ALS support group in Bethel helps those with loss of speech 'talk' to each other
Newstimes
Posted: 02/23/2009 06:08:52 PM EST


Like a force of nature, wheelchair-bound 40-year-old Bob Murray, a resident of Bethel Health Care, emanates tremendous strength, though he is completely dependent on others for his physical care.
Amyotrophic lateral sclerosis (ALS) has left him communicating with slow, halting speech or via computer by the painstaking use of his right forefinger, which still remains functional.

Also known as Lou Gehrig's disease, ALS is a degenerative disease affecting the nerve cells in the brain and spinal cord with early symptoms that include increasing muscle weakness, especially of the arms and legs, and in those muscles involved in swallowing, speaking and breathing.

When I first met Bob last fall, he told me that one of his challenges was to "keep ahead of his disease," so he is regularly online searching for and sharing new information.

In sharp contrast to his extreme physical limitations is the immensity of his spirit and continual outreach to help others.

So I wasn't surprised when I was invited to an ALS support group meeting that Bob had initiated, held the fourth Wednesday of every month at Bethel Health Care.

Mary Harrington, the director of Social Services there who facilitates the group, told me that the cold and icy weather has kept many participants at home, but they have a large core group.

Before the meeting got underway, Bob introduced me to Shirley Fredlund who is founder of a Voice for Joanie, an organization that for nearly

two decades has provided "talking technology" free of charge for victims of ALS and other debilitating diseases where loss of speech is imminent.

Though Bob said that he would continue to use his speech and right forefinger as long as he was able, he is learning a computer program that translates eye focus or a blink (keyboard or touch screen may also be used) into the spoken word.

In demonstrating this amazing technology using focus, his computer "voice" said, "Hello, Linda, thank you for coming" with a surprising measure of expression, unlike the robotic computer-speak of the "old" days.

Shirley's husband, Frank Ruiz, added, "with some equipment you can change your 'voice' to male or female -- like 'sassy lassie' or you can sound like a Southerner. Once you find a voice that you want to be yours -- we can do that."

There are so many technologies out there that are touted as great "and it may be so for somebody, but not everybody," said Shirley, who will arrange to let people try different devices and exchange them for something else, if need be.

A woman holding onto a walker came into the room with a halo of silver hair and a face radiating such beauty that it took my breath away.

Martha Nowacki of Sandy Hook was diagnosed a year-and-a-half ago with Bulbar ALS, a form of the disease which first affects speech and swallowing.

Now unable to eat or speak, she has a feeding tube and uses her BlackBerry or writes on a pad of paper to communicate.

"When she gets mad at me, her husband, Don, divulged with a laugh, "she writes real big."

"So you can't eat at all?" Shirley asked Martha once she was settled.

"Not anymore," Don answered for her. "She can't swallow, basically. She still gets a little ice cream down every once in awhile." She's Italian, he said, and loved to cook.

"It must be difficult to smell the cooking aromas," I said, to which she nodded as Don remarked that she has to leave the kitchen because of them.

"Now she wants to teach me how to cook," Don said.

"It's good of you to talk to us about this," Shirley said to the Nowackis. "Bobby, oh my goodness, he's led us in so many ways, given us so many suggestions."

She added that there were basically two ways people deal with serious illness: by denying it and withdrawing or by reaching out to help and share with others.

"We met some people who were in pretty bad shape when we went to a symposium in Boston last fall," Don recalled. "It's amazing how upbeat they are."

What was striking to me was that both Martha and Bob were literally glowing and seemingly more alive than any of us in the room.

What is it about facing serious illness: losing hearing, sight, speech or muscle strength and coordination that seems to heighten those senses and abilities that remain?

How does such profound loss, such a daunting diagnosis, translate into this apparent serenity, clarity and luminescence?

"With me," Bob responded in his e-mail, "it's about just acceptance. Not living in fear of death. My body is only a form of matter. When I die, my soul lives forever. The soul is what you saw glowing. It's made of intuition, subconscious, helping others and sacrificing oneself, losing one's ego."

n To learn more about a Voice for Joanie or its May 16 Pizza Party fundraiser, go to www.voiceforjoanie.org or contact Shirley Fredlund at (860) 350-9034 or voiceforjoanie@juno.com.

n For more information on Bob Murray's ALS support group, contact Mary Harrington at Bethel Health Care at (203) 830-4180 or maryh@bethelhealthcare.com.

n For information on the ALS fund- and awareness-raising with the partnering of the Muscular Dystrophy Association and Major League Baseball, culminating on July 4, the 70th anniversary of Lou Gehrig's famous farewell speech, go to www.als-mda.org.


Linda Napier is a registered nurse and independent consultant living in Southbury who is author of the book "Tender Medicine." You can contact her via email at lindanapier@netzero.com.

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