How did I get ALS?
We do not know what causes ALS. For 95% of people with ALS, the cause has not yet been discovered.
About 5 to 10 percent of ALS is familial — meaning it arises in families in which there is a history of ALS and in this case the condition is called familial ALS (fALS). fALS is caused by a mutation in a gene.
Can I pass ALS down to my children?
Only people with fALS have the potential to pass the condition down to their children. fALS is caused by genetic mutations and can be passed from parent to child.
How can I be sure that the diagnosis is correct?
There is no single diagnostic test for ALS but there are several tests that support the diagnosis. It is important that when ALS is suspected or diagnosed, that the individual undergo a second opinion with an expert in ALS. Sometimes, especially early in the course of the condition, ALS can be suspected but not proven. In this case, the individual will be advised to return to the specialist after a period of time to look for progression.
How can I protect myself from unproven advice and treatments?
One can protect themselves from false information by discussing possible alternative treatments with your physician. The website ALS Untangled posts results of research into alternative treatments to determine if there are any indications that these treatments may be useful for ALS patients.
How much should I exercise?
People with ALS are encouraged to continue their regular exercise program however, high resistance and high repetition activity for any weak muscle group is discouraged as it can result in increased fasciculations and fatigue. A reasonable aerobic exercise program is appropriate to optimize muscle strength and endurance.
Can I travel?
Yes! Travel is possible during much of the course of ALS. Some types of vacations are easier than others. Sometimes preplanning is needed but ALS patients travel all over the world.
Sometimes I start laughing (or crying) and can’t stop. Is this part of ALS?
Yes. ALS patients can experience episodes of uncontrollable crying or laughter that does not go along with how they are feeling.
Does ALS ever cause personality changes or memory loss?
Studies suggest that up to 50% of ALS patients demonstrate mild to moderate cognitive and/or behavioral impairment that departs from longstanding levels of function. Although dementia and cognitive impairment does not present in all cases of ALS, when dementia or cognitive impairment is present, it typically resembles the symptoms of Frontal Temporal Dementia (FTD) syndromes.