The 15 Things Women Living with Parkinson's Should Know
Inspired by our recent paper on “Unmet Needs of Women Living with Parkinson's Disease: Gaps and Controversies” that I wrote with Dr. Keener, Dr. Moro and three additional women who are health care providers living with PD - Dr. Oosterbahn, Dr. Mathur and Richelle Flanagan RD.
Get Educated and Empowered
1. As a woman you are at risk and can be diagnosed with Parkinson’s disease – it is less common in women but certainly can happen and even in young women it is more common than you may think.
2. Knowledge is Power: Get educated about Parkinson’s disease – the more educated you are, the more empowered you can feel. It is important to seek your education from vetted resources such as the Parkinson’s Foundation, the MJ Fox Foundation, the PMDalliance, and the Davis Phinney Foundation.
3. Parkinson’s disease has non-motor manifestations that can affect your quality of life – things like bladder and pelvic floor issues, constipation, sexual dysfunction and other issues can emerge. If you experience these challenges it’s recommended that you seek care from a pelvic floor specialist, gastroenterologist, or licensed sex therapist who understands Parkinson’s.
4. Parkinson’s disease has mental health manifestations – that can tremendously impact your quality of life; especially common are anxiety, depression, apathy, sleep dysfunction. If you experience these challenges it’s recommended that you seek care from neuropsychologist or neuropsychiatrist, and speak to you doctor about how to best address you sleep challenges.
5. The hormonal cycle can affect your symptoms - some women report worsening of their Parkinson’s disease symptoms around the week before menses or as they transition into menopause. If you experience this, please speak to your doctor.
Seek out Subspecialized and Personalized Care
6. Get the help you need from the experts – evaluations from a movement disorders neurologist at certain time points in your disease course can be very helpful. At diagnosis to get on the right path to success and perhaps yearly to check ins. Other key points for women may include pre-pregnancy counseling, during menstrual exacerbations and in the pre-menopausal time period.
7. Prepare well for your appointments and take an advocate – doctors often have limited time with each patient so to make the best use of your time, write down your main complaints or things you want to make sure to address, bring in your pill bottles, write down what refills are needed, have your other providers’ names handy. Bring in your advocate to be an extra pair of eyes and ears and have them take notes. Read the after- visit summary paperwork and make sure you understand the plan of care.
8. Find a provider with whom you have a good rapport – You should feel seen and heard. You should feel that you can be open about your symptoms and your questions. You should feel that you can trust them. The doctor-patient relationship is a sacred one. If you are not getting what you need, see if your clinic has a social worker you can speak to about your concerns, and if you still feeling that things are not “right”, you may wish to seek care at another facility.
9. Engage other providers outside of just your doctor – Make sure you have a well-rounded care team potentially including physical therapists, speech language pathologist, occupation therapists, yoga teachers, personal trainers, dietitians, psychologists, social workers, spiritual leaders and others. We encourage you to have more than a doctor.
Give yourself permission to make yourself a priority
10. Take care of yourself- you are very important and no less important than anyone else in your life. It is hard for women to take the time they need to provide themselves love and nourishment. You need to take care of yourself before you take care of anyone else in your life (remember the oxygen mask on the plane analogy; put it on yourself first).
11. Wellness is important- find proactive things that you can do for yourself every day and focus on activities that make you “feel better”. Think about incorporating exercise and mind-body strategies like yoga or mindfulness. What do you like to do? What brings you joy and meaning? Find ways to increase these in your life. Realize that sleep, hydration and healthy diet can all potentially make you feel better. Bone health is also important especially in women.
Find your tribe
12. You will do better if you have an advocate, and this may be someone other than your spouse – think about who supports you and who you can engage as part of your advocacy team. Who in your life is your biggest cheerleader? It may be your sister or your best friend. Bring them to your appointments and include them in regular discussions about how you are feeling. Ask them to help you document your symptoms, so you can communicate more effectively with your providers.
13. You will do better if you have a tribe – social connection in Parkinson’s disease is huge. Surrounding yourself with a group of friends who you can feel connected to outside your home will likely be important. Planning social activities with these people will also likely be important. Laughing, playing, relaxing, sharing your stories with others have all been reported as beneficial for women living with Parkinson’s.
14. Joining a support group can be tremendously helpful especially a support group which includes other women. Women living with Parkinson’s disease have unique needs and finding support from each other even through virtual modalities can be very helpful. There are models for women support groups: these include mentors or pairs who perform regular check in’s. (Women’s Parkinson’s Project, Twitchy woman, Con P de Parkinson are three examples we are aware of the last one is for spanish speaking WwP-en espanol).
Get involved
15. Participating in advocacy and research can be very empowering and give women with PD a tremendous sense of purpose. Your voice is important and representation matters. To date, most clinical trials and hence treatment has focused on white, affluent, older males. This focus needs to change.
Indu Subramanian, MD is clinical professor of neurology at UCLA and director of the SW PADRECC at the Veterans Affairs. She has attended/presented at past WPC Congresses. Dr. Subramanian will be speaking at the WPC 2023 Congress in Barcelona. View the Scientific Program here.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®