Treatment
Because there's no reversing the course of amyotrophic lateral sclerosis, treatments mainly involve efforts to make you more comfortable and independent and to slow the progression of symptoms. Treatments may involve many professionals, including doctors, therapists, dietitians, social workers and hospice nurses, and may include:
• Medications. The drug riluzole (Rilutek) is the first and only medication approved by the Food and Drug Administration for slowing ALS. The drug appears to slow the disease's progression and prolong life by a few months in some people, perhaps by reducing glutamate levels. Your doctor may also prescribe medications to provide relief from muscle cramps and constipation and to reduce fatigue, excessive salivation and excessive phlegm. Some people with amyotrophic lateral sclerosis also benefit from medications for pain or depression.
• Physical and occupational therapy. A physical therapist can recommend low-impact exercises to maintain your muscle strength and range of motion as long as possible, helping you preserve a sense of independence. An occupational therapist can help you become accustomed to a brace, walker or wheelchair and may be able to suggest devices such as ramps that make it easier for you to get around.
• Speech therapy. Because ALS affects the muscles you use to speak, communicating clearly becomes an issue as the disease progresses. A speech therapist can help teach techniques to make your speech more clearly understood. Later in the disease, a speech therapist can recommend devices such as speech synthesizers and computers that may help you communicate.
• Nutritional support. A dietitian can advise you on foods that are nutritious but easy to swallow. As the disease progresses and you have greater difficulty swallowing, you may consider a feeding tube inserted into your stomach to receive nutrition and avoid choking.
• Breathing assistance. ALS progressively weakens the muscles you need for breathing, making it more difficult to breathe. At first, you may benefit from a device that makes it easier for you to breathe during the night. Some devices, such as masks or nose inserts, fit over your face and are easy to use or remove. The mask or nose insert is attached to a portable machine that provides air pressure to inflate your lungs. You can also use these devices during the day.
As breathing muscles weaken further, you may need to decide whether or not to use the full-time help of a respirator that inflates and deflates your lungs. A respiratory therapist or lung specialist (pulmonologist) can help you choose devices that will work for you.
New treatments
Researchers are investigating many other medications for their usefulness in treating amyotrophic lateral sclerosis. Examples include the antibiotic minocycline (Minocin), the breast cancer drug tamoxifen, the antioxidant coenzyme Q10 and a nerve-nourishing drug called insulin-like growth factor (IGF-I). Increasingly, researchers are studying drug "cocktails" — which are combinations of medications. Stem cell therapy is another avenue of research. Early studies show that stem cells may have the ability to repair or replace the motor neurons damaged by ALS, but clinical use or clinical trials with stem cell therapy is still a long way off. Only time will tell if these new treatments will be useful.
It's important to work closely with a doctor who specializes in amyotrophic lateral sclerosis, who will be informed as new discoveries and treatments may become available. Some health care centers offer ALS clinics where people with ALS can work with physical therapists, occupational therapists, speech therapists, nurses, social workers and other people with ALS — all in the same place.
