Jeanine R. Schierbecker of St. Louis has been a physical therapist (PT) at Washington University School of Medicine’s MDA clinic since 1985, 11 years before it was designated an MDA/ALS center.

A team approach

When I made the choice to live on a ventilator in 1997, I had no idea how many times I would have to fight for the private duty nursing (PDN) that makes it feasible for me to safely stay at home with my husband and young son.

Once I became vent-dependent, my doctor prescribed 12 hours a day of nursing care. But TennCare, Tennessee’s Medicaid program, repeatedly refused to provide my PDN, on the grounds that it was not a covered benefit.

Depression doesn't dominate in ALS

Only 15 (19 percent) of 80 people with late-stage ALS recently surveyed met standard criteria for a diagnosis of depression, say investigators at the Eleanor and Lou Gehrig MDA/ALS Research Center at Columbia University in New York.

Long-ago residence on Guam is likely ALS risk factor

In a study that included 140 people with ALS and another 140 without the disease, those with ALS were found to be eight times more likely to have lived on Guam, even for a few months, than were those who didn’t have ALS.

The first real break in solving the mystery of ALS causation came in 1993, when MDA-supported investigators linked one form of familial (genetic) ALS to a gene on chromosome 21 that gives rise to a protein called superoxide dismutase 1 (SOD1), identifying 11 disease-causing mutations in the SOD1 gene in 13 affected families. (Today, some 100 different SOD1 mutations are known to cause ALS in humans.)

We’re not alone on this journey through ALS. My husband, Patrick, had ALS and I cared for him throughout his illness.

As caregivers, we have the potential to burn out both emotionally and physically. My biggest piece of advice is don’t! I wore myself out, and that caused my husband more anguish.

Take care of yourself

It was 1959. Stuart Nichols, 7, settled into the seat next to his father, Owen, taking in the sights, sounds and smells of Comiskey Park, home of the Chicago White Sox.

Little did he know that one day his passion for baseball would be a gift to his son and that ironically, he would develop ALS, the disease named after one of the greatest men in baseball history, Lou Gehrig.

Editor’s Note: Diane Huberty, 57, of Fort Wayne, Ind., is a former neurology head nurse/instructor who has had ALS for 20 years. She writes frequently about tips for living with ALS.

It’s not uncommon in ALS for something unexpectedly and abruptly to aggravate your airway and throw you into a choking fit. I know from personal experience that these choking, gagging, gasping spells are physically exhausting, frustrating and upsetting for both the choker and the caregiver.

The actions to take for choking depend on the type of choking spell you’re having. For example:

In this age of text-messaging and voice mail, it’s easy to forget how important it is to be able to jot down a note, sign your name, or write a grocery list.

Handwriting is indeed one of those “don’t-know-what-you-got-till-it’s-gone” abilities that ALS can diminish by weakening the muscles in the hands and arms.