PUBLISHED: 1:58 PM on Wednesday, March 29, 2006
Former Juneau resident gets an ABC miracle

Courtesy photo
  Twyla, left, Tushyne and half-sister Shelby Eyre of Juneau will see their grandmother Charlene Lustig without tremors from Parkinson's Disease for the first time when they visit next year in Nevada.
Shaking uncontrollably, her head jerking with no warning and not being able to do simple tasks such as feeding herself is all Twyla and Tushyne Eyre have ever known of their grandmother Charlene LaLonde Lustig.

The 17-year-old twins, who are juniors at Juneau Douglas High School, have known their grandmother to be "on and off" since she was diagnosed with Parkinson's Disease in 1990.

"It's a real void. It's real sad when you want to hold your grandchildren but you're afraid to hurt them," Lustig said.

A meeting at a Parkinson's Disease Convention led Lustig to audition for the ABC television program "Miracle Workers," which follows patients before, during and after a major surgery.

The show featuring Lustig aired Monday, March 27.

"They kept calling me for tapes and interviews. I was pretty happy because I feel like I need to share what I know about Parkinson's," Lustig said.

Although she met Twyla and Tushyne Eyre when they were 2-years-old, the girls don't remember meeting until they were 10, said Tushyne Eyre.

"We can't see her much and never really hung around her, but when she would come to visit I would be scared helping her out of the car," Eyre said.

"She would be in her stiff stage and you'd have to shift her, and I didn't know how to handle something like that."

Lustig, 60, a graduate of Juneau Douglas High School who now lives in Mesquite, Nev. with her husband John, said she went to 20 doctors in two years following a card accident, to find out what was wrong with her.

"My mother had a brain tumor and came out of it fine. When I went to the doctors I was hoping that it was a brain tumor," Lustig said."He told me that the good news was that it wasn't a tumor, but the bad news was it was Parkinson's."

Courtesy photo
  Charlene Lustig with her husband John.
Lustig said she was unfamiliar with PD. She said PD is genetic and her father and uncle had battled it, as well.

The slow progression caused Lustig's hands and arms to shake, and eventually effected most of her body. Her neck jerked due to her medication.

"It's involuntary movement. You don't mean to, but weird things start happening," Lustig said. "I couldn't eat or go to the restroom alone. I would have about four hours where I could function and the rest of the day I would have to sit in my chair and sometimes cry."

Cameras were present as Lustig prepared for two brain surgeries to install electrodes at the brain to control her tremors.

"When you have 10 cameras there watching you do everything it's kind of invasive. I didn't realize it would be so much work, but we had to film things several times," Lustig said.

ABC recreated an award ceremony, which was originally held in 2003 to honor Lustig by the town of Mesquite for her community service work. She also took the camera crew to her son Terry's gravesite.

"We would like to see the footage they don't show. She said when they went to Terry's grave there wasn't a dry eye," said Susan George, Twyla and Tushyne Eyre's mother who corresponds with Lustig through e-mail.

Lustig had her first surgery Oct. 31 and a second surgery Nov. 4 to install the equipment used to trigger electrodes in her body. The first surgery was done with Lustig awake and without medication to ensure the doctors were operating in the correct area of the brain.

"You hear a drill in your brain and it's pretty loud," Lustig said.

Lustig said the operations have lessened her tremors and she feels that she has gotten her life back. CVS Pharmacy gave Lustig a $25,000 gift certificate for medications and additional treatments.

"I'm like a car because I have to get tuned up every couple of months," Lustig said.

She said she has also gotten her independence back.

"I'm actually driving a car for the first time in three years," Lustig said. "It's just been great. I feel like I'm educating the public on Parkinson's. It hits people a lot younger than just grandparents. Everyone with Parkinson's has a different take on it."

George said Lustig was nervous about the surgeries, but felt it was the best choice.

"She was really frightened, very nervous and apprehensive, yet excited. She was definitely hoping for the best because she wanted to grow older with her grandkids," George said. "I think she thought it was her last option."

Tushyne Eyre said she is happy the surgeries went well and is excited to see Lustig soon.

"I think it's going to be pretty cool to see how it all happened. It's going to be touch and emotional. I'm grateful that everything came out OK, and she's having improvements," Eyre said.

George said Lustig has made several trips to visit Juneau, and she doesn't let her disease stop her from doing the things she wants.

"She's very giving and generous. I have a daughter, Shelby a few years younger than the twins and she always includes her and takes her as her own," George said. "Her knack for remembering details is just amazing. If there's one thing that Parkinson's Disease hasn't affected is her memory and ability to pull from her wealth of knowledge. There's things she remembers that I've forgotten. For this, I'm grateful."