Despite his suspicions, the neurologist didn't officially diagnose Tonya or start her on medication right away.
"My husband and I were in complete denial.”
Tonya Walker was 32 when all of a sudden her arms stopped swinging as she walked, and she lost dexterity in her left hand.
“Initially, I thought maybe I injured myself working out. I’d recently tried yoga and other things that I don’t normally do, so I thought I’d pulled a muscle,” the Orlando-based law professor and lifestyle blogger explains. “But when the movement didn’t come back, I knew something was wrong.”
In February 2006, Walker, now 43, visited her primary care physician who thought she had multiple sclerosis because of her age and symptoms. So he sent her to a neurologist. But the neurologist suspected Parkinson's disease.
"I couldn't believe that either could even be an option," Tonya remembers. "My husband and I were in complete denial—we just sat there and listened; I don't think we even talked about it afterward."
Despite his suspicions, the neurologist didn't officially diagnose Tonya or start her on medication right away. Tonya wanted to start a family, so her doctor told her to come back after she and her husband had children. (Plus, Parkinson's medications can potentially cause birth defects.)At the time, in addition to physical tests the only way to diagnose Parkinson’s was to start the medications used to treat the disease. If they helped, it was confirmation that you had the disease—and you'd take them for the rest of your life.
So Tonya continued living with her symptoms sans medicine, and shortly after her diagnosis she became pregnant. Unfortunately, due to the increase in hormone production during pregnancy, the rigidity, joint stiffness, extreme fatigue, and distruptive sleep she'd been experiencing worsened. “I couldn’t even dress myself without my husband helping me,” she says.
After her son was born in June 2007, Tonya went back to the neurologist, who got her the earliest appointment possible at the Mayo Clinic—March 2008. That's when doctors ran more tests, started her on medication, and officially confirmed what Tonya and her doctors had long suspected: She had Parkinson's disease.
Because the disease is so rarely diagnosed in people her age (about 10 percent of the one million people diagnosed in the U.S. every year are under the age of 50, according to the Parkinson's Disease Foundation), Tonya and her husband didn’t deal well with what life with Parkinson's meant for them moving forward. She says there's a serious lack of information for young people with the chronic movement disorder. Whenever she tried to find help online, the discussion boards were generally negative and not supportive. That led to stress—which made her symptoms worse—and a shut-down of communication between Tonya and her husband.
“I was busy practicing law and he was too, so we kind of just stuck our head in the sand and ignored it,” she says. “I didn’t tell anyone except my immediate family; we wouldn’t communicate because we didn’t know what to say. We failed to appreciate how drastic the diagnosis really was."
After about a year, Tonya's doctor lowered the dosage on her medication to alleviate some of the negative side effects she was experiencing (like excessive movement). Unfortunately, that led to more rigidity through the left side of her body. "My fingers curled up and my arm hung at my side, almost to the point where you’d think I had a stroke," she says. "I basically didn’t have use of that side of my body for years.”
She also noticed a lot of slowness creeping in. “My brain would be telling my body to move, but I felt like I was in quicksand,” she says. “It was incredibly frustrating, so I didn’t want to go do things. And that led to a dark depression.”
It took a near-death experience in 2013 for Tonya to understand that she couldn't continue living in her current state. While driving on the interstate with her 5-year-old, her right foot suddenly turned at the ankle nearly 90 degrees. Unable to move it due to its rigidity, she quickly switched to driving with her left foot until she was able to pull over and take her medicine. But the incident was enough to make her realize she was endangering the life of her son, herself, and those around her.
So that October, her doctor put her on the list for deep brain stimulation surgery. During the procedure, doctors would implant electrodes into the part of the brain that controls motor function, and place a pacemaker-like impulse generator in the chest to send electrical signals to the electrodes. All of this would hopefully lessen her symptoms, and the following summer Tonya was told it was time—right after her 40th birthday. “I considered it a birthday gift,” she says. “I knew it was the right thing to do.”
Brain surgery required Tonya to be awake so that they could gauge her reaction to ensure they were triggering the correct part of her brain. After drilling a hole (which Tonya says she couldn’t feel except for added pressure), doctors inserted the electrodes before turning on the neurostimulator.
“It was like a light switch was flipped,” she says of the experience. “All of a sudden my left leg completely released and I could move my fingers again. It was amazing.”
Once she was out of surgery, Tonya knew it was a success. “I felt great, like I was back to my old self,” she says. Within a month, she was back at work and itching to share more of her story. So she started The Shoe Maven in May 2014, named after she was able to put on her favorite high heels and wear them without falling, in the hopes of raising awareness about young people with Parkinson’s.
Unfortunately, Tonya’s right side began experiencing the same issues her left side had about six months after that initial surgery. But doctors knew what would fix the issue, so in April 2015 she went back in and had the same device implanted on the right side of her brain.
Since then, Tonya says her symptoms have definitely subsided—before she was taking over 20 pills a day; now she takes nine. That, in turn, has allowed her to rediscover her passion for fitness. “Before the surgeries, I had indescribable physical exhaustion—a catch-22 since exercise helps ease the symptoms of Parkinson’s,” she says. “But now I have energy; I can go play outside with my son, ride bicycles, run. I even box twice a week.”
Still, it’s hard to predict what will happen to Tonya’s health long-term. “My hope is that there is a cure,” she says. “Until then, I try to wake up each day and choose joy and thank God for what I have.”
And to those living with Parkinson’s, Tonya’s message is simple: Don’t give up. “You need to fight every day and not let the disease take from you, because it will try to take from you every day,” she says. “Know that you’re not alone, and there are resources out there to help you live life as best as you can (like the More Than Motion community on Facebook). Life doesn’t have to end because you have Parkinson’s.”