"Navigating Parkinson's as a Woman: Finding Your Voice and Support"
Women Diagnosed with Parkinson's Disease
In 2002, I was diagnosed with Parkinson's, a journey that started with two long years of medical disagreements about my symptoms. I felt lost, particularly because my symptoms were primarily non-motor at the beginning.
A visiting doctor, who quietly approached me after I was told it wasn't Parkinson's, changed everything. That diligent healthcare professional, realizing the truth that others had missed, set me on the path to proper diagnosis and treatment.
Women Face Unique Challenges in Medical Settings
Living with Parkinson's amplifies feelings of aging, and it's unfair to say that men don't share this struggle. However, in societies where female beauty is emphasized, appearance can become a concern, especially when facial masking or expression changes occur.
From early childhood, women are expected to smile and be amicable. When our facial expressions don't conform to societal expectations, it can lead to misunderstandings and unintended reactions from others, even doctors who may believe we're depressed instead of presenting symptoms specific to Parkinson's.
The Word "Complain" Matters
Women should demand that their doctors remove the word 'complained' from their medical records, as research shows that this word carries significant implications for women. While doctors may initially dismiss this request, they should shift their approach and, in some cases, inform their students to do the same.
The doctors I've worked with have been understanding, exchanging 'complained' for phrases like 'explained,' 'described,' 'discussed,' or 'emphasized.' At the very least, this change calls attention to unconscious biases.
As women with Parkinson's, it's essential to trust our instincts, observe if we're being attended to, and maintain and strengthen our voices. This can be achieved through speech therapy or utilizing resources designed to assist with this. Prioritizing the issues most important to us is crucial, as well.
You're Not Alone
Originally a preventive medicine researcher, I didn't find it hard to locate information about Parkinson's. Yet, discovering resources for women navigating the disease was a challenge.
Other female Parkinson's patients have emerged as valuable resources, offering understanding, empathy, and collaboration, which instills a sense of camaraderie and shared experience.
Accessing resources that focus more specifically on women and Parkinson's remains challenging. Online platforms and interactive discussions about women's issues would make a difference.
Being Heard by Doctors
Kathleen Reardon suggests phrases to communicate effectively with healthcare professionals:
- "This is key" - This phrase is a great way to emphasize a symptom that has become problematic.
- "That was important for me to tell you, but this is also critical" - This cues the doctor to pay closer attention.
- "This is what I really want you to hear" - If the doctor doesn't respond to your initial query, use this phrase to repeat or rephrase your message concisely and accurately.
- "I'd like to repeat what you told me earlier because we skimmed over it" - It's important to never leave a visit without a thorough understanding of the discussion.
Resources for Women with Parkinson's
Finding support tailored to women with Parkinson's is possible through several organizations and initiatives:
- Davis Phinney Foundation - Offers comprehensive resources for Parkinson's, which include exercise tips, educational materials, and support for care partners.
- Twitchy Woman - Provides free programs for women with Parkinson's, focusing on their unique experiences and challenges.
- Parkinson's Resource Organization (PRO) - Offers emotional and educational support through support groups and a resource directory.
- Parkinson's Pointe - A non-profit wellness center offering a range of support, including exercise classes and peer mentorship programs.
Moreover, platforms such as the Parkinson's Today Blog offer the latest updates on Parkinson's research, advice for daily living, and resources for financial planning.
Organizations like the Healthy Parkinson’s Communities Initiative aim to engage community leaders and develop initiatives to support more women with Parkinson's, fostering a sense of community and camaraderie in the journey towards living well with the disease.
Sources
First published by Parkinson's Life
Kathleen Reardon, formerly a professor at the University of Southern California, shares her insights as a woman diagnosed with Parkinson's, and now continues her work in Ireland as a visiting professor and distinguished research scholar.
- Navigating neurological disorders, such as Parkinson's, requires a strong focus on women's health and health-and-wellness, as women with these conditions often face unique medical-conditions that are frequently overlooked.
- In the pursuit of health-and-wellness, women with neurological disorders like Parkinson's can seek support from various organizations, such as the Davis Phinney Foundation, Twitchy Woman, Parkinson's Resource Organization (PRO), and Parkinson's Pointe, which are dedicated to providing resources tailored specifically to women's needs and experiences.
