Are there exercises I can do to strengthen my breathing muscles (breathing exercises for ALS)?
Just as with other muscles in the body affected by ALS, exercise does not make the breathing muscles stronger. But there are many things that can be done to support the respiratory muscles when they become weak. The diaphragm is the main muscle of breathing. When the diaphragm contracts, the lungs expand and fill with air. Muscles are not needed to exhale the air – the lungs exhale by “elastic recoil,” like a rubber band that is stretched and then released. We need muscles to exhale forcefully, for example with coughing. The intercostal muscles (muscles between the ribs) and the abdominal muscles assist in exhaling forcefully when we cough.
Symptoms of a weak diaphragm often occur during sleep or when lying flat. We all breathe less deeply and less frequently when we sleep. If the diaphragm is weak, a person will take in less air during sleep, which then causes low oxygen levels and elevated carbon dioxide levels. This can result in poor quality sleep with daytime headaches, fogginess, and sleepiness. Breathing during sleep can be assisted with non-invasive ventilation, also called BiPAP or Trilogy, which are the names of machines that help with breathing. A mask is worn over the nose and the machine gently pushes air into the lungs, giving bigger breaths, which improves carbon dioxide and oxygen levels.
Another support machine is called a cough assist or inexsufflator. It helps with the muscles needed for coughing and can be used if a person with ALS develops difficulty coughing up mucous when he or she has a cold or bronchitis. Since getting a respiratory infection can be tough on a person with ALS, we recommend yearly flu shots as well as one time vaccine with Pneumovax (a vaccine that helps with prevention of pneumonia). We also recommend avoiding close contact with friends or family members who have a cold.
Is there a connection between ALS and dental fillings?
It is not necessary or advisable to have fillings removed in the setting of ALS. There is no evidence to indicate that ALS is caused or influenced by the mercury contained in mercury amalgam fillings. We have had hundreds of patients pursue this painful and costly course of action and we have not once seen a benefit to the patient. The progression of ALS is not influenced by this procedure.
Is there a connection between Lyme disease and ALS?
ALS is not caused by infection with Borrelia burgdorferi, the tick born spirochete bacterium responsible for Lyme disease. Lyme is actually quite easy to diagnose by a simple blood test and the CDC has well laid out guidelines for the diagnosis of Lyme disease. Symptoms of neurologic Lyme disease include muscle weakness that can mimic ALS, but also almost always include severe pain and sensory symptoms. For Lyme to cause neurologic issues it must be present in the nervous system, which means that it can be seen either by evidence on MRI scan or in the cerebrospinal fluid from results of a spinal tap. If infection with the Lyme agent cannot be confirmed by blood or CSF studies as detailed by the CDC, it is not advisable to undergo prolonged treatment with an oral or intravenous antibiotic regimen for Lyme disease. This can cause considerable side effects including the risk for infectious diarrhea as well as gallstones requiring gall bladder removal.
What kind of genetic testing should I have for ALS?
About 10% of ALS is caused by one of a group of genetic mutations. Known as Familial ALS (FALS), most FALS patients have a family history of ALS, Parkinson’s disease or Parkinsonism, young onset or atypical dementia or atypical psychiatric disease. Since the discovery of the C9ORF72 gene in 2011 it has become clear that a small percentage of ALS patients without a family history are also positive for this gene. Currently, knowing an individual patient’s genetic status does not influence any aspect of their clinical care but of course this information may affect related individuals including children, parents, siblings, and others who will be faced with a decision of whether or not to seek personal genetic testing. Recent ALS clinical trials using molecular techniques that may be able to silence mutant ALS genes may influence the decision to be genetically tested since this knowledge may allow participation in these trials. The Penn ALS Center is one of only a few in the United States that have on site genetic counseling available for our patients and families.