Objective: To explore the experiences of women with Parkinson’s disease (WwPD) in healthcare access, physical and mental health, relationships, and future planning, identifying unmet needs.

Background: Evidence suggests that Parkinson’s disease (PD) exhibits sex and gender differences; however, women have been underrepresented in PD clinical research, resulting in a limited understanding of the sex- and gender-specific aspects of the disease.

Method: Patient-centered, mixed-methods study using focus. In this study, “women” refers to individuals who identify as women and experience relevant physical, social, or physiological aspects of womanhood. Interviews were transcribed verbatim and analyzed in NVivo 12 using six-step thematic analysis. A codebook was iteratively refined to capture emerging patterns.

Results: Five focus groups were conducted (22 women, age 60.5 years, range: 44–81, disease duration: 6.82 years). We identified two main themes: 1. Physical health and clinical care, and 2. Mental health, social support, and future planning.

Physical health and clinical care: Many participants—particularly with young-onset PD—reported misdiagnosis, dismissal, and inadequate information on gender-specific PD symptoms. Many were initially diagnosed with anxiety, delaying treatment. Menopause and menstrual cycle fluctuations, were frequently mentioned but rarely addressed by healthcare providers, leaving women uncertain whether symptom changes were due to PD or hormonal shifts. Sexual dysfunction was also overlooked, participants mentioned vaginal dryness, pain, and intimacy challenges, often worsened by medication timing. Only some received helpful care and many preferred women providers, believing them to be more attentive. The importance of exercise and nutrition for symptom management was emphasized.

Mental health, social support, and future planning were equally pressing concerns. Participants reported increased anxiety, depression, and self-image struggles, leading to social withdrawal. Concerns about stigma in the workplace led some to hide their diagnosis, limiting career opportunities. Within families, WwPD described increasing dependence on partners and children.

Conclusion: Our findings stress the need for research on women’s health in PD, such as the interactions with hormonal changes, and reinforce the importance of integrating gender-specific approaches into PD care.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/what-women-want-real-life-experiences-of-women-with-parkinsons-disease/