Women and Parkinson’s: “I didn’t know women got Parkinson’s!”

What are the challenges of being a woman with Parkinson's today? Two women share their experience, and their advice for others.

For many years - until as late as the 1990s - women were excluded from medical research, with male bodies being treated as standard. Although this is now changing, it means that the data that researchers and healthcare professionals use to recognise and treat many conditions, including Parkinson’s, is incomplete. 

"GPs don’t like talking about ‘girly stuff’ - but you have to keep pushing" - J

Making the link

For J, getting the right combination of hormone replacement therapies (HRT) has made a bigger difference to her quality of life than starting Parkinson’s medication: “I was like the Tin Man before HRT. But it took 3 different combinations to get it right. You have to keep pushing and ask for a change if you’re not happy.”

But it was keeping a diary of her symptoms over several months that really showed the link between her Parkinson’s symptoms and menstrual cycle. 

“I looked back at my diary and noticed that stiffness came in waves, peaking every 3 to 5 weeks. Each time, I could barely walk because my leg was dragging so much. So I suggested to my consultant that there might be a hormonal link.” 

J swears by the benefits of exercise to help manage her symptoms - and it’s also important to keep bones strong. “In the last couple of years I’ve broken my sternum and arm in falls.” Although everyone’s bones get weaker as we get older, it’s worse for women, and for people with Parkinson’s. 

So women with Parkinson’s are at an even higher risk: around 4 in 10 of them will develop osteoporosis, which makes broken bones more likely.

“We need more research - when I ask my consultant ‘could it be this?’, I want them to have answers” - J

So much to learn

J is frustrated by how much we still don’t know about Parkinson’s in women. “My grandma had Parkinson’s too, and for years she was told she had a frozen shoulder. I remember my grandpa cutting bits out of the newspaper and reading them to her - it was long before Google. 

"It can’t be right that I’m on the same medication as her, all these years later.” 

“You can tell that women are underrepresented in Parkinson’s research when you look at the equipment for infusing produodopa. The pump and wrist monitor are far too big for the average woman, but there’s only one size available.” - G

One size doesn't fit all

“I’m taking the same drugs, and the same dosage as a male friend with Parkinson’s but we have vastly different body sizes. I went to pick up my prescription and another customer said ‘I didn’t know women got Parkinson’s!’”

Although research is now starting to look at the relationship between Parkinson’s and menopause or pregnancy, G says there’s still a long way to go when discussing sexual relationships and Parkinson’s. 

“Compulsive sexual behaviour is a recognised side effect of some Parkinson’s medication. There’s space for this on the form when you go to follow-up consultations, which is often left blank. If the neurologist doesn’t raise the issue, you can ask about it as a way to start the discussion yourself.”

“Men and women must be different -  aside from the biological differences, we’ve been socialised to cope with challenges in very different ways” - G

J and G's tips for other women with Parkinson's

  • Keep pushing if something’s not right. Or find someone who can advocate for you.

  • Do as much exercise as you can, and ignore what other people think. And if you’re facing a long wait for an appointment, ask if there have been any cancellations. Without it, my diagnosis would have taken another year.

  • If you want to talk to your GP about sex, start the conversation yourself. The only time my neurologist asked about my sex life was the one time my son, rather than my husband, had come with me. We were flabbergasted!

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