NEW ORLEANS – In 2016, Cille Norman, 61, of Newton, Mississippi, experienced unexplained weakness in her hands that continued to worsen in other areas of her body. After consulting a number of physicians and undergoing a battery of tests, Cille was diagnosed with amyotrophic lateral sclerosis (ALS).
With no ALS Center near her home, Cille researched facilities throughout the South and determined the Ochsner ALS Center, approximately 3 hours from her home, would be the best choice for her specialty care.
“People with ALS often say that it really stands for ‘a loss’ every day,” Cille said. “Practically every day you wake up, you have lost the ability to do something. It may be a tiny thing or a large thing, but there is a loss.”
ALS is a debilitating type of motor neuron disease that is characterized by progressive degeneration of nerve cells in the spinal cord and brain affecting more than 30,000 people in the United States. Symptoms include muscle stiffness, twitching and – ultimately – profound weakness. This results in increasing difficulty moving, speaking, swallowing and breathing – often leading to respiratory failure.
During a visit to the Ochsner ALS Center, Cille was introduced to the Ochsner Voice Banking Program, a way to record and preserve her voice after she loses the ability to speak.
The Ochsner Voice Banking Program is a volunteer initiative developed in 2016 and run by students from the University of Queensland – Ochsner Clinical School. The medical students help people with ALS by recording their voices in a specialized audiology booth. Once recorded, the voices are sent to the software manufacturer, ModelTalker, which synthesizes each voice for future use on any computer device through typed commands.
“I can’t think of anything more important than giving a voice to someone who has lost theirs,” said Elizabeth Verter, fourth year medical student, University of Queensland – Ochsner Medical School. “But, if you can give them their own voice, that’s incredible.”
Patient participants record over 1,600 phrases pre-selected from literature that account for many of the words people speak in a day over the course of approximately 10 studio session. Additionally, in their last recording session, they are able to preserve phrases that are personalized to them and their family, allowing them to keep the words they like to say, in the manner in which they like to say it. Cille was able to recorded 316 custom phrases, such as “I love you” and “sugar-pie honeybunch”, so that she can always have the ability to communicate with her family.
“This project has become so important to me because I have a granddaughter who, when she heard about it, it was like a little light bulb went off in her head,” said Cille. “She said ’Mimi, that means your voice is going to live on and on and on.’ That’s why I did this.”
Now in its second year, the Ochsner ALS Center specializes in treating patients suffering from ALS and related disorders.
It allows patients to be seen by all of the specialists they need in one visit, helping to alleviate the difficulties of traveling to multiple appointments throughout the month. The specialized team consists of a neurologist, pulmonary critical care physician, physical medicine and rehabilitation physician, nurse practitioner, licensed clinical social worker, speech language pathologist, physical therapist, occupational therapist, dietician and respiratory therapist.
The Amyotrophic Lateral Sclerosis (ALS) Association has awarded the Ochsner ALS Center the status of Recognized Treatment Center in the Association’s nation-wide network of Certified Treatment Centers of ExcellenceSM. It is the only site in Louisiana to earn this distinction. For more information, visit the Ochsner ALS Center or call 504-842-0113.
Ochsner Health System is Louisiana’s largest non-profit, academic, healthcare system. Driven by a mission to Serve, Heal, Lead, Educate and Innovate, coordinated clinical and hospital patient care is provided across the region by Ochsner's 29 owned, managed and affiliated hospitals and more than 60 health centers. Ochsner is the only Louisiana hospital recognized by U.S. News & World Report as a “Best Hospital” across three specialty categories caring for patients from all 50 states and more than 80 countries worldwide each year. Ochsner employs more than 17,000 employees and over 1,000 physicians in over 90 medical specialties and subspecialties, and conducts more than 600 clinical research studies. Ochsner Health System is proud to be a tobacco-free environment. For more information, please visit ochsner.org and follow us on Twitter and Facebook.