MDA Profile: Vienna woman with ALS - KFVS12 News & Weather Cape Girardeau, Carbondale, Poplar Bluff

MDA Profile: Vienna woman with ALS

Joellen Newberry was diagnosed with ALS in 2011. Joellen Newberry was diagnosed with ALS in 2011.
Joellen scrapbooks, pieces together puzzles, and play computer games. Joellen scrapbooks, pieces together puzzles, and play computer games.
MDA helped the Newberrys get this machine to help Joellen talk. MDA helped the Newberrys get this machine to help Joellen talk.
The entire family used to clog together, until her muscles took Joellen out of the dance group. The entire family used to clog together, until her muscles took Joellen out of the dance group.
VIENNA, IL (KFVS) -

It's a mysterious disease, affecting one woman in a mysterious way.

ALS, or Lou Gherig's disease, attacks the nerve cells in the brain and spinal cord, which control voluntary movement.

It weakens the muscles until they're virtually unusable.

"It's a shock, it's a shock," said Ronald Newberry.

"It's just so hard to see her go through this, it's just so hard," said Linda Burnam.

It would be difficult for any family to go through.

"She has to have help getting her clothes on," said Ronald Newberry.

A wife, a sister, a mother, diagnosed with ALS.

"You go through those stages of just emotions you just want to cry and you want to hold on to her, you want to love her, you want to be there for her," said Burnam.

"A person always looks at the fact that they're going to be together for all time, and there's a chance that that may not be," said Ronald Newberry.

Joellen Newberry's family first noticed a problem when she would talk.

"Her speech was becoming slurred," said Burnam.

"When she spoke, it was like she was intoxicated," said Ronald Newberry.

"They started running multiple tests because ALS is very difficult to diagnose," said Burnam.

The family first noticed problems in the Summer of 2010, and didn't get a diagnosis until the beginning of 2011. Within a year Joellen had to use a feeding tube.

The entire family used to clog together, until her muscles took Joellen out of the dance group.

"Joellen was an active person," said Ronald Newberry. "She used to be big with her garden, and she can't do that anymore."

Now, she scrapbooks, pieces together puzzles, and play computer games. She doesn't do anything that requires too much muscle movement.

But all of that isn't even the worst part for Joellen and her family. The worst, is she lost her voice.

"My name is Joellen."

To talk, Joellen types what she wants to say into a machine that looks similar to an iPad. That machine then becomes her voice.

"I have to have this to talk," said Joellen Newberry.

In some cases, ALS targets muscles in the limbs first, like an arm or a hand. The muscles become weak, and almost useless.

For Joellen, the illness attacked her vocal chords, stealing her voice.

"The hardest part of this illness is the talking and signing," said Joellen Newberry.

"That's one thing I miss so much is not having a conversation with my sister," said Burnam.

MDA helped the Newberrys get the machine to help Joellen talk.

"It's not perfect, it does, it gets her point across," said Ronald Newberry.

Joellen said her grandson doesn't understand.

"He asked me if my muscle died," said Joellen Newberry. "Shook my head yes."

It's something they all question, but they stand strong for Joellen.

"I married her, strictly for life, and if it meant taking care of her, until I couldn't do anymore than that's the way it was," said Ronald Newberry.

"I thanked him one day for taking such good care of my sister and he said well what was I supposed to do, she's my wife," said Burnam.

"I have good family support," said Joellen Newberry.

Despite all the hardship Joellen Newberry keeps smiling.

She uses that positive attitude to persevere. She raised money for the MDA Walk in Cape Girardeau.

"She was the top money raiser for an individual," said Burnam.

Her family said MDA has been pivotal in coping with the disease.

"The ladies from MDA call her every few weeks see if there's anything she needs anything they can do for her, so they have been a big help, and they've called me and talked to me too," said Burnam. "So that's a big help when you have someone to lean on, and someone that's very knowledgeable."

"It's more behind the scenes thing," said Ronald Newberry.

A behind the scenes support, the Newberrys said they couldn't do without.

You can find out more information about ALS, and the support from MDA on the website here.

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