Pregnancy and Parkinson's: Ellie's story
Ellie has young onset Parkinson’s. Soon after receiving her diagnosis, she found out she was pregnant. This article tells Ellie's story and gives some tips on managing pregnancy when you have Parkinson's.
Ellie was diagnosed with Parkinson’s in 2013 at the age of 29. The first thing she noticed was a tremor in her little finger.
“I told my parents about it and they said I should go to the GP. I remember I was training to do the Great North Run that year and my gait was really off too.”
She went to her GP, who was at first reluctant to consider she might be showing symptoms of Parkinson’s, which is much less common in younger people.
Ellie pushed for a referral to a specialist and eventually saw a neurologist. They arranged for some tests and later confirmed it was Parkinson’s. Friends and family were shocked, but Ellie wasn’t.
“I just had a feeling,” she says, “you know when you just know?”
News of a different kind
Within a year of receiving her diagnosis, Ellie and her husband Tom received some more news – Ellie was pregnant.
“I remember thinking, ‘OK, I’m pregnant. What does that mean? What do we do?’ And no one really knew the answer, it was scary. Even my consultant had to look stuff up on the computer at times and tried to contact other specialists, but there were no definitive answers.”
Despite the lack of information on managing a pregnancy with Parkinson’s, Ellie says she felt supported by her healthcare team, especially the midwives.
“They were brilliant and so reassuring. I was given extra scans to make sure my baby was healthy. I felt really well looked after. It was really encouraging to see the growth of my baby.”
“When you’ve got Parkinson’s it’s really easy to think every symptom is because of that. It can be difficult to decipher what is Parkinson’s-related and what isn’t!”
Parkinson’s drugs and pregnancy
When Ellie first discovered she was pregnant, she was taking a low dose of Parkinson’s medication. She was concerned about the effect the drug might have on her baby, so she discussed this with her neurologist.
Ellie’s neurologist said she would benefit from staying on a low dose of her Parkinson’s medication. He explained it was probably safe during pregnancy, even though he could not be completely certain due to the lack of research in this area.
In the end, it was up to Ellie and Tom to decide whether she should continue to take the medication during her pregnancy.
“The decision was ours in the end,” she says, “I was on such a low dose that I don’t think it would have had any impact, and if my neurologist thought it was a really bad idea, he would have taken me off the medication."
A new arrival
Ellie found it hard to feel prepared because of the lack of information about pregnancy and Parkinson’s. As her due date approached she was feeling increasingly anxious. She attended antenatal classes and found them helpful, but there was no advice specific to Parkinson’s.
Charlie was born 3 and a half weeks early, on the day of Ellie’s baby shower. It was a natural birth, Charlie was healthy, and he and Ellie went home the next day. But more challenges lay ahead.
Breastfeeding
“One of the hardest things was not being able to breastfeed,” Ellie says. “My consultant advised against it because the medication I was on was likely to pass through breast milk.
“I had to bottle feed and, whilst I’m a firm believer that fed is best, at the time I found it quite traumatic being stripped of my choice.
“It’s already really emotional having a baby, and all the people around me were breastfeeding. I would’ve at least liked to have been able to try.”
A second arrival
Not long after having Charlie, Ellie was pregnant again.
“It was a conscious decision to have Sophie soon after Charlie because my Parkinson’s symptoms were still mild. Pregnancy would have been a lot harder later on with more symptoms. I just thought, why would you want to wait if you’ve got a condition that’s not going to get any better?”
Ellie found that she felt much more confident with her second pregnancy, even if she and her healthcare team still didn’t have all the answers. But the birth itself was more difficult than her first.
Sophie’s position at birth was back-to-back, which tends to mean labour is longer and more painful. But Ellie wondered if her Parkinson’s may have contributed to the difficult birth too.
“With Sophie, I found it really hard to push, and I had a bad tremor in my leg at the time” she says.
“People are often really surprised when they find out I have Parkinson’s. I’m tired a lot of the time but that’s partly because I’m running around doing a million things at once - it’s not necessarily because I have Parkinson’s.”
Managing Parkinson’s symptoms
Ellie faced having to manage her Parkinson’s symptoms during pregnancy and as a mother to newborn babies. Sometimes it was hard for her to know what symptoms were caused by her Parkinson’s. Many of the changes caused by pregnancy, such as tiredness and balance problems, are also symptoms of the condition.
