CLARKSVILLE, Tenn. (CLARKSVILLENOW)- Brittany Schurtz is a young mom who wants nothing more than to see her 3-year-old daughter, Sydney, grow and lead a full, happy life.
However, the 27-year-old single mother has an uncurbable, rare, progressive disease that you often hear of afflicting older ones: Young-Onset Parkinson’s Disease, a disorder that has gradually debilitated Schurtz’s quality of life since she was a teenager.
What started out as a hand tremors and rigid leg muscles at 14, led to years of searching for answers as symptoms worsened.
“My walk kept getting worse. The tremors were getting worse,” Schurtz said. “I felt I’d wake up paralyzed one day. I knew something wasn’t right with my body. When I couldn’t walk, I’d crawled. ”
At 16 years old, she started losing her mobility. Due to balance issues, she began using a cane and later walker to get around.
“I was 21 years old and had to rely on a walker, but my balance got progressively worse,” she said. “I was falling 10 to 20 times a day and by the time I was 22 years old I was wheelchair bound for over a year.”
What felt incredibly restrictive to Schurtz at first, challenged her to make the best of her situation.
A friend taught her to dance in her wheelchair. She learned Paralympic adaptive sports to stay active.
She even bedazzled her walker to make it more personal.
“It was incredibly humbling,” Schurtz said. “I hated them both at first, but I had no choice because it helped me be functional. Honestly, I got to a point I was just grateful not to crawl everywhere or no longer fall…I’ve always tried to stay positive and done whatever I could with what I have.”
During that time, she became a mother.
But for many years, there was no name to what was wrong with her body. She visited chiropractors, neurologists and specialists and test would come back normal. She was even told that it was ‘in her head.’
The then military spouse followed her now ex-husband on a deployment to Anchorage, Alaska and it was there she got her answers.
Young-Onset Parkinson’s Disease: a rare disease for someone her age. Since her symptoms began at a young age, she is also classified as having Juvenile Onset Parkinson’s disease, the rarest form of the disorder.
Symptoms of Parkinson disease include rigidity or stiffness of the limbs and torso, slow movement (bradykinesia) or an inability to move (akinesia), and impaired balance and coordination (postural instability). These symptoms worsen slowly over time. Parkinson’s Disease can also affect emotions and thinking ability (cognition). Some affected individuals develop psychiatric conditions such as depression and visual hallucinations. People with Parkinson disease also have an increased risk of developing dementia, which is a decline in intellectual functions including judgment and memory, according to the National Library of Medicine (NLM).
“I was shocked,” Schurtz said. “I was relieved to finally have a name for my suffering and scared not knowing what my disease progression would be like. However, I also felt accomplished because I never gave up searching to identify what I was experiencing despite the countless tests that came back normal.”
Her life has been impacted greatly as she’s had to stop working at times as a CNA, doing in home care.
“Before I was diagnosed I was really bad off. When I was in my wheelchair and couldn’t care for myself, I had to ask people to do things I used to do for myself,” She said. “To be able to do that for somebody and offer them the abilities and give them comfort was really important to me..”
She is taking a semester off at Austin Peay State University where she’s a junior. She was studying healthcare administration, but will major in Physical Therapy and minor in Early Childhood development when she returns. Her future goals include working as a physical therapist with the Wounded Warrior Project.
Dr. Heather Koons, a movement disorder specialist at Vanderbilt University Medical Center, is Schurtz’s neurologist and said most Parkinson’s patients are 60 years old or older. Anyone under 40 years old is considered to have Young Onset Parkinson’s Disease, which is relatively rare, but becoming more common.
Schurtz, like most Parkinson’s patients, suffers with dyskinetic or uncontrollable body movements that get worse as they are trying to be controlled, she also has dizziness, lack of balance rigid joints and muscles, uncontrollable tremors, fatigue and wide-spread body pain. She takes multiple medications, most with adverse side effects, to control the symptoms.
“Everyone is floored when I tell them I have Young Onset Parkinson’s Disease or YOPD,” Schurtz said. “I’ve never seen anyone not surprised.”
Schurtz’s motivation to find a solution and persevere is her daughter Sydney, a 3-year-old with a lot of energy and love to give her mommy.
“On my bad days, I’ll wake up and can barely get up. My whole body hurts and I have tremors, internal and external. I’m rigid and stiff and it’s hard to talk, sleep, and walk,” Schurtz said. “And on a good day, I can feel pretty normal. I can play tea party with my daughter. …”
A chance for a better life
Schurtz’s medical journey has led her to a process called Deep Brain Stimulation, a three-part surgery where electrodes are implanted into the brain to help control Parkinson’s Disease Symptoms.
Schurtz is scheduled to get the procedure at Vanderbilt University Medical Center on April 7,15, and 20th. After healing from the implantation process, she will have the DBS system turned on.
“This is my chance at a future,” Schurtz said. “They don’t know how the Parkinson’s Disease will progress and it will buy me some time and give me a better quality of life.”
Dr. Koons said her hopes is the surgery will give Brittany more good days and less medicine.
“Deep Brain Stimulation is able to mimic what the medicines do, but it is constant. It’s idea for a patient like Brittany who has to dose her meds frequently and has more dyskinesia (involuntary muscle movements),” Koons said. “I’m very optimistic about the DBS being able to mimic the benefits she’s getting from her medication without causing the side effects she has now. I hope she can move through her day and resume leading a much more normal life, because she will have consistent movement without the side effects.”
The three part surgery includes having screws put into her skull, followed by electrodes that will be turned on and programmed at a later date. She will have a pacemaker like device put in her chest and connected to her brain. Later the stimulator in her chest is turned on via a tablet and her medication reduced to let the DBS take full effect, Koons said.
“For the rest of her life she’ll have periodic adjustments,” Koons said. “One of the most interesting things is you can see very dramatic when it’s initially turned on.”
DBS is used to treat two main diseases: Parkinson’s and Essential Tremors or Dystonia. DBS has been around for almost 20 years and has a high success and satisfaction rate.
Brittany will be one of the 100-150 DBS surgeries performed at Vanderbilt this year and is preparing to begin her journey with excitement and some fears.
“I am excited to start a new life for myself and my daughter and to regain my independence,” She said. “I am excited to contribute to Parkinson’s research through the DBS database called the registry for the advancement of deep brain stimulation in Parkinson’s disease. …I am greatly excited to be able to decrease my medications and not suffer so much from the numerous side effects.”
She admits possible negative results from the surgery and being alone are her fears. Volunteers from church and possibly her dad have agreed to help care for her, but she has a volunteer care account set up as well. With her ex-husband deploying soon, her split custody agreement will be modified and she will be taking care of Sydney full-time while healing from surgery.
She will have her head shaved and have several stints of healing and recovery. Brittany has a long journey ahead, but is excited to have a semi-normal life afterwards.
“After surgery, Sydney and I plan to move to Tuscon. Her dad is deploying and I will be able to spend the summer time with her and enjoy doing outdoor activities,” Schurtz said. “She wants to join a soccer team and go to summer camp. I’d love to volunteer at her summer camp.”
Brittany said camping is also in the plans when she is able to move without the unpredictability of Parkinson’s and the side effects of medication.
Those who are on her support and care team have high hopes for Brittany Schurtz.
“It’s unique with Brittany because she’s young with a daughter. She’s on the social side of figuring out how to get through her disease and get through these therapies,” Koons said. “It will ultimately allow her to do soe much with her life. There are a lot of barriers when you have kids and need to get that support. She’s doing an amazing job.”