“While we are waiting for a cure, people need to know that a lot can be done to make life easier and longer for people with ALS,” said lead guidelines author Robert G. Miller, MD, with the Department of Neurology at California Pacific Medical Center in San Francisco and Fellow of the American Academy of Neurology.
ALS is a rapidly progressive and fatal neurologic disease that attacks the nerve cells that control voluntary muscles. Eventually people with ALS are not able to stand or walk, or use their hands and arms, and they have difficulty breathing and swallowing. Most people with ALS die within three to five years from the onset of symptoms. However, about 10 percent survive for 10 or more years.
According to the guidelines, the drug riluzole should be offered to people with ALS to slow the rate at which the disease progresses. Riluzole is the only drug approved by the U.S. Food and Drug Administration to treat ALS and has a modest effect on prolonging survival.
The guidelines also state that life expectancy will likely increase and quality of life may increase for people with ALS who use an assisted-breathing device. Longer life expectancy is also likely for people with ALS who use a feeding tube known as a PEG tube, since nutrition plays a critical role in prolonging survival. The guidelines also recommend doctors consider offering their patients botulinum toxin B to treat sialorrhea, also known as drooling, if oral medications do not help. Moreover, doctors should consider screening their patients for behavioral or thinking problems because studies show many people with ALS have these problems. Such problems might affect some patients’ willingness to accept suggested treatments.
“Important treatments available for people with ALS are often not suggested by doctors and not used by patients,” said Miller. “It’s important that people with ALS know that more treatments are now available to ease the burden of the disease and that they should see neurologists who are aware of these new guidelines and follow them.”
In addition, the guidelines recommend people with ALS enroll early in a specialized multidisciplinary ALS clinic to optimize care. “Attending a multidisciplinary clinic will likely increase survival and access to treatments, and may improve quality of life,” said Miller.
The cause of ALS is not known, and it’s not yet known why ALS strikes some people and not others.
The American Academy of Neurology, an association of more than 21,000 neurologists and neuroscience professionals, is dedicated to promoting the highest quality patient-centered neurologic care through education and research. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as epilepsy, dystonia, migraine, Huntington’s disease and dementia.
For more information about the American Academy of Neurology, visit http://www.aan.com or http://www.thebrainmatters.org.
Rachel L. Seroka | American Academy of Neurology
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21.09.2018 | DOE/Oak Ridge National Laboratory
Narcolepsy, scientists unmask the culprit of an enigmatic disease
20.09.2018 | Universitätsspital Bern
The building blocks of matter in our universe were formed in the first 10 microseconds of its existence, according to the currently accepted scientific picture. After the Big Bang about 13.7 billion years ago, matter consisted mainly of quarks and gluons, two types of elementary particles whose interactions are governed by quantum chromodynamics (QCD), the theory of strong interaction. In the early universe, these particles moved (nearly) freely in a quark-gluon plasma.
This is a joint press release of University Muenster and Heidelberg as well as the GSI Helmholtzzentrum für Schwerionenforschung in Darmstadt.
Then, in a phase transition, they combined and formed hadrons, among them the building blocks of atomic nuclei, protons and neutrons. In the current issue of...
Thin-film solar cells made of crystalline silicon are inexpensive and achieve efficiencies of a good 14 percent. However, they could do even better if their shiny surfaces reflected less light. A team led by Prof. Christiane Becker from the Helmholtz-Zentrum Berlin (HZB) has now patented a sophisticated new solution to this problem.
"It is not enough simply to bring more light into the cell," says Christiane Becker. Such surface structures can even ultimately reduce the efficiency by...
A study in the journal Bulletin of Marine Science describes a new, blood-red species of octocoral found in Panama. The species in the genus Thesea was discovered in the threatened low-light reef environment on Hannibal Bank, 60 kilometers off mainland Pacific Panama, by researchers at the Smithsonian Tropical Research Institute in Panama (STRI) and the Centro de Investigación en Ciencias del Mar y Limnología (CIMAR) at the University of Costa Rica.
Scientists established the new species, Thesea dalioi, by comparing its physical traits, such as branch thickness and the bright red colony color, with the...
Scientists have succeeded in observing the first long-distance transfer of information in a magnetic group of materials known as antiferromagnets.
An international team of researchers has mapped Nemo's genome, providing the research community with an invaluable resource to decode the response of fish to...
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