Men and women experience Parkinson’s at different rates and in many different ways, including symptom presentation, sleep problems, cognitive impact, responses to surgery, medication side effects, emotional health, the care partner experience and more.
We recently hosted a webinar about women and Parkinson’s with Dr. Michelle Fullard. In this webinar, we discussed reasons why rates of diagnosis and symptom presentation are different, as well as delving into the literature about the unique challenges that women with Parkinson’s face.
To get access to the recording of the webinar, click here.Here’s the link to Dr. Fullard’s slides. Here’s the link to a transcription of the webinar.
One of the difficult parts of discussing a topic like women and Parkinson’s is that it can feel like we end up with more questions than answers. Without very much conclusive research on the topic, studies can be contradictory or simply non-existent. The only way to fill this gap is to be part of the solution and participate in clinical trials and research studies. If you’re hesitant or confused about how clinical research is conducted, click here to get the answers to some common questions.
There were several items addressed during the webinar that we weren’t able to dig as deeply into as we would have liked; so, we’re going to shed some more light on a few questions that we think deserve more time.
Rate of prevalence in men vs. women
It is widely accepted that the number of men diagnosed with Parkinson’s is about twice that of women. However, it is less clear why such an effect exists. A variety of explanations have been offered, but it is most likely due to a combination of genetic and environmental factors. Some environmental factors that are known to be linked to a higher rate of Parkinson’s are head trauma and pesticide/chemical toxin exposure. Due to certain gender roles, men may be exposed to these particular risk factors more often than women are, which would increase their rate of diagnosis.
Several studies have also found that Parkinson’s is linked to the X chromosome. Since men only have one X chromosome, while women have two, this may be part of why Parkinson’s is more common in men. However, as Dr. Fullard discussed, women may be more likely to have an LRKK2 mutation, which indicates higher rates of Parkinson’s. Since there is no one cause of Parkinson’s and both genetic and environmental factors contribute to a Parkinson’s diagnosis, these different findings are not particularly surprising. For some people, genetics may play a greater role in contributing to Parkinson’s, while for others environmental factors are more important.
Another possible reason for lower rates of Parkinson’s in women is the possible neuroprotective nature of estrogen, which we will explore more fully later in this post.
Finally, an important possible explanation for lower rates of women with Parkinson’s is related to healthcare and how women are treated. Lower rates of Parkinson’s diagnosis may be due to implicit bias on the part of healthcare providers – women may have similar rates of Parkinson’s to men but are simply misdiagnosed more frequently or do not see a doctor who could diagnose them. Dr. Fullard discussed that many Parkinson’s symptoms parallel those of menopause, so women may not consult a physician about them or their physician may inadvertently misdiagnose them. In addition, a study found that the time between diagnosis and seeing a movement disorder specialist (MDS) is 61% longer for women than men. This should serve as another reminder to consult your healthcare provider whenever you feel a change in your symptoms or in your daily quality of life. Disclosing any changes you have noticed will help you get better diagnoses and can make sure that you get the most appropriate treatment.
Symptoms, progression and treatment
As Dr. Fullard mentioned, the evidence relating to symptom differences and disease progression is somewhat varied, as Parkinson’s is very individual. Everyone experiences it differently, so you should focus on treatments and a care plan that are tailored to your individual circumstances, but there are some commonalities across women with Parkinson’s.
A 2006 study found that the age of diagnosis was 2.1 years later for women than men, which may be due in part to the healthcare issues outlined above. In addition, 67% of women presented with a tremor, while only 48% of men did, suggesting some symptom differences. A 1998 study also found a difference in symptom presentation; women had a significantly higher rate of dyskinesia than men did. These symptoms are usually indicators of milder forms of Parkinson’s, but women regularly report lower quality of life than men do. This may be due in part to women’s care partner experience, which we will address more fully later on in this post.
Women with Parkinson’s experience higher rates of depression than men do, and there may also be some gender differences in cognitive symptoms. Women have issues with visuospatial cognition, while men have been shown to have cognitive difficulties with activities of daily living (ADL), verbal fluency and recognizing facial emotion. The decline of cognition may be related to estrogen, as we will explore further later on. In addition, men experience higher rates of REM Sleep Behavior Disorder than women do. Women also report greater symptom fluctuation than men do.
