Pregnancy and Parkinson’s disease: Navigating care before, during, and after

Dr. Lehn, thank you very much for joining me for today's episode.

Dr. Alexander Lehn: Thank you for having me.

Dr. Divyani Garg: Let me begin by asking you then I also noted in this review that it is actually an amalgamation of the efforts of the MDS Scientific Issues Committee. [00:01:00] But along with that, the subgroup of the early onset Parkinson's Disease Study group of the MDS Women in Movement Disorders Special Interest Group , and the author spanned a large number of s pecialties, including persons with lived experience of pregnancy and Parkinson's disease. So what prompted the MDS Scientific Issues Committee to develop this review? And why was this amalgamation of experts important?

Dr. Alexander Lehn: Yeah. Oh, thanks. Very much so we tried to get this whole group together for a good reason. And I'm part of the MDS Scientific Issues Committee, but this is very much not just the scientific issues committee paper. And the other group members that have participated from the groups that you mentioned were absolutely integral in the development of this.

For us, it was important that we have something clinically relevant in this issue of managing pregnancy and pregnancy related problems in women with Parkinson's disease. Because this is one of those issues where is very little data available at the moment, but those [00:02:00] issues occur frequently enough that people amongst us who see patients many times with movement disorders certainly will experience issues and come across those patients many times.

So what we wanted to get together is a group of professionals who have some expertise in those various areas. So many of us are neurologists, but we have obstetric medicine specialists. Some psychiatrists were involved as well. And as you mentioned, two of the authors are both doctors, but both women with lived experience with Parkinson's disease.

And for us that was really important that we have them involved as well to include really meaningful data and and guidance for health professionals but patients as well to have a pragmatic guideline that people hopefully will find helpful in clinical practice.

Dr. Divyani Garg: Yeah, that's really fantastic. And something that I really liked when I was going through the review was that you emphasized that every visit with a woman of reproductive age group who has Parkinson's [00:03:00] disease is in fact an opportunity for preconception counseling. So what would be neurologists or other clinicians or people who are managing these persons, be routinely discussing with them, even if, the woman is not immediately contemplating pregnancy, what would be the routine guidance that

Dr. Alexander Lehn: I think that's something important for all of us to learn. And I'm not asking neurologists to be pregnancy specialists or obstetric specialists by all means. But as you made that point that is something that we really wanted to get across, that every consultation you have with a woman of reproductive age in our case with Parkinson's disease.

Is an opportunity just to have some discussions, even if a pregnancy, for example, is not currently planned or not at all planned. And that does not necessarily mean detailed family planning for those patients. But just have discussions around the topic to normalize those conversations earlier as well.

And there's some key points I think, that are important. One for example, to reassure patients [00:04:00] who think about starting families or having babies in the future. That Parkinson's disease itself does not appear to reduce fertility and pregnancy outcomes don't seem to be adversely affected either in women with Parkinson's disease.

And the data is pretty clear and I think that is something important to get across to patients. Then it is also important to discuss medication choices and for patients and treating doctors to understand that the choices of medications might have implications later. And we probably discussed some of the difficult discussions around it afterwards.

For example amantadine is a drug that we know is harmful for the unborn babies to plan ahead for that early. But also, for example, to discuss trajectories of symptoms. How might your symptoms develop during pregnancy? Or let's say as you try to become pregnant? Or let's even say if you might undergo IVF treatment trying to be pregnant, what might this mean for your symptoms during that period?

Then for example, have discussions around [00:05:00] genetic considerations. Would genetic testing be something you want to consider beforehand? So patients, when it really comes to it, don't feel rushed into those discussions and decisions but have some time to reflect on these issues. And I think even just brief conversations around it can prevent a lot of angst and panic driven decisions then later in the process.

Dr. Divyani Garg: Yeah, I think that's very helpful to consider. Just having a conversation around the topic itself might be some barrier that we can try to overcome. Another very important and perhaps it's not that common a scenario, but what if a patient who has genetic Parkinson's disease and this lady contemplates pregnancy and comes to you as a clinician, what is something that we can do in terms of approaching the conversations around genetic counseling and genetic testing in such scenarios?

Dr. Alexander Lehn: Certainly in this age group of patients a very important topic and particularly in. Women with Parkinson's disease who might consider starting families or having families [00:06:00] again, just as much as I'm not asking neurologists to become obstetricians neurologists do not have to be geneticists but in the area we work in some understanding around it's important and have some grasp of how to manage these issues I do think is important as well.

I think it's, first of all, important to, for us to understand that genetic counseling should be offered. This is not imposed, so people don't have to have genetic counseling. Many women with early onset Parkinson's disease are super keen to have a lot of information, as much information as possible at hand, so they can.

Make decisions in an informed way, but some women or some families might not want to. And of course, it's absolutely valid as well. And just having those discussions to understand their wishes I think is really important. For me personally, and I'm not asking other people to do exactly what I do.

