For those with PD ‘time of the month’ is particularly tricky. As ever, it’s not the same for everyone, but many women find that for those few days the drugs don’t work.
The assumption that PD is a disease of the elderly – predominantly affecting those over 60 and, of those, mainly targeting men, makes women of child-bearing age a bit of a minority. Research into this group and their specific symptoms and problems is accordingly quite thin on the ground and, until quite recently, the drugs companies were not keen on including female Parkies in this age bracket in their trials. (The memory of Thalidomide endures.)
Finally, we are starting to see some research into young Parkie woman, who have for some time been asking each other on forums if anyone else struggles with a Parkie period.
From our own very small research pool (of one), we have found little help available. The Spotlight Editor, diagnosed three years ago, has been asking to see a gynaecologist with PD knowledge for three years. She’s come to the conclusion that perhaps there isn’t one in the UK.
Happily information is – finally – filtering through online…
Here’s a good overview – God bless America – from the American Parkinson Disease Association, written by Susan M Rubin, MD.
And one underlining the need for more research and gender-specific support – from the Parkinson’s Disease Foundation, written by Robin Morgan.
We also discovered, Parkinson’s Diva: A Woman’s Guide to Parkinson’s Disease by Maria De Leon, MD. (The Kindle edition is cheaper.) We hope to interview Maria – a neurologist specialising in PD before she was diagnosed with the condition herself.
So, where are these young women with PD – those who have been correctly diagnosed, in any case? Mostly, they’re getting on with their lives – many as wives and mothers. That natural caring instinct and those roles are key perhaps to why there is such little awareness for this group. They are busy looking after their families; their own needs often come a poor runner-up. Even if they had the inclination to find out more, do they have the time?
Well, listen up ladies… we’re going to try to help you here. Let us know what you want? A closed women-only forum? Access to specialists? Your own conference?
As ever, we welcome input from other groups. Spotlight is happy to publicise what’s already out there and up the exposure of existing women’s Parkie groups – just get in touch.