When you think of Parkinson’s disease, you might picture an older man with a visible tremor who stoops when he walks. While those symptoms are real, this common image only tells a small part of the story for the 1.1 million people in the U.S. living with the condition.
As a movement disorder specialist at the University of New Mexico Health Sciences Center, I work with patients who experience the full spectrum of Parkinson’s disease (PD). I’ve learned that PD doesn’t affect everyone in the same way. Women living with this disease face a unique and often underrecognized set of challenges—from the way symptoms appear to the social roles they’re expected to maintain.
Understanding these differences isn’t just a topic for medical journals. It’s a vital part of making sure every patient in New Mexico gets the care they deserve. By better understanding the specific needs of women living with Parkinson’s disease, we can work to close gaps in diagnosis, treatment, and support.
The Challenges of Different Symptoms
One of the biggest hurdles for women living with PD happens even before they’re diagnosed. While PD is slightly more common in males (about 1.5 men are diagnosed for every 1 woman), it is frequently underdiagnosed in females.
Often, men show the classic motor symptoms associated with PD, such as stiffness or shaking, right away. Women can experience a different set of early warning signs that can be more difficult for providers to identify as PD. These can include:
- Mood changes: Ongoing anxiety or depression that is new or unusual
- Sleep disturbances: Difficulty falling or staying asleep or acting out dreams
- Autonomic issues: Irregular bowel habits, urinary frequency, and difficulty regulating body temperature
- Pain and fatigue: General physical discomfort that may not seem related to a brain disorder
Patients and providers can write off early PD symptoms like these as signs of aging or stress. This can lead to a delay in diagnosis, in which women wait months or years longer than men to start treatments that could improve their quality of life.
Related: Read “Functional Neurological Disorders: Giving ‘Invisible’ Conditions a Name”
The Role of Biology and Hormones
We’re still learning about why PD behaves differently in women, and it’s clear biology plays a big role. Research suggests the hormone estrogen may have a protective effect on brain cells. This could explain why women often develop PD later in life than men, who have much less estrogen.
Other evidence suggests that the length of time a woman is exposed to estrogen could influence her risk. While more large-scale studies are needed to confirm these links, this key area of research can help us understand the differences in PD.
Related: Read “Collaborative Research Aims to Crack the Gut-Brain Connection”
Barriers to Advanced Treatment
Even when a PD diagnosis becomes clear, women can face treatment challenges.
Women also often experience more side effects to the medications used to manage PD. While these drugs are effective, women are more likely to see their medications kick in or wear off unpredictably. They’re also at a higher risk of developing dyskinesias, which are involuntary movements caused by long-term medication use.
For example, one of the most effective tools we have to treat advanced PD is deep brain stimulation (DBS). In this procedure, thin wires are placed in the brain to provide mild electrical pulses that can block signals that lead to movement symptoms.
Yet studies show that women are less likely to be offered this treatment, and when they are, it’s much later in their disease than men. The delay isn’t because DBS is less effective for women. Instead, it’s because women’s symptoms (including mood fluctuations and other “invisible” signs) can be misidentified, and aren’t always taken as seriously as the visible tremors seen in men.
The Double Burden of Caretaking
The social realities our patients face influence how they live with PD outside our clinics. In many homes, women are the primary caretakers for their families, often looking after children, grandchildren, spouses, or aging parents. When a woman is diagnosed with PD, those responsibilities don’t go away.
This creates a double burden. Even as her own physical ability declines, a woman living with PD is often still expected to manage the household and care for others. This can lead to:
- Reduced self-care: Women often prioritize the needs of their family over their own physical therapy or doctor’s appointments.
- Isolation: Many women with PD say they can’t ask for help because they’re the ones helping everyone else.
- Financial and travel challenges: It can be hard to find the time or resources to travel long distances for specialty care, especially in a large state like New Mexico.
A Path Forward
At UNM Health Sciences Center, we’re working to break down these barriers so women can access the same high-quality care as men. At the Nene and Jamie Koch Comprehensive Movement Disorder Clinic we provide specialty care that is designed to address the whole person. We don’t just consider a patient’s symptoms; we look at their whole life.
Our multidisciplinary team works to address women’s specific needs, including specialized neurologists, physical, occupational, and speech therapists. We also refer them to specialists when needed such as pelvic floor physical therapists for urinary issues, urogynecologists, and gastroenterologists.
We understand the unique challenges here in New Mexico. By offering this one-stop care environment, we aim to make every visit as impactful as possible, connecting patients with the resources they need while they’re here in the clinic.
Training to Improve Equity
As an academic medical center, our mission goes beyond the patients we see today. We’re also training the next generation of neurologists. Here, our trainees get hands-on experience to help them understand that PD is not a one-size-fits-all condition.
In our clinics, residents and fellows learn through direct experience. They see firsthand how a woman’s PD symptoms could be masked by her social role or written off as anxiety. We teach our trainees to:
- Proactively screen for non-motor signs: Instead of waiting for a patient to mention mood or sleep concerns, we teach trainees to ask about them up front
- Recognize social disparities: We help trainees understand that a patient’s ability to follow a treatment plan is often tied to their responsibilities at home
- Educate the whole family: We encourage trainees to speak with caregivers and family members so they know how to support the patient at home and provide a more accurate history during appointments
By teaching trainees to recognize differences in PD, we’re working toward more equitable and compassionate care for everyone.
Advocacy is Your Best Tool
If you or a loved one is living with PD and feel your concerns aren’t being heard, know you’re not alone. Ask your doctor for a referral to a movement disorder specialist.
At an academic medical center like UNM Health Sciences Center, we have the tools that can help you navigate PD. With the right team, tools, and information, you can live a full, high-quality life with the expert care you deserve.