Denise Wallace lives life with Parkinson’s while educating others

By VALERIE BUCCIO 

Denise Wallace, 59, had awake brain surgery to have a deep brain stimulator device implanted in her brain that leads down to a battery in her chest. The device helps control Parkinson's disease symptoms.

Thursday, May 19, 2016 

HICKORY — Denise Wallace was driving down the highway when the left side of her body went completely numb. Her initial thought was a stroke. However, after arriving at the Emergency Room (ER), doctors told her that was not the case.

“I have Parkinson’s, but Parkinson’s does not have me,” Wallace said.

Wallace, 59, has had Parkinson’s disease for 17 years, if not more, because she was misdiagnosed for eight years.

After seeing five neurologists, they told her she had MS when she was 42 years old. She was diagnosed with Parkinson's disease when she was 50 years old.

For five years, she was on steroids for MS that gave her several side effects and made her feel poorly. The steroids did nothing to help her, she added.

Eventually she saw a doctor from Johns Hopkins Hospital who decided to throw out everything they have done so far and started with a clean slate, Wallace said.

The doctor gave Wallace Parkinson’s disease medicine, and after two days, she went from a wheelchair to walking.

“It blew my mind,” Wallace said.

After seeing the Johns Hopkins doctor for several years, she switched to a doctor at Duke Hospital. He recommended Wallace get a Medtronic deep brain stimulator (DBS) device, a pacemaker for the brain, she added.

The DBS has two leads implanted in the brain that are attached to a neurostimulator near the collarbone, Wallace said. Inside the neurostimulator is a battery and a chip that sends electrical pulses to help control Parkinson’s disease symptoms.

Wallace said her first awake brain surgery was eight years ago. She had a second surgery a year ago.

“You hear them drilling, cracking the bone and you don’t feel it, you don’t feel a thing,” Wallace said. “Isn’t that wild?”

During the surgery, she was awake in order for the surgeon to hear her speak and ask her to do small movements to make sure nothing was tweaked during the procedure, Wallace said.

Once she arrived home after the surgery, she had a seizure, Wallace said. During the seizure, she bit her tongue and bled all over her pillow.

Although she couldn’t drive and was on a certain medication for a month, that was the only episode. No more seizures or complications came.

Two weeks after the surgery, the DBS turned on and she went from shaking to steady immediately.

Seven years after the initial surgery, the DBS stopped working because an electrode from the device in her brain had a shortage that needed replacing, she said.

“I’d be walking then I’d stop, I’d get frozen,” Wallace said.

At age 58, she had a second awake brain surgery to fix the electrode.

“I knew immediately after I had the surgery that something was not right,” she said.

One of the leads in her brain moved 1 millimeter, which they knew was a possible risk, Wallace said.

“It’s one of those things where they told you there were risks, you can do it and it may make you better or you can do it and it may make it worse, it’s like what do you do?” Catawba Valley Medical Center (CVMC) Physical Therapist Caroline Windham said.

Wallace said she takes more Sinemet, Parkinson medicine, to compensate for the lead moving and electrodes not working correctly. More medicine means more shaking than usual though, she added.

“I’m like a rollercoaster all day,” Wallace said. “It’s up and down all day, and it makes me so mad.”

Parkinson’s disease causes no production of dopamine, which helps walking and function, so the medicine replaces the dopamine, Wallace said.

Wallace is on the list to see a specialist from the University of Florida. The specialist had her records for five months before deciding to accept her into the program.

“This guy in Florida is world renowned, and I’ll do what he says,” Wallace said. “If I have to rent an apartment down there to stay, I’ll do it.”

Between the ages of 15 and 22 years old, Wallace had 26 surgical OBGYN procedures due to several medical conditions.

“I’m wondering if being put to sleep so many times had anything to do with (having Parkinson’s),” Wallace said.

Therapy

Wallace joined the BIG & LOUD Therapy Program at CVMC with Windham at the end of 2014, Wallace said.

The program is four days a week for four weeks including techniques to help patients’ range of movement, Windham said.

BIG & LOUD was made for people with Parkinson’s disease, Windham said. Anyone with movement disorders or speech impediments will benefit from the program though.

Parkinson’s disease comes in five stages: 0 being no sign of disease and 5 being wheelchair or bedridden, Windham said.

“The bigger they move, the more normal it looks for Parkinson’s disease patients,” Windham said.

They do standing, walking, sitting, twisting, and reaching movements during the therapy sessions, Windham said.

“When I’m walking, I can just say ‘big steps,’ I think about it,” Wallace said.

To patients the movements feel huge, and the goal is to find a norm for each individual.

“If they learn the techniques early and how to move, they hopefully can apply them long-term,” Windham said.

At the beginning of therapy, Wallace was doing the Parkinson’s shuffle where she would shuffle her feet when walking instead of taking strides, she said. By the end, she was walking normal with no cane assistance.

“I did remarkably,” Wallace said.

The third week of the program, Wallace did a 5K for National Parkinson’s Foundation with her whole family.

“You got to have a positive attitude, a support system and a lot of oomph,” Wallace said.

Her family has been a support system she is grateful for, Wallace said. Her husband, Dan Wallace, her daughter, Kimberly Wallace, her son-in-law, Joe Repaire, and her grandson, Graham Repaire told her from the beginning they would do what they can to help and they have.

Shortly after she graduated from the program, she had the second brain surgery that required six months of recovery, Wallace said.

Wallace wasn’t able to do the BIG therapy program again due to her condition after the brain surgery, she said. She got back to walking, but not to the extent of before, she added.

Wallace recently finished eight weeks of therapy. She will go on sabbatical and then return.

She now goes in for small tune-ups instead of the full program because she is doing so well.

Wallace also has small daily homework assignments from Windham.

“Sometimes I can do it, some days I can’t, but I religiously try every day,” Wallace said.

Educating the community

Throughout this process, Wallace hasn’t let Parkinson’s stop her from living.

She has done yoga for 15 years and continues to do it every week, she said. The days she doesn’t do yoga, she uses exercise machines.

“I do Yoga three times a week, I’ve done it for 15 years and that’s a godsend,” Wallace said. “I do it religiously, you cannot stop me.”

Wallace strives for people like her or people with movement disorders to stay active and keep fighting.

She wants to implement Rock Steady Boxing at the fitness center at CVMC. Parkinson’s patients would do it three times a week and improve physically and mentally, she said.

A few concerns are not having enough people participate, but Wallace said, “You get it, they’ll come.”

Along with trying to find new classes and therapy for people with Parkinson’s, Wallace speaks at churches and other events on a National level as the Ambassador of Michael J. Fox Foundation.

“If I can talk, I’m going to do it,” Wallace said.

She has talked with hundreds of people about the deep brain surgery to help people decide whether to do it or not since she has experienced it twice firsthand.

“God has a plan for all of us, and mine is to educate people,” Wallace said.

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