Newton ALS patient participates in cutting edge voice banking programBy DEMETRIUS THOMPSON,
Longtime Newton native Cille Norman will be one of a few people with a terminal disease who will be able to preserve an important piece of herself as her health fails while also getting a chance to help others. Last year, Norman was diagnosed with amyotrophic lateral sclerosis (ALS), 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 20,000 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. However, thanks to a new program at Ochsner’s ALS Center in New Orleans, Norman’s family and friends will be able to hear her communicate in her own voice even after she loses the ability to speak.
Born and raised in Newton, Norman lived the classic all-American story, being a cheerleader for the Tigers and marrying her husband, Richard, who was on the Tiger football team. Richard also grew up in the house across the street from where they currently live.
A sudden diagnosis
Norman earned a degree in grief therapy and crisis intervention, and the couple lived in Madison for about 30 years before moving back home to Newton in 2001. Norman, who had always had a love of helping people, worked as the counselor for Newton High School for more than a decade until she began noticing symptoms.
“I was still the counselor at Newton High School and I began to notice that I couldn’t pick up things that were heavy and I couldn’t hold things,” Norman said. “I was dropping things and I was having a lot of muscle spasms.”
At first Norman thought that her condition may have something to do with a previous torn rotator cuff and she visited a neurologist in Jackson. Unable to find the problem, the neurologist sent her and Richard to the Mayo Clinic in Rochester, Minn. It was there that Norman was told by doctors that she had ALS.
“There’s not a test you can take that will tell you have ALS; it’s a disease of exclusion,” Norman said. “They exclude everything they can possibly think of, and then if you still are having the same symptoms and it’s continuing to get worse then they know you have ALS. No two cases follow the same pattern.”
Most ALS patients, after being diagnosed, have a life expectancy of three to five years. Although 2014’s worldwide movement the “Ice Bucket Challenge” brought more awareness to the disease and raised $117 million for ALS research, there is still no cure or medication to reverse the effects.
Because Mississippi does not have an ALS treatment center, Norman had to search outside of the state and found that the Ochsner ALS Center was the closest and had the best credentials in the U.S.
“The first visit, they’re just trying to figure out where you are in the process of everything. The neat thing about the ALS clinic at Ochsner’s is that you go to one room and you sit very comfortably and all the specialists come to you,” Norman said. It can be up to 20 specialists. For four hours, you sit there and you see the neurologists and you see the pulmonary critical care physicians and the nutritionists. You don’t have to travel from office to office and sit and wait, they literally come to your door and it’s one person after the other and you see everybody you need to see in about four hours, which is pretty special, especially if you get tired easily.”
On Norman’s second visit, the staff introduced her to the Ochsner Voice Banking Program, a way to record and preserve her voice after she loses the ability to speak.
Patient participants record more than 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. In their last recording session, they can preserve phrases that are personalized to them and their family, allowing them to keep the words they like to say, in the way they like to say it. Norman was able to record 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.
Norman’s 8-year-old granddaughter accompanied her and Richard for one of the visits to the studio and Norman said she finally grasped just how important the endeavor was.
“When she heard about it, it was like a little light bulb went off in her head,” said Norman. “She said ’Mimi, that means your voice is going to live on and on and on.’ It means a lot to her because even though she understands that this is a terminal disease, she knows there’s a part of me that will still be left behind and that’s important to her. That’s why I did this.”
The Ochsner Voice Banking Program is a volunteer initiative developed in 2016 and run by students from the University of Queensland, Australia — Ochsner Clinical School. 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.
Norman said there are even speaking devices that are controlled through eye movement, meaning that she will only have to look at the words on the screen instead of typing and the device will recognize what sentences she wants to say.
Norman also volunteered to donate her voice to the Voice Banking Program for future patients who have lost the ability to speak. Some ALS patients lose their ability to speak earlier and have to use computerized voices for their devices, like the one used by famed physicist Stephen Hawking, who lost the ability to speak after being diagnosed with ALS in 1963.
“My husband jokes that he can’t imagine anybody wanting to hear my voice all day,” said Norman with a laugh. “But it would mean a lot to a lot of people to have a real voice instead of a computerized voice. I don’t know how many people will end up using it, but it pleases me and gives me purpose. It that’s all that comes out of having ALS is giving a voice to people that didn’t have it then it’s worth it to me. I’m 61, I’ve lived a good life, but if I can give a voice to somebody who is 16 or 17, how awesome it that.”
According to the ALS Association, there are two different types of ALS, sporadic and familial. Sporadic, which is the most common form of the disease in the U.S. and the type Norman has, accounts for 90 to 95 percent of all cases. Familial ALS accounts for 5 to 10 percent of all cases in the U.S. Familial ALS means the disease is inherited. In those families, there is a 50 percent chance each offspring will inherit the gene mutation and may develop the disease.
ALS usually strikes people between the ages of 40 and 70, and approximately 20,000 Americans can have the disease at any given time.
Norman said that ALS moves at different speeds for different patients. She has lost nearly all the control in her hands and arms and can only move her thumbs.
“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.”
A home health nurse comes each weekday to help Norman dress, prepare food and run errands. Norman can still walk and talk well but will most likely one day have to use a wheelchair and will need a special vehicle for transportation.
Norman said she and Richard have already made preparations for her worsening condition, such as buying a hospital bed and installing a walk-in shower, but that they still enjoy life together. She said some people wondered why she wanted to deal with end of life decisions like preparing wills and funeral arrangements, but Norman said that she thinks that it is the most logical approach.
“It’s a natural part of life, everybody dies, some people just know they’re going to die sooner than others and once you take care of the hard stuff,” she said, “then you can live the rest of the time and not have to worry about it anymore and that’s what we did. We just live now and enjoy every minute.”