The last year has been the best year of Susan Galloway's life.

"I have been cherished, loved, helped, prayed for, encouraged, given so many gifts of love and peace ... I have never been so overwhelmed with so much love in my life from family, friends and even strangers," the Radnor resident said.

"What more could anyone want?"

No doubt, she would like to move, speak, eat or even cough without the aid of technology.

Galloway can do none of those on her own.

In June 2001 she was diagnosed at age 58 with amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease in which all voluntary muscle activity deteriorates. The latter stages of the incurable condition, also known as Lou Gehrig's disease, cause total paralysis. ALS patients, whose minds rarely are affected by the illness, have a life expectancy of two to five years.

Unable to speak since March, Galloway communicates by e-mail and with a voice synthesizer. This laptop computer device repeats in a mechanized voice the words she types on the keyboard. The machine also responds to eye movement.

"I need to start learning as my hands get weaker," noted Galloway.

Lighting up when an image of her grandchildren appears on her computer screen, her eyes already serve as indispensable tools of expression.

While she cannot deny her disabilities, Galloway nevertheless views herself as disabled and nondisabled.

"On the one hand, just a year ago, I felt like a member of the population, like everyone else," said Galloway, who began using a motorized wheelchair in February. "But I do not exactly feel that way today. Yet, at any moment, there may be a miracle or a cure for ALS.

"On the other hand, I cannot eat, walk or talk or even turn myself over in bed. And yet, I feel my life is as full as anyone else's."

Last year the mother of three and grandmother of five went on a cruise to Turkey and several Greek islands. She took a six-week family vacation to South Carolina this summer.

She will embark on a different kind of cruise as part of "Cruisin' for Susan," an ALS walk team from Wayne Presbyterian Church where her husband, John, is senior pastor. The team will participate in a three-mile fundraising walk through Wayne Nov. 16 as part of the community's ALS Day.

She also is quite capable of inspiring others with her insight, inner strength and faith.

"I depend more on God, I believe, because I need Him all the more," she said. "He is certainly just as available to me."

Galloway, who frequently gives the thumbs-up sign and an OK signal by forming a circle with her thumb and forefinger, also devised her own repertoire of hand gestures and an alphabet of capital letters.

However, she is not the only one who can improvise. When she lost her capacity to kiss, her 3-year-old granddaughter created a special "Grandma Susie" kiss.
Galloway, whose first symptom appeared as a twitching in her right calf muscle in August 2000, left her job as mission advocate at PresbyHomes and Services in Lafayette Hill following her diagnosis.

"My whole orientation has changed from serving others to being served by others," she said.

She has received invaluable help from church members; the ALS Association and Ginny Eisenstaedt, a friend and physical therapist who helps her anticipate her needs as the disease progresses. By the time she loses another muscle function, Galloway noted, her advocates already have the adaptive resources in place.

A nebulizer breaks up congestion; a coughalator mechanically coughs for her; a bi pap machine helps Galloway, whose respiratory capacity is at 45 percent, breathe; a feeding tube surgically attached to her stomach enables her to "eat" meals and take medication; a converted minivan meets her transportation needs; a handicapped-accessible addition to the Galloway home accommodates the equipment she uses daily.

Despite her positive attitude, Galloway is frustrated by her limitations. She gets irritated when people will not try to communicate with her. She longs to perform simple tasks others take for granted.

"I would love to be able to pick up our grandchildren," the Charlotte, N.C., native said. "I would love to be able to talk to them in my own Southern voice."

But the most precious ability Galloway has lost that she misses above all others - the loss that makes her "feel hollow" inside?

Her ability to smile.

©Main Line Life 2002