Parkinson’s and pregnancy: Study results and suggestions for further studies
Women and Parkinson’s part 3
To the scientists among you: Maybe some of you are working on projects dealing with things mentioned in this article already. If you have gone beyond, it would be good you informed me and I would amend the article (I would respect confidentiality where requested). Thank you.
In searching for specific studies on women who have Parkinson’s disease, I have aimed at women of child-bearing age that still have periods. After menopause, the hormonal environment inside women settles down to a relatively consistent level, similar to men’s, in that the hormone levels do not have the disruption caused by periods every month.
A recent study I have seen, pointed out that there are less than 400 women under the age of 50 diagnosed in the USA, so compared to the community at large there are very few parkie women available to go through pregnancy. Looking at this side of the ‘pond’ there are even fewer opportunities to study parkie women and how pregnancy affects their systems.
Studies on Pregnancy and Parkinson’s
The following data, collated by the Portland, OR, VA Medical Center which had rounded up 28 papers published between 1985 and 2016 detailing 79 pregnancies in parkie women between 23 to 46 years of age (4 dropped out of the study so final results based on 75 volunteers).
Half of the women found their symptoms were worse when pregnant. The other half experienced no change.
Trying out medication to ease the symptoms in the ‘worse’ group improved symptoms for only 33 percent of participants – the other 67 percent noticed no improvement.
Incidence of birth defects and/or complications giving birth did not change.
Women who are or are planning to get pregnant should not take Amantadine as it can damage the foetus (Heart abnormalities). The FDA approved amantadine in the USA for use as an anti-viral drug and an antiparkinsonian drug.
The greatest volume of data available on any Parkinson’s drug is on levodopa. There is sufficient evidence to recommend taking it for better health though there is not enough evidence to prove that it’s safe to use (seems like a contradictory statement?). The dosage of this medication ranges between 100 to 2,500mg per day.
Breastfeeding while taking medication to treat Parkinson’s disease isn’t advised as there is little information regarding the secretion of the drugs in breast milk. Dopamine agonists such as ropinerole and pramipexole dry up milk production preventing the possibility of breast-feeding.
There is not enough information regarding COMT inhibitors or MAO-B inhibitors to comment on the safety of using it for pregnant women with Parkinson’s disease.
64% of women who used medications to treat Parkinson’s disease reported improvement and stability while pregnant compared to 33% of women who were not prescribed any medication (what happened to the 3 percent?). Note this result is almost a mirror-image of the result above where 67 percent experienced none significant improvement.
While pregnancy is relatively rare in those with Parkinson’s, women who are trying to conceive or are already pregnant could do with a helping hand. There is limited evidence that shows levodopa can be taken for Parkinson’s to reduce the severity of symptoms throughout pregnancy but more needs to be done to find out appropriate dosing for both mother and child.
The worsening of symptoms from Parkinson’s endured by pregnant women is possibly explained by the usual progression of the disease, changes in how medication is metabolised during pregnancy, the levels of stress one feels, and due to the lack of intake of levodopa.
The symptoms include the usual pregnancy joys women experience (yes I am being sarcastic!) though felt more profoundly by women with Parkinson’s. The changes include a change in body shape, slowing down of movements, morning sickness, tiredness and even disturbed sleep. We can also expect constipation and frequent urination.
Another report showed Parkinson’s symptoms getting worse at 15 months postpartum (giving birth), which suggests that there is a long-term negative impact of childbirth on the course of the illness.
The authors of this study advise caution interpreting the data as recommendations would be based on a few cases. No clinical trials have been made, meaning pregnant women and medical professionals must rely on available data and using common sense. Medication that is of little benefit should be avoided.
Summing – up
Pregnancy is very rare in the parkie community but some younger women with Parkinson’s still have a chance of becoming pregnant. But there are still no exact figures or statistics that provide all the details of how it went for them. Fortunately, despite the symptoms, most cases that have been written about regarding pregnancy and Parkinson’s resulted in successful deliveries of healthy babies.
