Small moments like this can leave a meaningful and lasting memory. The primary goal of hospice care is to improve the quality of life for patients with ALS.
This is accomplished by managing the late-stage symptoms, helping families deal with their concerns and promoting social interactions between the patient and their loved ones. The most notable benefits of hospice care for ALS patients include:. Of course, the benefits for every patient and family differ. To find out how hospice care can help you or your loved one with ALS, talk to an experienced hospice care provider.
Here at Harbor Light Hospice, we help patients in the end stages of ALS and their family and seek to improve the quality of life and comfort level of the patient.
To learn more about how we can help, give us a call today. Now a Traditions Health company. Common symptoms include:. In more advanced stages, ALS causes shortness of breath and difficulty in breathing and swallowing, which is what eventally lead to a person's death.
Based on US population studies, a little more than 5, people in the US are diagnosed with ALS each year — approximately 15 new cases per day. It is estimated that as many as 30, Americans have the disease at any given time.
Most people develop ALS between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. However, rare cases of the disease do occur in persons in their 20s and 30s. Although the cause of ALS is not completely understood, recent research suggests that multiple complex factors contribute to the death of motor neurons.
Research published in suggests that smoking tobacco may heighten a person's risk for ALS. Diagnosing ALS is difficult because there is no single medical test for it. Also, since many neurologic diseases cause similar symptoms, these other conditions must be ruled out first, through clinical examinations and medical tests.
A comprehensive diagnostic workup includes most, if not all, of the following tests and procedures:. Individula doctors will determine which of the above tests to conduct, usually based on the physical exam and the results of previous medical tests the patient has had. Currently there is no known cure or treatment that halts or reverses the progression of ALS.
Other gene mutations indicate there may be defects in protein recycling—a naturally occurring process in which malfunctioning proteins are broken down and used to build new working ones. Still others point to possible defects in the structure and shape of motor neurons, as well as increased susceptibility to environmental toxins. Environmental factors Researchers are studying the impact of environmental factors, such as exposure to toxic or infectious agents, viruses, physical trauma, diet, and behavioral and occupational factors.
For example, exposure to toxins during warfare, or strenuous physical activity, are possible reasons for why some veterans and athletes may be at increased risk of developing ALS. Ongoing research may show that some factors are involved in the development or progression of the disease.
There is no single test that provides a definitive diagnosis of ALS. A neurologic examination at regular intervals can assess whether symptoms such as muscle weakness, muscle wasting, and spasticity are progressively getting worse. There is no treatment to reverse damage to motor neurons or cure ALS. However, treatments can help control symptoms, prevent unnecessary complications, and make living with the disease easier.
Supportive health care is best provided by multidisciplinary teams of professionals such as physicians; pharmacists; physical, occupational, speech, and respiratory therapists; nutritionists; social workers; clinical psychologists; and home care and hospice nurses. These teams can design an individualized treatment plan and provide special equipment aimed at keeping people as mobile, comfortable, and independent as possible.
Drugs also are available to help individuals with pain, depression, sleep disturbances, and constipation. Gentle, low-impact aerobic exercise such as walking, swimming, and stationary bicycling can strengthen unaffected muscles and 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 individuals conserve energy and remain mobile. People with ALS who have difficulty speaking may benefit from working with a speech therapist, who can teach adaptive strategies to speak louder and more clearly. As ALS progresses, speech therapists can help people maintain the ability to communicate.
Devices such as computer-based speech synthesizers use eye-tracking technology and can help people develop ways for responding to yes-or-no questions with their eyes or by other nonverbal means. Some people with ALS may choose to use voice banking while they are still able to speak as a process of storing their own voice for future use in computer-based speech synthesizers. A brain-computer interface BCI is a system that allows individuals with ALS to communicate or control equipment such as a wheelchair using only brain activity.
Nutritionists can teach individuals and caregivers how to plan and prepare small meals throughout the day that provide enough calories, fiber, and fluid and how to avoid foods that are difficult to swallow. People may begin using suction devices to remove excess fluids or saliva and prevent choking. When individuals can no longer eat, doctors may advise inserting a feeding tube, which reduces the risk of choking and pneumonia that can result from inhaling liquids into the lungs.
As the muscles responsible for breathing start to weaken, people may experience shortness of breath during physical activity and difficulty breathing at night or when lying down.
Initially, NIV may only be necessary at night but may eventually be used full time. Because the muscles that control breathing become weak, individuals with ALS may also have trouble generating a strong cough.
There are several techniques to help people increase forceful coughing, including mechanical cough assistive devices. As the disease progresses, individuals may need mechanical ventilation respirators in which a machine inflates and deflates the lungs. Doctors may place a breathing tube through the mouth or may surgically create a hole at the front of the neck and insert a tube leading to the windpipe tracheostomy. Has he lived so long because he got the disease when he was young and had the juvenile-onset type?
Juvenile-onset is diagnosed in the teenage years, and I don't know enough about his course to say. But it's probably something similar to juvenile-onset disorder, which is something that progresses very, very, very slowly. I have patients in my clinic who were diagnosed in their teens and are still alive in their 40s, 50s or 60s.
But not having ever examined him or taken a history, it's a little hard for me to say. How frequent are these cases of very slow-progressing forms of ALS?
I would say probably less than a few percent. How much do you think Stephen Hawking's longevity has been due to the excellent care that he has received versus the biology of his particular form of ALS?
It's probably a little bit of both. I just know him from television, so I don't know what kind of interventions he's had. If he really isn't on a ventilator, then it's his biology—it's the biology of his form of the neurodegenerative disease that determines how long he will live. For trouble swallowing you can elect to have a feeding tube placed, which basically takes malnutrition and dehydration off the table. But mostly it's about the biology of the disease. Hawking obviously has quite the active mind, and previous statements that he has made seem to indicate he has a pretty positive mental outlook, despite his condition.
Is there any evidence that lifestyle and psychological well-being do much to help with patients' outcomes? Or is the disease usually too quick for that to make a difference? I don't believe that adds to longevity. ALS still doesn't have a cure. What have we learned about the disease recently that might help us find one—or at least better treatments?
Beginning in it became clear that like a lot of other neurodegenerative diseases, ALS was determined by the accumulation of abnormal proteins in the brain. Ten percent of ALS is genetic and based on a gene mutation.
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