Women and Parkinson’s: “My medication only works three weeks out of four”

Women and Parkinson's

Author: Omotola ThomasPublished: 14 November 2019

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In the second in our Women and Parkinson’s series, UK advocate and blogger Omotola Thomas describes the impact menstruation has on her symptoms. From facing heightened emotions that go “way beyond normal PMS”, to struggling to get up and care for her family – her account sheds light on some of the unique challenges faced by women with Parkinson’s

I noticed a twitch in my finger in 2010, but I wasn’t diagnosed with Parkinson’s until six years later. I was 35. When I was first diagnosed, I didn’t even think about the connection between Parkinson’s disease and women. I wasn’t told anything – I didn’t know that it could even be a ‘thing’.

It wasn’t until I took part in the women’s conference, Parkinson’s Eve, that I overheard a woman say: “We all know our medication only works three weeks out of four.” She was implying that Parkinson’s medication is ineffective during a woman’s period. I couldn’t believe it. I went away and did some research of my own and found other women were saying the same thing.

From then on, I started to monitor my symptoms more closely over the month and noticed a correlation: my Parkinson’s symptoms were far worse, and my medication less effective, on the days that fell before and during my period.

During that particular week, my gait constantly feels shuffled and I can’t walk properly. I can expect to feel slower, stiffer and more uncomfortable for at least two or three days – and that’s even after taking my medication. Though it’s difficult, especially as a mother, I don’t want to add to the cocktail of medications I already take or up my dosage, so I just try my best to manage.

Omotola Thomas

The impact on motherhood

Then there’s the heightened emotions I feel. They go way beyond ‘normal’ PMS: I experience intense bouts of anxiety, depression and apathy.

The apathy, a symptom I particularly struggle with, has a significant impact on my role as a wife and a mother. Attending my children’s school events, doing household chores and sometimes simply being engaged in family life require a lot of effort. Even admitting this makes me feel guilty. Normal life shouldn’t require as much mental, emotional and physical effort as it sometimes does.

I used to feel confused by the sudden spikes in my motor and non-symptoms and didn’t know how to manage it. But being aware of why and when I am going to feel like this, ahead of time, now means I can prepare. I do this by trying to avoid situations that I know are going to upset me (though of course, sometimes this is out of my control) and exercising more.

Though – so far – the progression of my Parkinson’s has been relatively slow, during my period my worsened symptoms show me what a progressed diagnosis can look like, and it comes as a shock. The issue of intensified symptoms, and medication being less effective, is something that is just not spoken about – but knowledge is power. If women can be equipped early with the information on how Parkinson’s will impact them as women, they’ll be in a much better position to manage it.

This is still something I am trying to figure out myself, these fluctuating emotions and symptoms, but I plan to raise it with my neurologist next time I see them and open up the conversation. For now, I am just trying not to be too hard on myself.

Need to know: Omotola Thomas was born and raised in Nigeria, and now lives in Surrey, UK. She is a mother, blogger, Parkinson’s advocate and founder of ParkinStand– a platform designed to encourage people to fight Parkinson’s through physical and mental activities. She was diagnosed with the condition in 2016, at the age of 35.

Parkinson’s and menstruation: the facts

  • Approximately three million women have Parkinson’s worldwide
  • Over 3-5% of women diagnosed are under the age of 50
  • As many as 11 out of 12 pre-menopausal women feel worsened symptoms and the reduced effect of their medication in the days leading up to, and during, menstruation
  • Women with Parkinson’s say they struggle with the self-care needed during menstruation’s because of their worsened dexterity

Women and Parkinson’s: Our campaign

It is estimated that three million women worldwide are living with Parkinson’s – yet their specific needs and experiences are often ignored, leading to disparities in diagnosis, treatment and medication. Each week, we’ll be sharing the little-heard stories of women with the condition to find out how their lives are being affected by a shocking data gap when it comes to women and Parkinson’s. This is just the start.

  • We want to raise awareness of women’s experience of the condition within the medical profession, so that women’s symptoms are taken seriously.
  • We think more research is needed into the impact of Parkinson’s on women, so that they can benefit from tailored medication and treatment.
  • We want to explore ways to offer better support for those women managing the condition alongside caring responsibilities.

Join us – #WomenAndParkinsons.

For more information on women and Parkinson’s please visit Parkinson’s Europe website.

If you have a story to tell about being a woman with Parkinson’s – or some information about the impact of the condition on women for us to share with the global Parkinson’s community – please get in touch.

Read more:

Women and Parkinson’s: “We are not just variants of men”

Women and Parkinson’s: “Being pregnant was scary”

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