After being stunned with ALS diagnosis; woman pledges to make a difference

A Mississippi woman diagnosed with ALS is recording her voice to allow her voice to be heard after she can no longer talk. She is also recording her voice for others.

New technology is helping terminal patients and their family members preserve a priceless gift. 

A Mississippi woman is turning to a Metairie hospital to save her ability to communicate with her loved ones in the uncertain days and months she faces ahead. She is not only traveling to save her voice, but to give one to future patients who will face the same challenge.

For Cille Norman, it started out as cramps in her hands while at work as a high school counselor. Following test upon test, Norman got life-changing news.

"It was a Friday afternoon. Young doctor. Looked at her. She had tears in her eyes and I just said, 'It's ALS isn't it,'" remembers Cille Norman, 62, of Newton, Mississippi. 

ALS, or Lou Gehrig's disease as it is often called, takes away the nerves' ability to tell the muscles what do. Patients lose all mobility, even the ability to talk and they normally die within three to five years. But Cille is determined to make a difference. She is one of the first people to join the Ochsner Voice Banking program.

Cille has already recorded her favorite phrases. The computer 'speaks' back in her voice, 'I love you' and 'Good morning sunshine.'

She'll also record 1,600 phrases provided by the software ModelTalker, so when she's done, she'll get a file with the ability to synthesize all phonetic phrases into words she wants to say. It will be her own voice with her personal Mississippi southern drawl. She is also donating her voice to Ochsner.

"It's really hard. Our voice is a big part of our identity. It's devastating when that goes away," said Dr. Dan Larriviere, a neurologist and Director of the ALS Clinic at Ochsner. 

Medical students are volunteering to do the voice recordings free for patients and to raise donations for the software synthesizing part of the program.

"A voice is something so special and so unique to all of us, and it means a lot to family members to know that they can hear their loved ones," said Elizabeth Verter, a 4th year medical student who wants to go into neurology. She is also the co-coordinator of the ALS Voice Banking Program at Ochsner and has been working with Cille to record her voice. 

"Because there's so many people who don't have the opportunity to get their voice recorded before they lose it, and so anybody that wants to can have my voice," she said.

But it's her broken-hearted grand daughter, Lily, who is most thankful for this program.

"Mimi, this means even after you die, a part of you's going to go on and on for ever and ever," Norman remembers her grand daughter telling her. 

Cille and her high school sweetheart, who is her husband of 43 years, bravely and emotionally accept that there is no cure. She's now looking forward to what she believes is her calling.

"People used to call me 'The Baby Whisperer' because I could get babies to stop crying and I think God needs me in Heaven in the nursery," said Norman. "If I could help somebody out that way, it would have made any of this worth it."  

We then had the computer say in Cille's voice, 'Meg Farris Eyewitness News Medical Watch.' 

The Voice Banking Program is having a fundraiser August 24 at Ochsner. At 7pm they will have a showing of the Steve Gleason documentary about his journey with ALS. Admission is $15.

 For more on the program or to donate to help patients have their voices recorded Click here.

© 2017 WWL-TV


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