Tonya Walker married her husband, Chad, in December 2005, just two months before she started to notice something strange: Her left arm did not swing as she walked.
Walker, a practicing lawyer in Orlando at the time, thought she must have injured it. But a short while later, she found herself in a general neurology clinic getting her unexplained muscle weakness checked out. “Because of my age, they originally thought perhaps it was multiple sclerosis, but it wasn’t,” Walker says. “The doctor told me, ‘I think you have Parkinson’s disease.”
As soon as she suspected Parkinson’s disease, Walker decided to have a child as soon as possible.
Little is known about the effects of drugs used to treat Parkinson's disease in women of childbearing age; there was nothing of note in the medical literature. Since she and Chad definitely wanted children, the doc advised her to work on her family first, before treating what was likely Parkinson’s disease.
So that’s exactly what the couple did. Walker got pregnant quickly. While she was carrying her son, her symptoms worsened; she was slow, not able to dress on her own, and dealing with rigidity. After her son Chase was born, she feared the muscle weakness in her upper body might cause her to drop her infant son.
Walker received an official diagnosis of Parkinson’s and began treatment, which initially improved her symptoms.
The couple went back to the same neurologist, who referred Walker to Mayo Clinic in Jacksonville. After a battery of tests, she was officially diagnosed with Parkinson’s disease. Parkinson's is a progressive disorder of the nervous system that causes tremors or rigidity, in addition to other symptoms like impaired balance, slow movement, speech changes, and loss of automatic movements like blinking.
After spending two hours with Mayo Clinic doctors to discuss treatment options, Walker opted for their recommendation. “I started on a low dose of the ‘gold standard’ drug for Parkinson’s, and immediately felt a cognitive difference,” she explains. “We upped the dose as needed, because symptoms are progressive.”
She and her husband focused on their kids and careers—until the symptoms got so bad they had to face them head on.
In the beginning, Walker’s symptoms were manageable. She and Chad also had other challenges to occupy her mind. “We didn’t really talk about it at first,” she says. “We really were focused on our careers and raising our son. However, the dystonia [uncontrollable muscle contractions], which can be induced from the drug I was on, eventually got so bad. Chad said, ‘Okay, we have to talk about this.’”
The dystonia caused muscle contractions in the feet, over which Walker had no control. “My feet would would turn to a 90-degree angle,” she says. “I would have warnings that it was coming on, but one time it happened while I was driving and my son was in the car—which was incredibly scary to have my son and not be able to brake or press the gas pedal with my right foot.” That was the moment she decided to pursue the more aggressive treatment option: brain surgery.
Concerned for her family’s safety, Walker opted for brain surgery.
Walker had her first surgery for deep brain stimulation (DBS) in August 2013, her second in April 2015, one to tackle symptoms on each side of her body. Electrodes were implanted in her brain, which are connected to wires that run down her neck to a battery pack (sometimes called a “brain pacemaker”) just under her collarbone. The electrodes stimulate the regions of the brain that control the bodily movements affected by Parkinson’s.
After her first surgery, the results were astounding. Walker was able to immediately get up from her bed in her hospital room and use the bathroom on her own. The extreme fatigue she’d been experiencing for years had suddenly evaporated. She could drive without trouble. She could type on the computer, regaining her dexterity. “My dad said, ‘Tonya, I can see that sparkle in your eye again,’” she explains. “And it really was back.”
The surgery worked, and allowed Walker to pursue her career and hobbies again.
Walker also regained her balance, as another positive side effect of the DBS—which was cause for major celebration. A longtime shoe fanatic, she’d given up her high heels early on in her Parkinson’s journey in favor of more practical footwear like flats. With renewed balance, she was finally able to put on heels again and walk with ease.
She started a blog, The Shoe Maven, to raise awareness for early-onset Parkinson’s and further enjoy her renewed obsession. Standing barely 5’0” tall, Walker was overjoyed to wear her favorite footwear again. “It felt so empowering,” she says. “It might sound trivial to some, but Parkinson’s had stolen so much from me. I was glad to finally have this back.”
Today, Walker stays incredibly busy. She has stopped practicing law full-time, but still uses her writing and researching skills as a law professor; she teaches two separate classes, twice a week each. She updates The Shoe Maven about twice a week, and serves as an advocate for early-onset Parkinson’s in other ways. Last year, she was invited to connect with others with PD at the World Parkinson’s Congress in Oregon, and also took part in a video series for Parkinson’s More Than Motion.
Focusing on positivity and choosing to life joyfully helps Walker thrive. Her son, Chase, is now eight years old.
Walker has been a mom through it all, which is where she’s found her strength is greater than she ever imagined. “My husband says, ‘I always thought our son would learn to be a fighter from me, but he’s learning it from you,” she says. Chase is now eight years old, attending school and playing flag football.
She says that her life has changed since her diagnosis, but it has not stopped. Walker often references “The Spoon Theory” by Christine Miserando. The premise is that everyone has a finite amount of energy to spend each day. Some are luckier than others, but we all get to choose how to spend our time—each portion of it, a small gift to dole out.
Walker tries to spend each bit of her time and energy in positive, worthwhile ways. She is often asked, ‘How do you do it? How do you get up everyday and look so strong?’ It’s hard to answer, exactly. “I guess I just want to be an inspiration,” she explains. “We all have something we battle everyday. So, get up, hold your head up high, and choose joy.”
http://www.self.com/story/what-its-like-to-be-a-mom-diagnosed-with-parkinsons-disease-at-age-34
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