The majority of people with Parkinson’s are over the age of 60. They obviously don’t deal with issues such as pregnancy. So there is not a lot of research out there that tells how Parkinson’s affects a pregnancy or how a pregnancy affects Parkinson’s. One small study that tracked 17 pregnant women with Parkinson’s showed that pregnancy was associated with a permanent worsening of symptoms in 10 of the women. All the babies were born healthy and there were no complications during the pregnancies themselves. So the risk to the baby was no greater than that of any normal pregnancy. That was good news.
The bad news: no medicine during pregnancy or breastfeeding or even while trying to conceive meant that I could be off my medicine for a couple of years. This was a pretty big deal since I was taking a medicine specifically to slow the progression of the disease. At the recommendation of my neurologist, I was also taking a couple of supplements that had been shown to slow the Parkinson’s progression. All of that would have to go. So I would be giving up my meds, and taking a risk that the pregnancy might permanently worsen my symptoms.
My husband was very scared about the worsening of my symptoms. Me? I wanted a baby bad enough that I was willing to risk a worsening of my symptoms. Of course, then that brought up a whole new round of questions I had to consider. Is it fair to have a baby and possibly not be able to give 100% physically to him? I struggled with this, and with whether I was being selfish or not. There were just so many unknowns and no way to know how my symptoms would progress or if they would progress at all. I always just kept coming back to the baby. I just wasn’t ready to give up that dream.
We knew that if we decided to try to have a baby that we didn’t want to take any drastic measures to get pregnant. With my first, getting pregnant took more than 2 years. I had my Fallopian tubes cleared twice and had surgery for Stage 4 endometriosis. I took Clomid for 7 months before conceiving. However, after she was born in November, I was pregnant again in February (even though I was exclusively breastfeeding). That pregnancy ended in a miscarriage. By July of the same year, I was pregnant with my son, even though I was still breastfeeding. But it had been 6 years since he was born, and since endometriosis can grow back, it was really hard to guess at how easily I might conceive or if I would even be able to get pregnant at all.
After consulting with both my neurologist and my OB, we decided I would come off my meds 1 month before we started trying to get pregnant. That would give the Parkinson’s meds time to leave my system. My plan was to (hopefully) conceive within 6 -9 months, be pregnant for 9 months, and have some time to breastfeed the baby. That would limit my time off meds to a little over 2 years, which I considered a reasonable amount of time off. I didn’t really feel like I had 2 years, or even a whole year, to try and conceive. I needed to be back on my medicine within 2 years or so and if it took a long time to get pregnant that would not be possible. So I was praying that I would get pregnant very quickly!
Oooh, we are so in need of more research for young women with PD. I am a PD momma who took that leap of faith (such a small sample size). I fall into the group that worsened. My little guy who just turned two was so worth it but what a bittersweet thing to be pregnant and have PD; it was one of the best experiences of my life, yet one of the scariest. Really grateful that you are sharing your experiences.
ReplyDeleteBrooksie- sorry to hear you worsened. I'm now almost 9 weeks postpartum, and I don't see changes yet. I know it might be too soon to know, though. I agree that it was very scary sometimes when I was pregnant. I want to be able to enjoy my baby and his childhood. The uncertainty is still scary for me sometimes. I don't like thinking of what PD might do to me in the next few years. Most of the time I try to just enjoy the good times and not focus on the bad, but it's hard not to worry sometimes! Would love to hear your whole story sometime if you want to share it!
ReplyDeleteThis is very interesting for me. My mum has Parkinson's (she was diagnosed in her early 50's, and I am in my late 30's). I have begun to have internal tremors in my right wrist and ankle, and various other strange feelings. Have been to a few neurologists in the past for various strange muscles spasms and they said it was just anxiety. Now I'm not so sure and suspect PD. Will probably see my GP again soon, but am worried about not being taken seriously again.
ReplyDeleteBut anyway, the reason this post (and indeed blog!) is so useful is that I would love to have another child. I too have endometriosis and have blocked tubes, which I'm told they cannot unblock, so we would have to do IVF. I'm worried about the impact this and (if successful,) a pregnancy might have on my body, and my various nerve problems/(PD?)
Also, thinking about my daughter, I have to weigh up the joy for her of having a brother or a sister, and the risk that my health may deteriorate, and I won't be able to do so much with her. It's a real quality of life dilemma for us all, but especially her.
So I'm glad to come across this blog. I'm glad that your symptoms didn't get worse with pregnancy. I'm sorry to go on so much about my own dilemmas. It's just nice to find some people who might understand this a little, and be able to vent! x
People like you are a big part of why I started this blog! Not only is it difficult to get answers when you are young and exhibiting Parkinson's symptoms, it is also incredibly difficult to find out what effects pregnancy might have on symptom progression. And it also sucks to be young and dealing with older person health problems, so it's nice to find people who understand. Vent away, because I certainly understand!
DeletePregnancy was difficult because I was used to medication and could no longer take it. I was tired much more often than I had been in my prior pregnancies. But my symptoms did not get worse.
I am now 15 months postpartum. For the first year following the baby's birth, I was better (overall) than I had been prior to pregnancy. Hormones, maybe? I'm not sure, but even my husband often remarked about how much better I seemed. But for the past 3 months, I've noticed symptoms being more pronounced. Hormones wearing off, possibly? But I've also had a lot of stress lately, and stress is terrible for Parkinson's - it makes symptoms worse, so that could be the reason as well.
Whatever you decide to do, I'd love to hear how it goes, so please keep in touch! Feel free to email me at shakymommy at gmail dot com if you just need to talk - we mamas have to stick together, especially when dealing with things like this. Good luck! :)
Thank you, you are very kind. I may email you at some point. But in the meantime I'm happy to find your blog, and read about your story. It's great to find someone who understands.
ReplyDelete(By the way, congratulations on your son. He looks lovely from the photos. Sorry to hear that your symptoms have become more pronounced. I know that stress can be a factor with symptoms. I am trying to find ways of being less stressed. It's hard sometimes).
Take care. x
Thank you, you are very kind. I may email you at some point. But in the meantime I'm happy to find your blog, and read about your story. It's great to find someone who understands.
ReplyDelete(By the way, congratulations on your son. He looks lovely from the photos. Sorry to hear that your symptoms have become more pronounced. I know that stress can be a factor with symptoms. I am trying to find ways of being less stressed. It's hard sometimes).
Take care. x