Variation in treatment
Dr. Fullard also explained that women receive different treatment for their Parkinson’s than men do. She discussed the fact that although men and women express the same levels of interest in receiving Deep Brain Stimulation (DBS) for their Parkinson’s, far fewer women actually get DBS. This relates again to communication with your physician. Be sure that you have information about all possible therapies, and don’t be afraid to explore DBS. Though it was once considered a last resort treatment, it is now used much more commonly for middle-stage Parkinson’s. Don’t hesitate to communicate with your physician and decide the best course of action for your individual Parkinson’s.
The effects of estrogen
As Dr. Fullard described in the webinar, while research into the neuroprotective nature of estrogen is promising, the evidence is still inconclusive. However, some preliminary studies suggest that estrogen may protect the neurons that produce and release dopamine. Another study indicates that estrogen therapy may help with improving motor symptoms, but the sample size of this study was very small.
Since one of the hallmark symptoms of Parkinson’s is below-average dopamine levels, using estrogen as a Parkinson’s therapy may soon be possible. However, there are several caveats. First, not all studies demonstrate that estrogen is actually neuroprotective. Also, even if estrogen does protect dopamine-producing cells and neural pathways in the brain, there are great fluctuations in women’s estrogen levels, depending on age, time of the month and individual genetic components. Therefore, much more research is necessary before estrogen can be widely prescribed for Parkinson’s. However, you can be part of finding that solution by participating in clinical trials. (See the additional resources below for ways to find clinical trials near you that fit your criteria.)
The care partner experience
Dr. Fullard also addressed several differences in how women experience care. Women are traditionally caregivers in their families, whether that means running carpools or making dinners for their families. However, with the onset of Parkinson’s, those seemingly simple tasks can quickly become unmanageable. When women are so focused on caring for others, they often stop caring for themselves, which is extremely detrimental to their quality of life.
So, what steps can you take to make sure that you are receiving adequate care while reducing the disruption of your normal routine?
- Communicate honestly, effectively and regularly. If you don’t share how you’re feeling, what you’re struggling with or your daily victories, no one will know what you’re going through. By being open and honest with the people in your life about what you need from them and what you’re capable of providing, you’ll greatly improve the quality of your relationships and your life. This can also help improve intimacy between you and your partner.
- Don’t hesitate to ask for help. Even if you’re used to taking care of all of the minutiae in your life, there will come a time in your Parkinson’s journey that you’ll need help. Ask your partner to pick up the groceries on the way home, see if your friend or neighbor can take your children to school or simply let some of the little things go.
- Engage in self-care and exercise. If you’re too focused on caring for the other people in your life, you’ll neglect caring for yourself and hurt yourself in the long run. Take time to engage in activities that bring you joy. Exercise daily, meditate, practice yoga, be mindful or keep a journal. Don’t be afraid to ask for time alone to process what you’re experiencing. Remember that it’s okay to not be okay, and you’re still you even if you feel different.
- Ask someone to go with you to your doctor’s appointments. Having another person in the room can help you ask questions about things you do not understand, explain symptoms you may not have noticed or better explain something you’re going through. It can also help you emotionally to have another person who loves you in the room to help you deal with potentially difficult news.
- Build a support system and an effective care team. Make sure that group involves people who can support you emotionally, like friends, family, a therapist or a religious/spiritual leader.
- Find balance in your life. If you’re still working, consider reducing your hours or discussing working remotely to reduce stressors like getting ready in the morning, commuting and dealing with coworkers. Be careful not to overcommit yourself and prioritize what is truly important to you, because you cannot do it all.
- Get engaged in the community to the extent that works for you. Try participating in or starting a women-only Parkinson’s support group, or try a Parkinson’s-specific exercise class near you. It’s okay to give up activities that you don’t feel you have time for, so long as you maintain some degree of regular social interaction to reduce isolation.
Don’t forget to register for our upcoming webinars. We cover a range of topics pertinent to the Parkinson’s community, so be sure to tune in to get more information and have your questions answered by the experts. Plus, in case you can’t make it live, we will provide a recording to everyone who registers.
Cognitive and Psychological Complications in Parkinson’s with Dr. Daniel Weintraub – Wednesday, September 11 at 12 pm PST
The Latest Parkinson’s Research and Clinical Trials with Dr. Drew Kern – Wednesday, October 16 at 12 pm PST
Cognition and How It Intersects with Other Non-Motor Symptoms with Dr. Jennifer G. Goldman – Wednesday, October 30 at 9 am PST
Parkinson’s Nutrition for Living Well Today with Dr. John Eric Duda – Wednesday, November 6 at 12 pm PST
Please email your questions about these topics to firstname.lastname@example.org if you would like them to be addressed during one of the webinars.
Visit our webinar calendar so you can see everything that’s coming up and mark your calendars.