[Webinar Recording] Women and Parkinson’s

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Parkinson’s can affect nearly every system in your body and may touch nearly every aspect of your life. So, it’s no surprise that understanding sex and gender differences and how they impact Parkinson’s is an important consideration for living well.

In this webinar, panelists Kat Hill, Karen Jaffe, Soania Mathur, and Nabila Dahodwala discuss:

  • Hormonal life stages and Parkinson’s (including premenstrual, pregnancy, and pre-or post-menopausal)
  • Hormone therapies (particularly estrogen and progesterone) and Parkinson’s 
  • Motor and non-motor symptoms in women with Parkinson’s
  • Psychosocial and mental health issues in women with Parkinson’s 
  • Relationships and social roles for women with Parkinson’s 
  • Care team considerations and communication 

To access the recording, click here.

To download the audio, click here.

To download the transcript, click here.

Show Notes

  • Parkinson’s is unique for each individual, and this holds true when looking at groups of people, such as women. However, studies have shown that there tend to be some trends related to symptoms when comparing men and women. Women tend to be more tremor dominant. They also may have more facial masking, restless leg syndrome, dyskinesias from taking levodopa, and more pain. The non-motor symptoms of Parkinson’s, especially mood-related symptoms, tend to affect women to a higher degree than men. In contrast, women tend to have less disease progression and fewer cognitive symptoms such as hallucinations and delusions.
  • Hormonal changes can impact womens’ experience of Parkinson’s in a variety of ways. First, it may lead to a later diagnosis or referral to a movement disorder specialist because often women themselves and/or providers may attribute initial non-motor symptoms of Parkinson’s to times of fluctuating hormones such as menstrual cycles, perimenopause, or menopause. Changes in hormones may also impact the presentation of symptoms.
  • Your provider may not bring up your period, perimenopause, or menopause in appointments, so it’s important to be your own advocate and discuss this. To be better prepared for your appointments, track your symptoms and the effectiveness of your medications while noting any hormonal changes, so your doctor can assess the complete nature of your situation.
  • Research on women and Parkinson’s is limited, so there are still a lot of unknowns, but you can do your part to advance research specifically focused on women and Parkinson’s by joining a study, completing questionnaires when you receive them, and/or donating to research.
  • Having a multi-disciplinary team to manage your Parkinson’s is very important, and an OB/GYN may be a helpful addition. However, when using a multi-disciplinary team, recognize that you are responsible for being the common denominator and effectively sharing information from one specialist with another. As Dr. Dahodwala says, it can be helpful to use different specialists within the same care system, as it is often easier for them to share records.

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about the speakers

Soania Mathur, MD

Soania Mathur is a family physician living outside of Toronto, Ontario, who resigned from her clinical practice twelve years following her diagnosis of young-onset Parkinson’s at age 27. Now she is a dedicated speaker, writer, educator, and Parkinson’s advocate. Dr. Mathur is an active speaker in Canada and the US at patient-directed conferences and also serves as a resource for education projects. She works with The Michael J. Fox Foundation for Parkinson’s Research and serves as Co-Chair of their Patient Council. She is a member of The Brian Grant Foundation Advisory Board, the Medical Advisory Board for Parkinson Canada, and she works with Parkinson’s Movement UK on North American initiatives. Dr. Mathur has valued her involvement with World Parkinson Congress as both a speaker and committee member.

Locally she is a member of the Board of Directors for the Lakeridge Health Foundation. She has authored a number of published papers and online pieces and is a regular contributor to Huffington Post Blog. She is the founder of Designing A Cure Inc., which was initially created to raise funds directed towards research and awareness of Parkinson’s disease and now serves as a platform to educate and inspire those living with this disease to take charge of their lives and to live well with Parkinson’s. Dr. Mathur has a special interest in helping educate the youngest affected by the stress of Parkinson’s. To help facilitate dialogue between children and their loved ones, she has authored two books: My Grandpa’s Shaky Hands and Shaky Hands – A Kid’s Guide to Parkinson’s Disease.

Karen JaffeKaren Jaffe, MD

Karen Jaffe is a retired OB/GYN and a Parkinson’s advocate. She was diagnosed with Parkinson’s at the age of 48. She is a member of the Michael J. Fox Foundation’s Patient Advisory Council and the Brain Health Initiative at the CWRU-SOM in Cleveland, Ohio. She and her husband, Marc, founded Shaking With Laughter, a nonprofit foundation that has raised one million dollars for Parkinson’s research.

Today she spends much of her time at InMotion. InMotion is a center for Parkinson’s and other movement disorders that strengthens lives through a holistic approach of education, exercise, and healing arts. She was the recipient of the Red Cross Heroes award, the Irene Zehman award for Volunteerism, the World Parkinson’s Program International Parkinson’s Community Service Award, and the University Hospital Neurological Institute Champions for Parkinson’s award. 

Nabiła Dahodwala, MDS

Nabila Dahodwala, is an Associate Professor of Neurology at the University of Pennsylvania. She is also a Senior Fellow at the Leonard Davis Institute of Health Economics, Institute of Aging fellow, and Director of the Parkinson Foundation Center of Excellence at Penn. Dr. Dahodwala’s research interests involve access to care; disease prevention and health promotion; disparities and health equity; and global health and risk communication. She leads a number of projects that study patient, physician, and health system-level barriers to high-quality care for individuals with neurodegenerative diseases. She has received research funding from the NIH, VA, Michael J Fox Foundation, Parkinson Foundation, and the Parkinson Council. She is also the site investigator for numerous industry-sponsored clinical trials testing new therapeutics for Parkinson’s disease and Essential Tremor. She serves as the chair of the American Neurological Association’s Health Services Research Special Interest Group and is a member of the International Parkinson and Movement Disorders Society’s Integrated Care Taskforce, the Parkinson Foundation Parkinson Outcomes Project Steering Committee, and the Michael J Fox Foundation’s Fox Insight Executive Steering Committee. In addition to her research and clinical activities, Dr. Dahodwala is the Movement Disorders Fellowship Director at the University of Pennsylvania and directs the Patient-Oriented Research Curriculum for the neurology residents.

Kat Hill, RN, NP

Kat Hill is a Davis Phinney Foundation Ambassador and a retired midwife who now centers her work around health and wellness. She was diagnosed with Parkinson’s at the age of 48 and later co-founded a young-onset Parkinson’s support group with the help of an Oregon-state resource program. She has been involved in speaking and advocacy for many years. Kat believes that every day is a gift and that we can learn to live with joy and gratitude, even with challenges.

 

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