High rates of ALS on Guam may have been caused by the native people’s predilection for eating bats, according to a new theory.

Two researchers proposed the theory based partly on observations that the bats — a delicacy among native Guamanians — eat poisonous nuts from the indigenous cycad tree.

A diagnosis of ALS carries a lot of unanswered questions: How fast will my disease progress? How will I cope with my loss of function? What adaptive equipment will I need, when will I need it and how will I get it?

Anne Markovich, RN, BSN
Nurse Coordinator, Neuromuscular Disorders Program MDA Clinic, Northwestern University, Chicago
*Reprinted with permission from Chicago Cares, the MDA/ALS Division Newsletter from Chicago

Persons with ALS have many respiratory issues that are a direct result of their illness and the weakening of the muscles used for breathing and coughing.

Pneumonia/Flu

Unlocking the mysteries of Guamanian ALS

After 50 years of research, the cause behind a cluster of ALS among the native people of Guam — the Chamorro — remains a mystery. Some research groups have pointed to a toxin from the cycad nut, a staple in the Chamorro diet, but that theory has been largely dismissed. Others have observed that Guamanian ALS tends to run in families, and have proposed a strictly genetic origin.

The National Sleep Foundation recently confirmed what Mom probably told you a long time ago: The average adult requires at least eight hours of sound sleep a night.

But to caregivers who are up and down all night helping their loved ones with serious conditions like ALS, that may sound like a laughable ideal.

Unfortunately, chronically sleep-deprived people don't laugh all that much. A recent University of Texas study of 51 caregivers of terminally ill family members found a clear correlation between lack of sleep and severe depression.

Last year, a research group based at Johns Hopkins University in Baltimore made headlines by injecting stem cells into rodents paralyzed by an ALS-like disease — and restoring movement.

Those experiments raised hopes that stem cells could be used to replace or repair the muscle-controlling nerve cells (motor neurons) damaged by ALS. But much work needs to be done before this cell therapy can be tested in people, said Jeffrey Rothstein, lead researcher on the experiments and co-director of the MDA/ALS Center at Johns Hopkins.

"So when the day comes to settle down, who's to blame if you're not around? You took the long way home..." -Supertramp, 1979

Fred Siwak not only stops and smells the roses along the way: He looks for ways to capture their beauty in his artwork.

From coast-to-coast... and back again

Siwak, 49, graduated from the University of Connecticut in 1974, then worked as an employment specialist until he moved to San Francisco. After working in a variety of jobs, Siwak became a paralegal for 10 years.

Difficulty handling saliva is a common problem in ALS. To see what can be done about it, we talked with Ashok Verma, an associate professor of neurology at the University of Miami School of Medicine, who sees patients at the Kessenich Family MDA/ALS Center at the University of Miami.