“When you’ve got Parkinson’s it’s really easy to think every symptom is because of that,” Ellie says. “It can be difficult to decipher what is Parkinson’s-related and what isn’t!”
Anxiety, which is another common symptom of Parkinson’s, could be quite severe at times for Ellie, and the worries she had about her pregnancies made her even more anxious.
Ellie says that getting enough sleep was crucial for managing her anxiety. As a mother to a newborn, it can be hard to get enough sleep, but she made sure she took naps when her babies were sleeping.
She was concerned about her balance problems too. She made sure to be mindful of this problem and plan around it. For example, she always changed the babies while sitting on the floor.
Motherhood and Parkinson’s
Ellie is now a busy mum who works part-time as a freelance translator. She also volunteers for a local charity in her free time.
“People are often really surprised when they find out I have Parkinson’s. I’m tired a lot of the time but that’s partly because I’m running around doing a million things at once - it’s not necessarily because I have Parkinson’s.”
She says that Charlie hasn’t asked questions about her condition yet.
“It’s so weird because I do shake. One of Charlie’s little friends came for tea recently and I was cutting up a carrot in the kitchen. He instantly asked me ‘Why are you shaking?’ He noticed straight away, but Charlie sees what’s normal for him.”
She is prepared to answer any questions her children have about her condition, in a way that they can understand. She says that Sophie has just started asking questions about the tremor in her hand. Ellie has explained to Sophie that her brain can’t send the same messages to make her left hand work properly all the time, so she needs to take medicine to help it.
Ellie’s message to other women in the same situation is that she is proof it’s possible to give birth to healthy babies while living with Parkinson’s, and to make sure to get enough support from your healthcare professionals.
Tips for managing pregnancy in Parkinson’s
For women who have Parkinson’s and become pregnant, here are some tips for managing pregnancy and Parkinson’s symptoms.
Balance problems
Changes to body shape and a shift in your centre of gravity when pregnant can mean that your sense of balance is affected. Together with Parkinson’s symptoms this can increase the risk of falls.
Speak to your healthcare team for advice on posture and, if necessary, a physiotherapist can advise on balance and using a walking aid if needed.
Slowness of movement
Allow more time to do daily tasks. Remember, you will probably feel more tired than usual, so this will help manage your energy levels too.
Nausea and vomiting
A common symptom of pregnancy is morning sickness. This can cause a number of problems in Parkinson’s. It can mean women with Parkinson’s can’t keep their Parkinson’s medication down for long enough for it to start working. Morning sickness can also cause dehydration, tiredness and a general feeling of being unwell.
Importantly, some anti-sickness medications can make Parkinson’s symptoms worse, so they should not be given to people with Parkinson’s. If you’re concerned, speak to your specialist or Parkinson’s nurse.
Try to eat 6-8 small meals a day, as well as avoiding high fat and very spicy foods. Starchy foods, such as bread or dry breakfast cereals, can also help with nausea.
If you are unable to keep food down, speak to your GP or midwife for advice. Remind that people with Parkinson’s can’t take certain anti-sickness drugs.
Constipation
Constipation is another common Parkinson’s symptom that can also happen in pregnancy.
Drink plenty of fluids and have a diet rich in fibre to reduce the risk of becoming constipated.
Fatigue
Some people can find pregnancy very tiring. This can be because you’re not as comfortable as night, so sleep can be interrupted. You may also find carrying out your usual activities more tiring than normal. Parkinson’s can also cause fatigue and tiredness. Try to rest during the day wherever possible.
Getting information and support from your healthcare team
Most healthcare professionals have no experience caring for pregnant women with Parkinson’s, as there are so few cases. But positively, evidence shows that the majority of women go on to have healthy babies.
Another positive from Ellie’s experience was that, even though her healthcare team didn’t have all the answers, they were very supportive and monitored her closely. So make sure that you receive the support you need from your Parkinson’s team and your midwives, and don’t be afraid to ask for extra support if you feel you need it.
It is particularly important to discuss Parkinson’s medication with your specialist or Parkinson’s nurse, as some Parkinson’s drugs may not be safe to take during pregnancy.
Photo credit Paul Meyler.
- PregSpark has an online registry designed for women around the world who have Parkinson’s and are pregnant. You can find out more about their work here.