Voice For Joanie Helps

 Hundreds To Communicate

By Jan Howard

It was 13 years ago that Shirley Fredlund set out to discover a new, computer generated speech system that would enable a friend to audibly express her emotions.

That search was the impetus for Voice for Joanie, Inc, which was named for the late Joan Margaitis of Morris, who was diagnosed with amyotrophic lateral sclerosis (ALS), a progressive disorder of the nervous system that causes the degeneration of the upper and lower motor neurons. Also known as Lou Gehrig’s disease, the condition results in muscle weakness because of the loss of the vital links between nerves and muscles.

 Imagine what it would be like to be sick and unable to speak or consumed by thoughts but unable to express them. What if you could not let anyone know that you were cold, hungry, or in pain? That is what daily life is like for many victims of ALS and other debilitating conditions.

The disorder eventually results in total paralysis, and patients such as Ms Margaitis are faced with the horrible reality of not being able to communicate. Brain functions remain normal but there is no way to outwardly express any thoughts or emotions, except through simple voluntary movements such as the blink of the eye or nod of the head.

Ms Margaitis’ constant struggle to communicate sparked the creation of Voice for Joanie, which has since been responsible for giving voices to hundreds of ALS sufferers.

Ms Fredlund, who was close friends with Ms Margaitis, knew there had to be another way. She located and received a $1,500 grant and the computer software, which was donated by IBM.

Fourteen years later more than 400 people have been helped to communicate.

“We usually assist about 60 people [at a time],” Ms Fredlund said recently.

The computer system that was developed for Ms Margaitis consisted of a standard personal computer, a printer, special software, a voice synthesizer, and a switch designed specifically for the user.

Today, there are many new, updated communication tools available for those with debilitating diseases to assist the person in communicating with a doctor, nurse, or loved one, to make their needs and desires known.

Computer technology is adapted and modified according to specific needs, and a volunteer is assigned to each client to provide continuous individual support.

If a person can blink, nod, or move a finger, he or she can “speak” by highlighting the words or phrases on the computer screen, and the synthesizer translates them into speech, making it possible for those suffering with ALS to communicate.

Although Ms Margaitis died before the computer technology was made available to the public, her struggle inspired a movement that gives others like her the gift of speech. It has reached countless lives and continues to assist ALS patients.

“Generally our area is Connecticut, but people hear about us and contact us from other states,” Ms Fredlund said, such as New York and Massachusetts. Services are not limited to these states.

Clients are referred to Voice for Joanie by doctors, health agencies, family members, or support groups after all other medical, therapeutic, and rehabilitative services have been explored. A team of volunteers meets with the client and family members to evaluate the need and to determine which communication equipment will help.

The Danbury Area Computer Society (DACS) provides Voice for Joanie with volunteers, technical expertise, and computer equipment.

Additional volunteers are always needed, Ms Fredlund said. “It’s always true,” she noted.

“The programs we use are very specific and are difficult to learn, especially by someone who is ill,” Ms Fredlund said. “If we had somebody who could learn the program and teach it to the people, it would be wonderful.”

She said she also needs additional volunteers to help with computer problems that occur.

More than 30,000 Americans have ALS, according to the ALS Association, a nonprofit organization that supports ALS research and public and patient education about the disease. Around 3,000 to 5,000 new cases of the disease are diagnosed every year.

At the onset of ALS the symptoms may be so slight that they are frequently overlooked. The course of the disease may include twitching and cramping of muscles, especially those in the hands and feet, impairment of the use of the arms and legs, difficulty in projecting the voice in more advanced stages, shortness of breath, and difficulty in breathing and swallowing.

The exact cause of ALS is unknown. Allergic responses, infectious and/or viral agents have been proposed as possible causes of this disorder, but none has been proven. Approximately five to ten percent of all cases of ALS are hereditary.

 For more information about Voice for Joanie or to volunteer, call Shirley Fredlund at 860-350-9034.