Did you know women experience Parkinson’s disease differently than men? Interestingly, this fact has only begun to impact the understanding of PD.

As with many areas of medicine, women are severely underrepresented in research and clinical trials, leading to misdiagnosis, incongruent treatment plans, and a lack of support as their Parkinson’s diagnosis progresses.

We engaged with three women from the PCLA community to explore their unique experiences with Parkinson’s disease. Their insights, plus data from a recent study titled “Unmet Needs of Women Living with Parkinson’s Disease: Gaps and Controversies” (Subramanian et al. 2022), paint a picture of the unique challenges women face with PD.

By continuing to advocate for women and education, there is hope to create an actionable path forward and ensure women receive critical care early in their Parkinson’s diagnosis.

Personal Stories from Women in the PCLA Community

Angela Neff

Angela Neff was diagnosed with Parkinson’s disease four years ago after discovering that her left hand wasn’t receiving movement cues from her brain. “It felt like my hand just wasn’t responding to my brain,” Angela said. She was also experiencing a frozen shoulder, a symptom more common to women that she wasn’t aware was even related to Parkinson’s disease.

These symptoms and a lack of swinging in her left arm while walking (another indicator of PD) led to a quick diagnosis and a subsequent restructuring of Angela’s daily life.

What struck Angela about the initial phases of her diagnosis was the lack of resources. “I felt like I was expected to figure things out for myself. I would ask for studies to participate in, research to read up on, and it seemed like my doctors expected me to do all the work on my own.”

She felt grateful to meet with an MDS (a majority of women are not referred to an MDS, a critical part of the PD care team) but ultimately found the experience unhelpful.

“It’s been clear to me from the beginning that I’m largely on my own,” said Angela, who now facilitates a women’s support group for PCLA. This experience has illuminated the prevailing themes of women’s struggles with PD.

“Anxiety and depression are huge for women. The silver lining is that Zoom has allowed for a lot more women to connect in the last several years,” explained Angela. “With Facebook and Zoom, we’re able to really support and mentor one another. It’s a very healthy environment, and we’re all about educating each other.”

Jennifer Parkinson

Jennifer Parkinson was 32 years old when she was diagnosed with Parkinson’s disease. “I was only one of three people to be diagnosed that young at the time,” Jennifer remembers.

She initially knew something was off when she began experiencing tremors in her hand and extreme fatigue. Jennifer had just given birth to her second child six weeks prior, and her doctors initially dismissed her fatigue as a side effect of being a new parent.

“I was trying to get the doctor to understand the difference between being tired and having extreme fatigue,” Jennifer said. She was also a registered nurse and was aware of how women’s symptoms were often misrepresented in medicine.

As her tremors worsened and her handwriting deteriorated, Jennifer sought a diagnosis from over ten specialists. It took a year and a half to finally receive a YOPD diagnosis.

“They basically gave me a pill and said, ‘See you in six months,’” recalls Jennifer, “I wasn’t referred to anything, and the town I lived in at the time had only one support group in the tri-state area.” To complicate matters, the support group consisted of people in their sixties and above, which Jennifer found isolating as a person with YOPD.

“Most of the resources available at that time were geared towards older people and talked about hospice and assisted living,” said Jennifer. “If you’re in your 30s and 40s, raising children, it’s the last thing you want to be discussing.”

A year after her diagnosis, Jennifer moved from Kentucky to California, where she has established a network of care and support over the past 17 years. She noticed a vast improvement in her symptoms after starting boxing classes in 2009. Today, Jennifer has adopted an active lifestyle incorporating boxing, yoga, climbing, and advocacy for Parkinson’s education.

Pat Young

In 2007, Pat Young was 71 years old and pursuing her bachelor’s degree in Art History at UCLA when she began experiencing extreme fatigue. She was ultimately diagnosed with Parkinson’s disease.

“I had my usual high energy for my morning classes, but would experience sudden extreme fatigue while at lunch,” explained Pat, “I’d become completely overwhelmed even thinking about having to walk across the campus to my afternoon classes.”

To complicate things, her handwriting was rapidly deteriorating, and when she went to her doctor, he immediately noted that her arms weren’t swinging when she walked.  Despite her diagnosis, she graduated in 2009, proudly traversing the stage to receive her diploma without losing her balance.

Over the past sixteen years, she’s grateful to have received excellent treatment and support, especially during health episodes with her husband and sons. She continues to be the primary caregiver for her youngest son, handicapped with COPD.

“For two or three years, I was the primary care partner for my husband who suffered from Peripheral Neuropathy, which rendered him unable to walk,” said Pat. The mental and emotional impact of his forced retirement ultimately led to dementia. During this time, they also lost a son to cancer.

“I flew to Utah every weekend near the end of our son’s life and coordinated everything by myself. As we all know, stress takes its toll on Parkinson’s, and certainly impacted all my symptoms. My meds were taken if and when I remembered them, insomnia worsened. When you’re going through it, you just don’t really think about it.”

Pat is an avid painter and sculptor.  Although she has lost the ability to use a hammer and  chisel due to an arthritic right shoulder, she’s now painting with her left hand. Her maxim: “An artist will always make art!” propels her forward.

Her optimism and zest for life have influenced many members of the various Parkinson Support Groups she attends. As her disease progresses, she tries to meet every new challenge boldly,  moving first to a cane, then a walker, then relinquishing the car keys, but moving forward every day.

