6 Tips for getting involved in advocacy for women living with Parkinson’s disease
We need to raise our global voices to support women with Parkinson’s. In this month’s blog we speak with Richelle Flanagan, an amazing mom, dietician and Parkinson advocate and we pick her brain on what we need to do now and what we need to do better.
Richelle Flanagan
“Rather, ten times, die in the surf, heralding the way to a new world, than stand idly on the shore.”
Florence Nightingale
Florence Nightingale
In our paper- “Unmet Needs of Women Living with Parkinson's Disease: Gaps and Controversies,” by Drs. Subramanian, Keener, Mathur, Moro, Oosterbahn and myself, we highlight the importance of advocacy to improve awareness of the specific treatment, management and research needs of women with PD. We are asking everyone to lend your standing to the cause and take action to change health care for PD women globally. Here are some things we can do to pave the path forward:
1. Increase awareness in the community to improve the recognition of PD in women and the intersection of other underrepresented groups (ethnic groups, LGBTQ)
We need to change the stereotypical image of PD only affecting older white men. This perception has been recently documented by a survey of public knowledge where the most frequently mentioned group nominated as more likely to suffer from PD was: elderly men.
JAMA Neurology article by Armstrong and Okun about changing the image of Parkinson’s disease.
The reality is that atleast 40% of people in the Western world who are living with Parkinson's are women. In some Asian countries the prevalence of PD has been reported as higher in women.
Very little is known about the experience of the sexual and gender minority groups such as women in the lesbian, gay, bisexual, transsexual, and queer (LGBTQ) intersectional overlap arenas. The prevalence remains unknown, and this may be different in these communities due to variations in potential risk factors for disease such as smoking and use of gender-affirming hormones.
Women and minorities receive neurologist care less often than white men, so it is essential that we change the current image.
We need all stakeholders in PD – clinicians, nurses, health care
professionals, researchers, PD associations, international brain and
neurological organizations to transition to changing their imagery to
reflect the worldwide reality .
2. Educate Health Care Professionals on the
importance of referral (of women) to a movement
disorders specialist.
For women, there is a delay in obtaining both an accurate diagnosis of PD and also a referral to a neurologist or movement disorder specialist. Clinical differences in presentation are not entirely responsible for delays in diagnosis. Some factors lie with women themselves, such as a decreased tendency to disclose or to emphasize bothersome symptoms during medical assessments. Perceptions by physicians that PD is more common in men may also contribute to delays. These inequities are further magnified in marginalized communities within countries where traditionally underserved minorities are more likely to have a missed or delayed diagnosis.
We need all HCP’s to receive undergraduate and postgraduate education on the sex and gender differences in PD and the importance of knowing the difference in presentation of PD in women soas to acheive a diagnosis and referral to a neurologist or ideally a movement disorder specialist— sooner rather than later.
3. Educate providers on how to make an earlier
diagnosis, customize assessments of burdensome
symptoms, and address needs (for women).
We highlight the many differences in both motor and non-motor symptoms between women and men. A prospective study showed women to develop a higher propensity to for non-motor PD fluctuations within 4 years of diagnosis when compared to men. Women also have an increased risk of developing dyskinesias compared to men, likely due to differences in levodopa metabolism and lower body weight. Women have more mood disturbances such as anxiety and depression, more sleep disorders, more fatigue, and more apathy. Restless legs, pain, and facial masking are also more common and more severe in women.
We need all HCP’s to see the person with PD through the sex and gender lens so as to tailor their treatment to that persons specific needs be they be binary or non-binary.
4. Increase awareness of hormonal stages in the lives of PD women
Care for women with PD must include acknowledgment of their unique hormonal life stages and how these stages can impact their disease. Women often report worsening of motor symptoms in the premenstrual phase. In fact, an advocate-driven survey of 200 women with PD corroborated this phenomenon. The decrease in premenstrual estrogen is likely responsible for this effect, and there are conflicting reports of the benefit from taking extra levodopa during the week prior to menstruation. Women with PD may also report pre-menopausal worsening of symptoms, again possibly due to a decrease in estrogen. The question arises whether HRT could be beneficial in treating PD motor fluctuations during peri-menopause and post-menopause. These areas are largely unexplored.
We need treatment algorithms based upon expert opinion and further research on the impact of hormones on PD across life stages— spanning from those women who are newly diagnosed to juvenile- onset to late-onset PD.
5. Enhance global perspectives of PD women’s
issues across the world.
Given the millions of women affected by PD worldwide and the known differences in this disease’s manifestations, and the effects between genders— remarkably little has been done to understand those differences or to tailor management . Similarly, little is known about the geographical differences in the onset, presentation and treatment of women with PD on the global stage. Women need guidance on culturally sensitive wellness and they need self-care strategies that are customized to their situation.
We need PD associations especially in the first world countries to help raise the voices of women who may not have access to a strong network or may be living in a low income country. We need support through language translation of materials for educating HCP’s.
6. Connect more women with PD to each other.
Last but definitely not least, we need to help raise the voices of women with PD by fostering connections and networks through which women can gain confidence— this will help them to make their needs known. Women with PD need to be educated and empowered on how to communicate their symptoms and needs, how to get engaged in research, how to get organized as a community, and how support one another. The voices of women living with PD must be amplified to catalyze real change. Their voices must synchronize to represent the heterogeneity of this progressive disease.
There are already many support groups for women around the world such as the Women’s Parkinson’s Project, Con-P, Twitchy Woman, and others. They have been galvanized by this recent paper to unite a worldwide alliance of Women PD groups for the upcoming International Women’s Day on the 8th of March and to subsequently come together for World Parkinson’s Day on 11 April . If you have a support group already or are looking for one or want to set one up in your country and wish to get involved, please contact one of these groups and we can connect you.
“I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me.”- Maya Angelou
To read more books and articles by Michael S. Okun MD check on Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonsFromTheBedside
He also serves as the Medical Advisor for the Parkinson’s Foundation.
To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.
The blog artist is Jonny Acheson.