DU QUOIN — Don’t expect Cary Ann Bailey to give up.
The 37-year old Du Quoin resident was diagnosed with Early-Onset Parkinson’s Disease two years ago, but the mother of two — Cody, 17, and Chloe, 12 — refuses to give in to the neurological disease.
“Those kids are my everything, and I just don’t want them to see their mother suffer or be sick, so I’ll do whatever it takes so they won’t have to see me suffer or be ill,” Bailey said.
About two years ago, the nurse practitioner was assisting a cardiologist with a stent when she couldn’t stop her hands from shaking.
“Cary, why are you shaking?” the cardiologist asked. “You’ve been doing this for 13 years.”
She initially chalked the tremors up to stress. But after going to two neurologists and becoming the first person in St. Louis to receive a DaTscan, Bailey received a phone call while attending a cardiovascular conference that turned her world upside down.
She could barely hear her doctor, Dr. Pratap Chand, and thought he said her test was negative, but Chand had to tell her a second time, “No, honey, you do have it.”
‘It was like identity theft’
As a nurse, Parkinson’s wasn’t a strange word to Bailey, but it also wasn’t a friendly one.
“I had taken care of so many Parkinson’s patients,” Bailey said. “I had to put Parkinson’s patients in Hospice because of their symptoms. The first thing I thought in my mind was, ‘I don’t want to be a burden on my husband, and I don’t want my kids to see me like this.’”
Parkinson’s Disease causes nerve cells that produce dopamine in the brain to die or become impaired, eliminating or hampering the chemical responsible for delivering signals that produce smooth and purposeful movements.
Without the signals, Parkinson’s patients suffer trembling, body rigidity, slowed movement and impaired balance.
Bailey continued working at Marshall Browning Hospital after her diagnosis, but had to quit in August when the disease made walking and writing difficult.
“It took away my job,” Bailey said. “It took away my life. All of a sudden, I went from this person who was handling 15 to 20 patients a day to sitting on my couch at home. It was just like identity theft. It just took everything away from me.”
‘I’m very happy’
It was losing “everything” that convinced Bailey to give a procedure called Deep Brain Stimulation a shot.
Chloe didn’t want her mom to have the procedure that sends electrical impulses to specific parts of her brain, but Bailey couldn’t stay on the couch any longer.
“My poor Chloe — she had a hard time with the surgeries,” Bailey said. “She actually told me she didn’t want me to do it, but I told her, ‘Chloe, we have to try. I can’t just sit here and get worse.’”
DBS requires two surgeries — one to run the electrodes in the brain and another to implant the generator box. After the electrodes were run, they were turned on briefly to make sure the electrodes were connected properly.
Immediately, her tremors disappeared.
“I’m happy. I’m very happy,” Bailey said through tears as she looked at her left hand resting calmly.
Two weeks after the second surgery, the generator was turned on for good and again, the tremors disappeared and so did the rigidity caused by her disease.
Running a 5K
But that was just the beginning of Bailey’s fight against the disease.
Knowing exercise is the best way to fight the illness, she dedicated herself to running and to realizing her goal of completing a 5K — a feat she accomplished less than three months after undergoing Deep Brain Stimulation.
“My goal was to run a 5k,” Bailey said. “That was my physical therapy for myself. I’ve never done it before. I ran a 5k for Parkinson’s, and I had $2,500 come in for the American Parkinson Disease Association.”
Leah Cuff, the nurse practitioner who assisted in her surgeries, ran the race with her.
“We were all cheering her on and running with her for her to finish it in the time that she had set, and she did it with time to spare,” Cuff said. “She started crying. I was crying with her.”
Saluki Swim Club members Kelsey Walker, Eleni Robinson and Emily Stroud, were inspired to do a fundraiser for the APDA in honor of Bailey.
More than 50 kids participated in the April 28 swim-a-thon that raised $3,000 for Parkinson’s research.
“They were lap swimming for money, and they were just going and going and going,” Bailey said. “I thought, ‘Oh my goodness, they’re doing this for me.’”
Bailey is far from cured. She still has to take Sinemet, which converts into dopamine in the brain, and Azilect, which reduces the breakdown of dopamine.
But Bailey looks at her illness as an opportunity to show other people what can be done with the disease.
“I just want to keep inspiring people,” Bailey said. “I want to keep showing people this isn’t a death sentence. You don’t have to become debilitated.”
Cuff is amazed at her uncommon determination.
“At her age, to be diagnosed with a chronic illness would be devastating for most people, and she has looked Parkinson’s right in the face and said, ‘I’m going to live my life as best I can with or without it,” Cuff said.
Getting back to work
Bailey is eager to be back on the other side of the hospital bed.
“I’m just ready to get back to work and take care of people,” Bailey said. “That’s what I love to do.”
She has a couple job interviews lined up and is ready to put into action what she’s learned the last two years.
“I’m the one being taken care of now,” Bailey said. “I realize now the patient is vulnerable. They are so vulnerable in your hands. I will think of that every time I take a patient to a procedure. It won’t just be another patient.”
‘I’m going to win’
No one would blame Bailey if she felt sorry for herself for being one of less than 150,000 with Early-Onset Parkinson’s. But Bailey sees herself as a woman with a mission and not a statistic.
“God has chosen me for this because he knows I can go out there and influence other people,” Bailey said. “I don’t feel any resentment about it because He has personally picked me to go out there and help other people with this disease.”
Bailey has a long, uphill climb. If she starts having tremors on the right side of her body, she’ll have to have Deep Brain Stimulation on the left side of her brain and her long-term future remains unclear.
But one thing’s for certain, Bailey’s love for her two kids and her husband, George, will not let her back down from the disease. Chloe and Cody are both great students and swim with the Saluki Swim Club. Cody will be swimming for SIU next year.
“I think that’s why I’m fighting so hard,” Bailey said. “I know what it looks like. I know what happens. That’s why I’m fighting like a cat fight, and I’m going to win.”