Ok so there's not that many words starting with X, but two X chromosomes make up the female sex, so I will use this post to write a little something about women and PD.
After only a couple of weeks of being on meds, I was so disappointed to feel that I already needed to increase my dose as they felt less effective. My neurologist had told me that I should be able to get symptom relief and feel much better on the dose I was prescribed for a long time. Yet, I had no choice but to increase the dose to get relief after such a short time. This happened a couple of times and it made me really worried. Was my disease particularly aggressive? Progressing faster than normal? What was going to happen, how long could this go on before I had reached a maximum amount of meds?
By coincidence, I came across a post somewhere about how the menstrual cycle could affect the symptoms and the effectiveness of medicines in PD. Wow... I looked back at the last few months and saw a clear pattern. The week before my period, I felt that my meds were less effective. I started investigating it further and found more information supporting this theory. It made me wonder why no doctor mentioned this. Probably because they had no idea...
Like with so many other health issues, women are underrepresented in Parkinson's research. And while more men than women get PD, women report different symptoms, differences in progression, responses to meds, and different challenges living with PD. To mention a few examples, women often face longer times between symptom onset and diagnosis; they are also less likely to receive specialist care and DBS surgery and more likely to experience depression, anxiety, and other non-motor symptoms. Throw menstrual cycles, pregnancy, breastfeeding, and menopause into the mix, and you can see why more attention is needed to deal with the unmet needs of women living with PD.
A group of women with PD recently started The Women’s Parkinson’s Project and published a paper on the subject, highlighting some of the knowledge, gaps, and possible strategies to improve the lives of women with PD.
When Laura Russel, a photographer and book artist, was diagnosed, she decided to make a book featuring 26 women living with PD (myself included, yay!) to raise awareness and show Parkinson's disease from a different angle than the old man with a cane and trembling hands. All gross proceeds from selling this deluxe limited-edition artist book were donated to organizations supporting women with Parkinson’s Disease.
There seems to be a link between estrogen levels and PD, both in terms of symptoms and the risk of developing PD in the first place. This could explain why more men than women get PD, and also why our symptoms often fluctuate with our cycle. But more research is needed on this topic to understand it fully.
Looking back at the years before my diagnosis, I think some of my very first symptoms presented themselves during my last pregnancy. I don't know what that means, but I still find it interesting. As PDs is most common in people over 65 there is obviously not that much information about PD during pregnancy. But a very brave, strong woman I was lucky to meet earlier this year is trying to change that. Annelien Oosterbaan is a 38 year old gynaecologist and mother of four with PD. She had her last baby after her diagnosis while researching pregnancy and Parkinson's.
Annelien is such an inspiration, and I cannot even imagine going through a pregnancy with this disease. Here she is when we met up in Rotterdam. You can read more about Annelien and listen to her talk about the subject in the Parkinson's Life podcast here.
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