“I have outstanding doctors, an excellent support system, and have stayed active from the beginning. I will never let Parkinson’s define me,” said Pat.

Stats on Women with PD

Parkinson’s is commonly known as a disease specific to elderly white men. This is likely due to its representation in reporting and media, which often pairs Parkinson’s disease with this imagery.

There is some truth to this; studies have found PD is 1.5 times more common for men than women However, unintended consequences of this stereotype have only further alienated women from receiving a timely diagnosis and adequate treatment.

For example, women are more likely to experience delays in receiving an accurate PD diagnosis and referrals to movement disorder specialists. The delays may be related to the clinical differences in how symptoms manifest between men and women, but other factors are likely at play, too.

Women are generally less inclined to disclose symptoms or discomforts during medical check-ups. Plus, perceptions of the medical community that PD is specific to men may also contribute to delays. The issues are further compounded for minority groups and women in the LGBTQ+ community where very little research has been conducted.

How PD Symptoms Manifest with Women Vs Men

In general, women experience PD differently than men in a few key ways:

• Women exhibit different non-motor and motor symptoms, with tremors as an early indicator
• Women experience a more prolonged progression of PD
• Women receive less social and emotional support
• Women are less likely to be diagnosed with PD

Cultural standards also lead to a very different lived experience of PD between men and women. Research shows that women are more likely to prioritize PD symptoms directly impacting their ability to maintain strong social relationships. Also women identify the inability to complete domestic duties as a common stressor.

Common PD Symptoms in Women

The predominant symptoms of PD differ significantly between men and women. In general, women experience more common occurrences of these symptoms:

• Tremors
• Facial masking
• Levodopa-induced dyskinesia (potentially due to improper medication that is standardized to the average height and weight of men)
• Restless leg syndrome
• Mood and sleep disturbances
• Anxiety and depression
• Fatigue and apathy
• Pain
• Urogenital (pelvic floor) symptoms
• Psychological distress
• Negative or destructive self-image
• Impaired sexual intimacy

Conversely, men are more likely to experience more rapid disease progression, hallucinations, cognitive impairment, GI issues, and sexual dysfunction.

While it’s not known precisely why women and men experience Parkinson’s disease so differently, research indicates that hormonal differences, particularly the prevalence of estrogen, impact susceptibility to PD, severity of symptoms, and disease progression.

In general, women with PD experience a fluctuation in their symptoms as they experience different hormonal phases of life between pregnancy, perimenopause, and postmenopause. Additionally, women report worsening symptoms during their premenstrual phase, which is thought to result from decreased estrogen production.

However, premenstrual symptoms are characteristic of women with YOPD (Young Onset Parkinson’s Disease). Approximately 5% of women are diagnosed with Parkinson’s before age 40, widening the barrier to research.

These changes demand a careful approach to medication and treatment of symptoms, with appropriate adjustments to match these shifts in estrogen production.

The Impact of Societal Norms on Women with PD

Women are more apt to take on the role of caretaker, leading to a very different lived experience of PD than men. Overall, women tend to provide more hours of care and are more involved in day-to-day tasks than men. This encompasses childrearing, house duties, and meal preparation, to name a few.

The pressures of performing these duties while managing PD symptoms create a unique cocktail conducive to anxiety and depression. It’s not surprising, then, that women are more likely to experience these symptoms and report that they feel a general lack of support living with PD.

Further, the traditional role of women as caretakers has an interesting impact on the statistics between men and women receiving care. Women are twice as likely to require a paid caregiver, and because women have a higher life expectancy than men, they have a greater number of years requiring caregiving outside of their spouse.

These statistics should be considered when planning long-term care in women with PD.

The Future of Treatment for Women with PD

Addressing women’s Parkinson’s needs is a complex undertaking requiring consideration of several factors, with research, education, and advocacy being the main avenues.

Advancing Research for Women with PD

Women are generally underrepresented in clinical trials, further creating a gap in information. Consider that Angela has attempted to participate in studies on more than one occasion, only to find that there’s been room for only male participants. PD is the fastest-growing and second-largest neurological condition in the world, making research equality across genders especially important.

To learn more about how you can get involved with research, check out these resources for Parkinson’s research, as well as our recent LTP event with Dr. Bronstein on The Latest in PD Research 2023.

Educating Healthcare Professionals

Changing perceptions of Parkinson’s disease will require education, especially for medical professionals. In spreading awareness of women’s unique PD symptoms, doctors may be able to identify PD earlier and ensure that women are receiving the necessary treatment to create a higher quality of living.

Promoting Advocacy

Receiving substantial care will require self-advocacy from women with Parkinson’s disease. Jennifer has found this to be a common thread across many women in her support groups — they’re simply not speaking up to their neurologists, particularly about the impact of medication on their symptoms during their menstrual cycle.

“It’s important that women speak up and tell their toy and healthcare professionals that they’re having these issues,” said Jennifer, “The basic first step is to have women prioritize themselves.”

For more information about how to advocate for yourself or a loved one, check out our blog on How to Advocate During Parkinson’s Awareness Month.

Contact PCLA for Further Info

PCLA is passionate about connecting women with support groups and resources through every stage of their Parkinson’s journey. Our Women With Parkinson’s virtual support group is free and meets every first and third Tuesday of the month.

Don’t hesitate to contact us for more information — we’re your allies in all things support and advocacy!