Movers and Shakers: Women and Parkinson's

This week’s episode of Movers and Shakers, the award winning podcast about living with Parkinson’s, is presented by a woman determined to dispel a few myths. Gillian Lacey-Solymar is out to show us that no, Parkinson’s is not just a disease of old men - it affects millions of women too and they are not getting the treatment they need.

Gillian is used to finding herself outnumbered by men as the one woman in our group of six but this week she has two strong female voices alongside her. Richelle Flanagan is a dietitian and leading expert on nutrition and Parkinson’s while Shafaq Ali is a dentist and an honorary research fellow in neurology at Queen Mary University of London. Both women have Young Onset Parkinson’s and are passionate about getting the female perspective on their condition understood by the medical profession.

From left, Shafaq Ali and Richelle Flanagan with the Movers and Shakers

First, Richelle hits us with some facts: “40% of people with Parkinson's in the western world are women. And actually, in some research studies, it's actually closer to 50%.” She says in eastern countries like Japan, more women are affected than men. There’s a theory that Japanese women have been more likely to work in agriculture and therefore be exposed to the pesticides which some researchers believe can cause Parkinson’s.

People with Young Onset Parkinson’s - those diagnosed with the condition before they are 50 - represent around 30% of the total, and again 40% of these are women.

“It's a large number that's not been represented in clinics or in research,” says Richelle, and she hammers home the point that Parkinson’s is different for women. For instance. the menstrual cycle appears to be an important factor in the severity of symptoms, with different levels of oestrogen during the cycle apparently to blame. A survey by a group of researchers found that 80% of women reported that their symptoms got worse the week before their period:

“That makes sense,” says Richelle, “because before you have your period, your oestrogen drops. You have oestrogen receptors in your brain. Those oestrogen receptors and how oestrogen interacts with them affects how your dopamine works in your brain.”

It has also been found that women who have gone through the menopause and no longer have the protection offered by oestrogen are more likely to get Parkinson’s. Which brings us to our second guest Shafaq Ali, who describes her nightmare experience with doctors who just did not take her seriously.

In her mid-30s she began to notice changes in her body and her personality - from hot flushes and an inability to sleep to losing her temper with her children. She thought she might be about to start the menopause but then at 40 she was diagnosed with Parkinson’s. An appointment at which a male GP said she would be better off talking to one of his female colleagues but might do well to lose some weight put her off consulting doctors for a while.

“Eventually, I went back saying, I'm not feeling very well again, getting lots of sleepless nights. And I don't think it's just the Parkinson's.” Then blood tests revealed the truth - at 43 she was not going through the menopause, she had been through it and come out the other side some years before.

And that turned out to be bad news - she should have been put on HRT a long time ago:

“Had I started HRT when I was supposed to start HRT, not only would my symptoms have been better, my Parkinson's might have progressed less..”

Richelle Flanagan says Shafaq’s story is one of many where doctors fail to see that women with Parkinson’s have different needs from men. She quotes another survey conducted by the Michael J. Fox Foundation: “90% of the women said that the neurologist did not ask about hormones, did not discuss about the impact of hormonal changes on their symptoms, did not talk about HRT.”

Another problem is that women are under-represented in clinical trials and other research - even in animal testing, only male mice are used. Shafaq has been working with a Parkinson’s UK committee trying to make research more relevant to women and ethnic minorities. She says researchers must try harder:

“It's not that people aren't wanting to take part in research, it is that things aren't made available to them in a way that they are able to take part. It's easy to work on the male rat. It's easy to work on the men who are able to relieve themselves of their obligations at home and go to labs or whatever to be assessed. It's the fact that researchers haven't made themselves available, not that women aren't available.”

So, after hearing from these three brilliant women about this sorry state of affairs, what do the men around the table think? As ever, it is Jeremy Paxman who comes up with the most pithy response:

“It's been a bit of a wake up call for me…I hadn't realised that there were so many women with Parkinson's, and I hadn't realised that the dice was so loaded against you. It's not fair. It's really not fair, and I think it's a fucking disgrace.”