Question: My husband has been diagnosed with ALS. We need help, please.
Dr. Hibberd's Answer
The American Academy of Neurology published "new guidelines to help identify the best treatments to help ALS patients live longer and easier" in the October 13, 2009 issue of Neurology. You may visit their website at www.aan.com.
ALS (Amyotrophic Lateral Sclerosis) or Lou Gehrig’s disease is a motor neuron nerve cell disorder. It attacks the nerve cells that control voluntary muscles. While most people with ALS die within three to five years, about 10 percent survive 10 or more years.
ALS strikes without warning, making its victims unable to walk or stand, causes them to lose their arm and hand movements, and makes them wheel-chair bound. In addition, they often have problems breathing and swallowing.
The cause of ALS is unknown and there is no cure. Present treatment focuses on making the disability that results from progressive paralysis more tolerable. This is a difficult disorder to predict, since some patients appear to have accelerated disease while the progression is slower for others.
The guidelines suggest offering the drug riluzole (a sodium channel blocker) to try to slow the rate of disease progression. It seems to have a "modest effect" of prolonging survival three to five months, perhaps longer. Unfortunately, some patients experience excessive fatigue or liver problems and have to discontinue this drug. There are no other effective medications approved by the FDA.
Experts also call for encouraging a multidisciplinary approach with an ALS clinic to increase access to treatments, as well as early aggressive nutritional management with tube feeding and non-invasive assisted breathing devices. Botox may be used to decrease excessive salivation and drooling, and screening and early treatment for behavioral and thinking problems is emphasized.
My advice is to enjoy today and deal with tomorrow as it comes. Avoid planning too far in the future, and try to enjoy each other's company for what it is today.
If you are not fortunate to experience remission, remain as active as possible and never lose hope. Although genetic interventional treatments and cell cloning/transplant treatments have shown promise, we don’t have any useful applications yet.
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