AT 47, SHE WAS DIAGNOSED WITH EARLY-ONSET PARKINSON'S DISEASE. NOW, SHE'S RAISING AWARENESS FOR WOMEN EVERYWHERE: 'MANY PEOPLE STILL THINK OF AS AN OLD MAN’S DISEASE'

It started as a twitch in her ankle. In 2018, when she was 43, Allie Signorelli noticed an intermittent sensation that didn’t go away. At her next annual check-up, Signorelli asked her primary care physician to take a look. The doctor labelled it as a “benign nuisance” and said it would stop — but it never did.

Over the next four years, her symptoms would progress to include tremors, issues with swallowing and limited mobility in her right arm. A month before her 48th birthday, Signorielli received an official diagnosis: early-onset Parkinson's disease, also known as young-onset Parkinson's disease.

While searching for answers, the Canadian-born, Arlington, V.A.-based advocate and author often found herself minimizing her symptoms. “

“There was definitely a voice inside my head, based on previous experiences as a woman, that was like, you’re making this into a bigger deal than it is. This is not something major,” she said in a recent interview with Yahoo Canada. Signorelli, who hosts the podcast Too Young For This Sh*t, says younger women tend to downplay their symptoms, which can lead to delayed diagnosis. “We are managing our households, our jobs, our children, our spouses, and in some cases, we are caregiving for an older generation, our parents.”

Although the risk of developing Parkinson’s is nearly twice as high for men, women actually have a higher mortality rate and a faster progression of the disease, according to 2019 research.

As researchers continue to investigate how men and women experience the disease differently, including the role hormones play in Parkinson’s, advocates like Signorelli are raising awareness about the fact that Parkinson’s is not just a “man’s condition.”

“At 43, I didn't even know that women my age could have Parkinson’s,” Signorelli said. “The only person I knew who had it young was Michael J. Fox. That was it.”

According to Parkinson Canada, men are 1.5 times more likely than women to develop Parkinson’s. Men account for 57 percent of people currently living with Parkinson’s, while women make up around 43 percent. This makes it challenging for women to get timely diagnoses, much like Signorelli experienced. Despite her symptoms, many tests came back normal.

It wasn’t until a neurologist recognized the symptoms, about four years later, and referred her to a specialist who ordered a DaTscan, an imaging technique specifically used to help diagnose Parkinson’s.

Within two weeks of being diagnosed, Signorelli got involved with organizations such as Parkinson Canada, the Michael J. Fox Foundation and Parkinson’s Foundation. She signed up for a fundraising cycle ride and raised $12,000 with family and friends. She also started sharing her experience on Instagram. She has since grown a community of more than 70,000 followers.

“Hopefully, we raise enough awareness that women are counted, considered, and centered in conversations about this disease that many people still think of as an ‘old man’s’ disease,” she said.

“There are unique considerations when it comes to Parkinson's disease in women,” said Dr. Sarah Lidstone, a neurologist and physician innovator for Parkinson Canada.

People with Parkinson’s experience motor symptoms, such as tremors, slowed movement, difficulty with gait, posture, and balance, and joint stiffness. “However, that’s only the tip of the iceberg,” Lidstone told Yahoo Canada.

There are also autonomic symptoms, such as constipation and changes in bladder function, as well as in blood pressure and heart rate. Mood and psychiatric symptoms include depression, anxiety, apathy, and even hallucinations in later stages. However, women may present with different symptoms compared to men. Women may experience more non-motor symptoms, such as mood symptoms like depression, anxiety, pain, and fatigue.

Other considerations, including hormonal fluctuations, can affect how women experience symptoms, although more research is needed in this area. “If someone's feeling pretty lousy because they are in a menopausal state and they also have Parkinson's, it's going to make Parkinson's symptoms worse as well,” Lidstone explained.

Women also tend to respond to medication differently, and there are psycho-social considerations, including activities, relationships, working, parenting, and caregiving.

“Sometimes there's a lot of burnout in patients because they're still performing a lot of their caregiving roles while also having Parkinson's disease,” added Lidstone.

If women and men of any age develop a tremor, Lidstone says it’s important to have it checked by a doctor. Women experiencing persistent mood symptoms, pain, fatigue, slowness, or changes in mobility that are slowly getting worse over time should also see a doctor. “It’s important to listen to your body and get checked out if you’re concerned,” she said.