal sounds.
Patients and caregivers can learn from speech therapists
and nutritionists how to plan and prepare numerous small meals throughout the
day that provide enough calories, fiber, and fluid and how to avoid foods that are difficult to
swallow. Patients may begin using suction devices to remove excess fluids or
saliva and prevent choking. When patients can no longer get enough nourishment
from eating, doctors may advise inserting a feeding tube into the stomach. The use of a
feeding tube also reduces the risk of choking and pneumonia that can result from
inhaling liquids into the lungs. The tube is not painful and does
not prevent patients from eating food orally if they wish.
When the muscles that assist in breathing weaken, use of nocturnal
ventilatory assistance (intermittent positive pressure ventilation [IPPV] or bilevel positive airway pressure [BIPAP]) may be used to aid breathing during
sleep. Such devices artificially inflate the patient's lungs from various
external sources that are applied directly to the face or body. When muscles are
no longer able to maintain oxygen and carbon dioxide levels, these devices may
be used full-time.
Patients may eventually consider forms of mechanical ventilation
(respirators) in which a machine inflates and deflates the lungs. To be
effective, this may require a tube that passes from the nose or mouth to the
windpipe (trachea) and for long-term use, an operation such as a tracheostomy,
in which a plastic breathing tube is inserted directly in the patient's windpipe
through an opening in the neck. Patients and their families should consider
several factors when deciding whether and when to use one of these options.
Ventilation devices differ in their effect on the patient's quality of life and
in cost. Although ventilation support can ease problems with breathing and
prolong survival, it does not affect the progression of ALS. Patients need to be
fully informed about these considerations and the long-term effects of life
without movement before they make decisions about ventilation support.
Social workers and home care and hospice nurses help patients, families, and
caregivers with the medical, emotional, and financial challenges of coping with
ALS, particularly during the final stages of the disease. Social workers provide
support such as assistance in obtaining financial aid, arranging durable power
of attorney, preparing a living will, and
finding support groups for patients and caregivers. Respiratory therapists can help caregivers with tasks such as
operating and maintaining respirators, and home care nurses are available not
only to provide medical care but also to teach caregivers about giving tube
feedings and moving patients to avoid painful skin problems and contractures.
Home hospice nurses work in consultation with physicians to ensure proper
medication, pain control, and other care affecting the quality of life of
patients who wish to remain at home. The home hospice team can also counsel
patients and caregivers about end-of-life issues.
Next: What research is being done on ALS? »
- riluzole oral tablets, Rilutek - Consumer information about the medication RILUZOLE ORAL TABLETS (Rilutek), includes side effects, drug interactions, recommended dosages, and storage information. Read more about the prescription drug RILUZOLE ORAL TABLETS.
- Electromyogram (EMG) - EMG (electromyogram) can detect abnormal muscle electrical activity in conditions such as neuropathy, carpal tunnel syndrome, pinched nerves, herniated discs, peripheral nerve damage, ALS, and more.
- Muscle Spasms - Read about muscle spasms, their causes, diagnosis, treatment and prevention. Symptoms and signs include acute pain at the site of the muscle contractions (twitches or fasciculations).
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