- Monica Schulman was diagnosed with Parkinson's at age 37
- She says she's still trying to move past denial and into fighting
- People under the age of 40 make up about 15% of all Parkinson's cases
(CNN)Sometimes, you don't know the exact moment when your life has changed.
For Monica Schulman, 38, one of the first signs that her health -- her life -- had changed was so slight that it only began to bother her because it kept happening.
"I was standing in the bathroom, and I kept noticing while I was brushing my teeth that my left side toes kept kind of curling under, and they were getting tense all of a sudden. And I really didn't think anything of it for months, but I kept doing this," said Schulman, of Atlanta, a part-time teacher and a mother of four. "And I was thinking: This is so weird. I don't know why I keep curling my toes under."
Though it was unusual enough to make her pause, she did not go see a doctor. Schulman took that important step only after noticing another symptom.
"I was visiting my sister in New York, who at the time was going through chemo because she got diagnosed with breast cancer, and we would be walking a little bit through Manhattan," Schulman said. "And I kept telling her, 'My left arm is just not swaying!' "
She'd never thought about arm movements, but once she experienced it, she knew that something was off: "My arm was just kind of tight, and it was just laying there."
She also felt the barest shiver of a tremor that was unnoticeable to other people. She'd gone to the doctor some time ago about a tingling sensation, and he had run some tests -- "I think he was trying to see if I had (multiple sclerosis)" -- but he'd found nothing wrong. "You're fine, you're fine," he told her.
After her trip to New York, she turned to Google before consulting a physician.
"I pretty much diagnosed myself," Schulman said. "I typed my symptoms in, and everything that popped up that I read was Parkinson's-related."
A neurological disorder, Parkinson's disease can bring tremor, stiffness, slowness of movement, trouble balancing, problems walking and difficulty coordinating movement. These are the obvious symptoms and the reason why Parkinson's is sometimes referred to as a "movement disorder." Yet other symptoms are also common: Patients can experience depression, sleep problems, anxiety, fatigue and constipation.
After her Google search, Schulman turned to her family: "And everybody was like, 'You do not have Parkinson's. You're too young.' "
Most Parkinson's patients are diagnosed around age 58.
"They're like, 'You're crazy,' " said Schulman. "And I was like, 'I really think I do.' "
In the face of disbelief, Schulman knew that she needed to find the best doctor to validate her self-diagnosis. After more research, she asked her husband, Jeremy, to help her get in to see Dr. Stewart Factor, a neurologist and director of the Movement Disorders Program at the Emory University School of Medicine in Atlanta. He is an expert in the field, and his appointment calendar is booked many months in advance.
Her husband told office staff members, "she's really young; she's freaking out," and eventually they took pity and found a time for Schulman to see the doctor sooner rather than later.
In a waiting room filled with elderly people, Schulman gloomily observed the same symptoms she was experiencing: the rigidity, the tremors. Her name was called.
"The first time Dr. Factor saw me, he was like, 'Wow, you're young,' " she said. Immediately, he explained that there's no "100% test" to tell somebody they have Parkinson's disease.
Still, the news was grim. After a symptom check and neurological evaluation, he said he believed that Schulman had Parkinson's.
"I was OK, but pretty hysterical," Schulman said.
The cause of Parkinson's
People under the age of 40 make up about 15% of all Parkinson's cases, according to Factor.
"We call that young-onset Parkinson's, while under the age of 20 is juvenile-onset of Parkinson's disease," Factor said. "That's much less common. The youngest person I've personally seen with Parkinson's had onset at age 18."
Why some patients develop Parkinson's at a very early age is not completely clear, explains Dr. Rebecca Gilbert, an associate professor of neurology at NYU Langone Medical Center. "But it does seem that patients who get it early tend to have a more prominent genetic component," added Gilbert, who is also a movement disorder specialist.