Unfortunately, because of the rarity of pregnancy in Parkinson’s women the experience and knowledge needed to treat and counsel women of childbearing age with Parkinson’s is still lacking.
If you are pregnant or planning to become pregnant, then it’s best to consult your doctor for him/her to prescribe and help you throughout the process. You will need to be extra cautious and ensure that you have a healthy diet with supervision from medical professionals to ensure a hassle-free pregnancy and delivery. As long as you take the medicine prescribed from your doctor and continue to live safely and with less stress from external factors, then you will be able to successfully deliver and continue your life as a parent with Parkinson’s disease.
Suggestions for researchers
1/ The hormonal environment in the body is the key and replicating it will make life better – trying to keep the hormone levels as close to this during periods would improve well-being but would still be different to a pregnant woman’s not only because the monthly cycle has stopped but also because a body cannot get pregnant again when it is pregnant already.
2/ Contraceptive pills create an environment in the body that prevents an actual pregnancy from occurring – could weekly doses be taken that keep the hormonal environment stable for 3 out of 4 weeks then every 4th week a dose is taken that roughly matches the actual internal environment during the period: Some testing and experimenting would need to be done to determine the required dosage as it would probably be different for everyone.
3/ Studies need to be done on COMT inhibitors or MAO-B inhibitors to determine for sure whether they would be safe to use during pregnancy.
4/ As dopamine agonists can dry up milk production could research provide alternative forms of these drugs that work the same but do not dry up milk and are safe for babies to ingest (in breast milk).
5/ Levodopa also needs to be tested more precisely to determine efficient dose levels that are not toxic but still provide effective relief from Parkinson’s symptoms.
6/ Stress levels need to be kept down: Using such as Tai Chi definitely improves movement and balance and calms the mind so would be a worthy add-on to a pregnancy health regime.
7/ Many parkie people suffer from anxiety and take drugs that help them to cope and there are almost certainly drug interactions between these drugs and ‘normal’ parkie drugs. Once again testing on a one-to-one basis may be needed to ensure safety and highlight possible safer alternatives.
8/ Parkinson’s can interfere with nutritional intake, for example the genetic problems experienced by those with the MTHFR mutation that makes it difficult to absorb folic acid and vitamin B-12 (easily overcome with specific nutrition) and vitamin D3 deficiency is common in parkie people as sunshine (which is the main source of D3 in our bodies) does not provoke a sufficient D3 response to stay healthy and once again supplementation is necessary to overcome this. With these nutritional ‘gaps’ plugged mother and child should be healthier.
And finally…. A true pregnancy story taken from East Midlands RSN Newsletter April 2014 edition 15 which had been written by yours truly.
One of our readers posed the question ‘What effect do female hormones have on Parkinson’s?’ This is a question which I have been curious about ever since I encountered the young lady whose Parkinson’s symptoms suddenly eased off and dwindled away to nothing, and I do mean nothing, no trace of symptoms at all, when she was pregnant.
After some years of suffering with severe dyskinesia and many other unpleasant symptoms, being cured and expecting another child seemed like a miracle . Alas, this turned out to be a temporary miracle as, six days after giving birth to her son, upon awakening she was greeted by all the old symptoms of Parkinson’s, back and just as bad as it had been before.
The above story is not a fictitious anecdote that has done the rounds on the rumour mill, in fact I know the lady in question. As an aside, after years of extremely bad dyskinesia she finally relented and had Deep Brain Stimulation surgery (DBS) and now lives a ‘new life’ with all those problems banished for now.
Back to the present and the above is still, as far as I know, the only case where pregnancy resulted in a complete remission of Parkinson’s symptoms; all other recorded pregnancies I have come across showed either a worsening of symptoms or at best very little change at all. This one unique case proves something that should give us all an optimistic boost and that is Parkinson’s can be cured.
PS: There are more than 100 papers published on the internet dealing with Parkinson’s every week! So as you can see the research specific to women is a tiny fraction of the total. Perhaps it is time to start redressing the balance by trying to find answers to the problems women are living with as described above.
PPS: Here is a link to 2 Parkinson’s pregnancies that were studied closely and put on the internet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4265576/