If I, for example, as you say, have a patient with a confirmed genetic condition, having some understanding and being able to explain patients the basic inheritance [00:07:00] patterns things like penetrance and uncertainties around that. I think that's something even as non-geneticists we probably should be able to do in a reasonable way with families.

Then also, for example, to explain to patients and their families or separate the difference between things like genetic risk and disease severity. 'cause these are often conflated to be able to explain those things. But then also absolutely, particularly in this group, to really involve a trained geneticist early so they can have more in-depth discussions around that.

So lay the groundwork, but I would. For really all cases suggest to offer involvement by geneticist early and then, i'm not asking for people to know all the details around that, but for women who might wish to explore options further, to at least be able to have some basic discussions about pre-implantation, genetic testing, prenatal testing and of course explain to patients that is absolutely based on their autonomy and informed choice.

But I think [00:08:00] families being aware that these options in many countries are available nowadays, I do think is important.

Dr. Divyani Garg: Yeah, that's a really important thing that you said to definitely lay the groundwork, but also get involvement of the clinical geneticists maybe for detailed discussions. So let us go to something that you alluded to earlier and, what are some of the most common, let us say, medication related pitfalls that clinicians should avoid while managing pregnant women with Parkinson's disease?

For example, like you had mentioned regarding amantadine, which is contraindicated.

So adjustment, may suggest a risk of motor worsening in these scenarios. So how should one go about balancing that?

Dr. Alexander Lehn: Yeah, so I think if you can get the pre-planning right, a lot of those acute issues can be avoided very early. So discussions early, ideally. Plan for pregnancies early. Having said that, of course life happens and sometimes pregnancies might happen without planning ahead. So we need to be able to act on acute situations as well.

[00:09:00] I think generally a common pitfall is that people overreact and make dramatic changes too quickly, although they might not be necessary particularly with often limited information that is available. Okay, so a few pointers that we need to know overall little data, but there's reasonable data that levodopa, so either in the form of levodopa/carbidopa, or levodopa/benserazide is reasonably well studied, appears to be very safe, and that as a monotherapy is a very safe option. Really from then onwards, all other agents we use. The available evidence gets very thin. And for many of the other agents we have limited data. Dopamine agonists appear to be pretty safe as well, but we have limited data for most of the other agents.

What we do know is amantadine is clearly unsafe, clearly harmful for the unborn baby. So that is something I would strongly suggest if there's any thoughts, ideas about becoming pregnant, really get out early on. Of course, if you have a patient who has fallen pregnant really stop [00:10:00] amantadine as soon as you can.

And I think you touched on that already as well. It is important to know as well. Many of us, I think, are over-cautious then, and to try to be super, super safe, and yes, absolutely only levodopa, but for many patients with young onset Parkinson's disease with often and significant motor fluctuations, it's really difficult to just maintain them purely on levodopa.

So in discussion with patients and their families, of course, need to really weigh up risk and potential benefits for patients. And don't forget, there is also risk of being undertreated, obviously for the patient, but also for the unborn baby. That might be aspiration risk f or the patient herself, there might be the reduced ability to actually give birth for a person who's undertreated or reduced ability to look after the newborn baby afterwards. So these are not just theoretical risks that need to be taken into consideration as well.

Dr. Divyani Garg: Yeah, I think from what I understand, you're saying that given the evidence amantadine is definitely to be taken off or not advisable, [00:11:00] levodopa is safe in whichever combination, carbidopa, benserazide. But for the others, we probably need to deal with it on an individual case to case basis in discussion with the patient.

Dr. Alexander Lehn: Absolutely. So I can give you one example. One of my patients just has given birth a few months ago. And we actually in discussion then remained her on Levodopa/Carbidopa and entacapone because purely basic Levodopa monotherapy was clearly not managing her motor symptoms adequately.

And she had a wonderful, healthy baby. So all went well, but I appreciate this is a certain calculated risk to take but I think we need to be pragmatic in those situations as well.

Dr. Divyani Garg: Yeah, that's really helpful actually. So let me just shift gears a little bit towards the non-motor aspects, because pregnancy is a condition where we do encounter women with a lot of non-motor challenges. What are the, some of the practical screening strategies that you would recommend. 

Dr. Alexander Lehn: Yeah, look, I would suggest be proactive, like in most other areas. [00:12:00] Knowing what you're dealing with helps a lot rather than be caught off guard when things are really severe. There are obviously certain on motor issues that are particularly an issue in pregnant women who have Parkinson's disease.

So nausea of course is an issue, nausea and vomiting, major issue. So you think not being able to keep medication down or absorb medication, of course is a major issue. As you can imagine, orthostatic hypotension is a big issue in pregnant women generally. But if more so in pregnant women with Parkinson's disease, you can imagine sleep disturbance a common problem in patients with Parkinson's anyway, but even more during pregnancy, constipation of course major issue in patients with Parkinson's even more so during pregnancy. So there are several of these non-motor issues that are particularly important to address in it. So I don't think there are any surprises.

