Parkinson’s disease and pregnancy: “There is so much we still don’t know”

Five women share how their experiences of pregnancy were impacted by Parkinson’s, from uncertainty around medication to increased symptom severity – and offer advice to others in the community

Tell us about your initial experiences of pregnancy and Parkinson’s.

Caitlin Nagy, Canada: I was elated to find out that I was pregnant. It was something that I had wanted my whole life, and it was finally happening. But that definitely came with some fears and concerns from me and my husband. I had been diagnosed with Parkinson’s four years prior. I chose to not go on medication prior to getting pregnant because my doctor had advised that there was not enough research around pregnancy and Parkinson’s medication.

Dr Annelien Oosterbaan, Netherlands: I was diagnosed at the end of 2016. I already had three kids before my Parkinson’s diagnosis, but in 2021, I experienced my first pregnancy with the condition. I had already done my own research before deciding to become pregnant. Still, this didn’t really help me or reassure me, since there is so much we still don’t know. It felt risky, not knowing whether my Parkinson’s would become worse. Little information was available on aspects like medication use and breastmilk.

Richelle Flanagan, Ireland: I thought I had Parkinson’s when I was three months pregnant with my daughter. But I had to wait until I had finished breastfeeding my daughter to get a dopamine transporter scan, which confirmed my diagnosis. So, while pregnant, I was in the weird position of not knowing if I had the condition or not. Thankfully, it was an uneventful pregnancy. I was not concerned for myself but rather about how the condition would impact my daughter’s life.

Richelle Flanagan and her daughter.

Dr Soania Mathur, Canada: I was diagnosed with young-onset Parkinson’s when I was 28 and pregnant with my first daughter. I was blessed to have two more daughters in the years that followed. Not surprisingly, there was no consensus to inform me about the risks I needed to be aware of. So, the expected joy of pregnancy was marred by a feeling of uneasiness and a fear of the unknown. I was worried about the effects of the condition and the medications I was taking on the health of my unborn baby.

Ellie Finch Hulme, UK: I was diagnosed at the age of 29, almost 10 years ago. I got married the following year and became pregnant soon after that. Knowing that I had a neurodegenerative condition made me decide to try for a baby sooner rather than later. Thankfully, everything looked pretty normal throughout my pregnancy, and I was well looked after with extra scans and appointments.

Ellie Finch Hulme with her children.

How did pregnancy impact your Parkinson’s symptoms and vice versa?

Soania: I was unsure how my Parkinson’s would respond to the physical and psychological demands of pregnancy. I wasn’t able to find much research on how symptoms are impacted – and the reports I did find were conflicting. Although many women with Parkinson’s had their symptoms return to typical levels after birth, others reported a deterioration in their condition that didn’t improve.

Personally, I found that my symptoms worsened a bit during my pregnancies, primarily because I reduced my medications substantially. But they returned close to baseline once I gave birth. 

Caitlin: My first trimester was tricky. My tremors were in hyper-overdrive – I was shaking all over the place to the point where my friends’ kids would call me ‘the shaky lady’. This was so heartbreaking as a mum: to wonder if my daughter would have to deal with these kinds of comments. In the second trimester, my symptoms were even worse – I lost my energy and had a lot of fatigue and pain in my body. By the third trimester, I was pretty much bedridden.

Annelien: My Parkinson’s symptoms got more and more severe during the course of my last pregnancy. Before, I only took my medication once every four hours. By the end of my pregnancy, I was taking my medication once every three hours.

In the first trimester, I was vomiting a lot due to pregnancy hormones, which totally sabotaged my medication intake and made controlling the condition a real challenge. I struggled with sleeping issues, suffered from more ‘off’ periods during the day and dealt with longer periods of tremors in my hands. I worried more. Though the delivery was not negatively influenced, the whole experience was very different to my other pregnancies.

Dr Annelien Oosterbaan with her family.

What more needs to be done to support pregnant women with Parkinson’s?

Ellie: Something that really should be given more thought and sensitivity is bottle feeding. I was told it would be unlikely I’d be able to breastfeed due to the medication I was taking – not a risk I was prepared to take. But I was not equipped for the emotional trauma that this caused me. Yes, my babies were fed. But I felt this choice was stripped from me (because of the condition), and I was resentful of this. Some emotional support and signposting of where to get advice would be excellent, as frankly, I had none.

Richelle: I know women with Parkinson’s who have been told not to have a baby because they wouldn’t be able to cope and women who were told it was okay to take agonists while others were given the opposite guidance. This advice can make the difference between choosing to have a baby or not. That needs to change. The risks need to be discussed on an individual basis.

Soania: Ultimately, there needs to be a change in the way we treat women with Parkinson’s during pregnancy. We need to develop standardised treatment guidelines, and this will only happen when the appropriate research is done. If these were developed, it would ease some of the worries that women have about the effects of the condition or the impact medications might have on the health of their baby. Women should feel confident that their care is based on sound research or an informed expert opinion.

Dr Soania Mathur.

What advice would you give to other pregnant women who are living with Parkinson’s?

Annelien: Don’t be afraid. After delivery, I quickly got back in shape and my sleep immediately improved. Doing lots of physical exercise has helped me, and I would advise every person living with the condition to exercise. I am also working on an international registry for pregnancy and Parkinson’s, which will hopefully lead to the production of guidelines and management advice. 

Richelle: Connect with support groups for women who are going through or have gone through the same journey. Though it was bittersweet to have my daughter delivered alongside news of my diagnosis, I wouldn’t change it for the world. Like most people with Parkinson’s, we can worry about the future, but that only takes away from today. I choose to keep myself better today so there’s a greater tomorrow for me and my family.

Ellie: Listen to the healthcare professionals, but also listen to yourself and your own body. We self-manage our Parkinson’s a lot of the time: you know what’s best for you. Don’t benchmark yourself against or compare yourself to others, whether they have Parkinson’s or not.

Caitlin: Trust your gut. Some days are going to be tough and that’s okay – because the good days make up for the 1,000 bad ones. Remember how strong you are, and focus on how amazing you are for being able to grow a beautiful baby in your womb.

Caitlin Nagy and her family. Credit: Hayley Gill.

Lead image: Dr Annelien Oosterbaan

Read more:

International Women’s Day: “Everyone benefits from raising awareness”

“It’s been a really interesting journey of self-acceptance and self-love”