John Bach

Weakness of the muscles that control or influence breathing or swallowing is by far the most serious problem in ALS and requires decisions about whether and how to prolong life.

"If there's anything I can do to help, just let me know."

Most caregivers have heard that open-ended offer at one time or another from family and friends, but few have actually taken them up on it. Why not, when the job of caregiving is so difficult and time-consuming?

The last chance this year to ease restrictions on people receiving Medicare home health services lies in getting an amendment passed in the starkly divided U.S. Senate.

The David Jayne Medicare Homebound Modernization Act of 2002, named for the Atlanta man with ALS who has led the fight to pass it, would remove restrictions on people receiving home health nursing services who meet certain criteria, including those with ALS. Currently, Medicare home health care recipients can lose their services if they leave their homes for more than brief absences, except for approved reasons.

Although ALS has robbed Margit Robien of typical speech, she finds many ways to communicate: scratching notes on a pad of paper, writing with chalk on a slate board and connecting wordlessly with her ever-present smile.

While writing is the most effective way for her to express her needs today, she and her husband, Jerry, know that, as her fingers weaken from the disease, they'll need other ways to communicate.

Many caregivers of people with ALS feel caught in a desperate contradiction. Although they're kept busy with the physical care of their loved ones, they realize there's very little they actually can do against the disease. Slowly and inexorably, despite their best efforts, ALS marches on.

The Speech Research Laboratory at the Alfred I. duPont Hospital for Children in Wilmington, Del., is seeking people with ALS and their clinicians across the country to participate in a study to evaluate a personalized synthetic speech system for users of augmentative communications devices.