So what I would suggest for us health professionals to be structured, to routinely screen, particularly for these more common non-motor issues, rather than wait for patients to volunteer these symptoms. And I think that'd be [00:13:00] perfectly fine, which is the tick and flick.

Okay. Just go through the more common non-motor issues every time you see a patient. And then I would suggest, 'Cause these can be very complicated to manage them. Really get in touch with your obstetric medicine team, obstetricians or depending on the other issue, psychiatry team or physiotherapy team early and manage those in a multidisciplinary fashion.

Dr. Divyani Garg: Yeah, so it would be useful to just go through that non-motor symptoms checklist, like you suggest particularly in these patients. Yeah. Deep brain stimulation or DBS is being increasingly offered to patients with Parkinson's disease. How should pregnancy planning influence the timing of DBS, if at all?

And what should neurologists remember about DBS in pregnancy?

Dr. Alexander Lehn: So I do think this is something we will all encounter more frequently going forward, that we have young women with Parkinson's who had DBS surgery. And then think about getting pregnant. So actually my patient has just given birth, we actually did DBS surgery on her in preparation for pregnancy, and she had a healthy [00:14:00] baby with DBS in situ.

So it can be done. And another thing to consider in terms of medication, potential medication risks we discussed beforehand. Having DBS done might actually of course reduce fetal exposure to certain medications which is important as well. Clearly timing matters in that regard. So this is something needs to be pre-planned.

You don't wanna do DBS surgery in a pregnant patient then and there are other aspects of that should be thought of before and as well. So generally, for this patient cohort in particular, we would suggest rechargeable batteries rather than non-rechargeable batteries. If you do have a patient with a non-rechargeable battery, we can often predict how long those batteries will last to make sure if the battery might need to be replaced during the pregnancy period.

Replace the battery beforehand. Don't push your luck and wait until the battery runs out while the patient is pregnant and then all of a sudden you get into trouble. There are some important aspects for the [00:15:00] labor period, peripartum period, that are important to know as well. So one is stimulation, DBS stimulation usually is switched off during delivery because the DBS stimulation interferes with fetal monitoring. So that's something for us neurologists to to, I guess to be aware of. Having said that, and that's something people should be able to discuss with their patients as well.

DBS itself is not a contraindication for the vaginal delivery or for breastfeeding, which we might come to later as well. So both of these are possible in patients who had DBS as well. Clearly these are again patient groups you really want to link in very closely with your obstetric medicine team and the anesthetist to manage those patients appropriately.

Dr. Divyani Garg: Yeah, very important points. All of those. And on that topic let us also talk about breastfeeding, because breastfeeding decisions can be quite complex. So how can we counsel patients about breastfeeding while they're on anti Parkinsonian medications or any other caveat?

Dr. Alexander Lehn: Yep. Shared decision making is really [00:16:00] important in this group. Of course, there's limited data available. We do know from what we do have available that levodopa is actually exposed in the breast milk, but the exposure rate is very small and it appears to be safe in infants as well.

So that's that's good to know. As you might remember from your medical school times dopamine drugs might reduce lactation, so there might be an issue as well. And I guess something to link in with the multidisciplinary team. If there are women who want to breastfeed and there's, if that's their choice, we should absolutely support that in any way we can. Then levadopa monotherapy for those reasons is preferred if at all possible. Dopamine agonists are possibly safe but are more limited in data and might suppress lactation. And of course then baby's health needs to be monitored closely in women who choose to breastfeed whilst being on medication.

Dr. Divyani Garg: Okay. That's super helpful. And I also wanted to ask you about PregSpark. So how do like PregSpark help [00:17:00] move this field forward towards evidence-based guidelines and how can clinicians support this effort?

Dr. Alexander Lehn: Yeah, no, I think it's a absolutely fantastic job. The team around PregSpark has done with it 'cause they addressed the very central problem that we discussed and the reason why we both here today which is the lack of systematic data in this group. We will realistically never have randomized controlled trials for these issues.

So that's really not feasible. So having well-designed registries like PregSpark really is the best path forward for us. And what PregSpark and similar kind of registries allow for is global data that's patient reported, longitudinal follow up for health of both mothers as well as the children, and really have real world insight into many of those issues that we struggle with.

And we have limited data so far. So medication safety, delivery outcomes in those patient groups, disease trajectories during pregnancy. So I strongly urge all of you out there be aware of it. [00:18:00] Flag it up for your for your patients and around discussions. So hopefully I don't butcher it now.

But the website is www.pregspark.com. So make sure you tell your patients about that. Really simple to sign up. Really important to sign up for all your patients.

Dr. Divyani Garg: Thank you, Dr. Lehn. It has been absolutely wonderful to converse with you. Thank you so much for joining me for this podcast today.

Dr. Alexander Lehn: Thank you very much for having me.