“We need to be having more conversations about menopause”

Heather Kennedy, a writer, advocate and mother who lives near San Francisco, US, lays bare the physical and emotional challenges of managing the onset of menopause with Parkinson’s – from the night sweats and a decreasing interest in sex to the sense of “turning inwards”

I was first diagnosed with Parkinson’s in 2011, at the age of 41.

As I approach the menopause, I’ve noticed changes in myself. First of all, I have a lower libido. I just want nothing to do with sex at the moment, which is unusual! Secondly, I find myself turning inwards. I find myself getting quieter and retreating into my shell, which means I’m further isolating myself inside this condition. I implore women with Parkinson’s to make sure you connect with other women at this time in your life – talk to one another, come together. We need to be having way more conversations about menopause, and particularly about how menopause affects women with Parkinson’s. This getting smaller, this sense of receding as a person – it’s the opposite of what people with Parkinson’s should be doing.

I never questioned how the condition might affect me as a woman until I started experiencing unexplainable off times in the days leading up to my periods. I was complaining to my girlfriends, when one friend schooled me. She explained that during periods the efficacy of women’s medication decreases. No one had ever told me that! I then started to notice the pattern like clockwork. Since being perimenopausal, though, my periods have become far more unpredictable in heaviness and length.

“That just doesn’t feel sexy!”

I have started to sweat through my sheets every night. I was unsure if it was a result of my medication or because of the menopause, and that’s the problem – none of these changes happen inside a vacuum. It’s not like I can pinpoint that ‘this thing is caused by hormonal changes’ and ‘this part is caused by medication’. All of these things melt into one so it’s hard to tell what’s happening to my body. Most of the time the doctors can’t tell.

I tried to ask my doctor if the night sweats could be because of the menopause. He insisted I was too young – even though at 49 I don’t think I am – and just told me to see my gynaecologist. Though he is usually patient, I was a little surprised at how he brushed me off.

There are other ways my progressing Parkinson’s affects me as a woman, urinary incontinence being one. Sometimes I’m too stubborn to wear a pad – I’d rather pee in my pants than wear a big honking mattress between my legs! That just doesn’t feel sexy! I suppose getting old in itself makes you feel a little less juicy but combine that with the symptoms associated with this condition – and the onset of menopause – and it’s fair to say I feel a little more insecure these days. Dating men has made that harder too. As soon as I say I have Parkinson’s, I never hear from them again.

One thing I’ve noticed in Parkinson’s community is how women are openly shamed for experiencing impulse control disorders to do with sex (hyper compulsion being a side effect from our Parkinson’s medication) but when it’s men you hear that phrase: ‘Boys will be boys’. I just think that dynamic is so wrong. I experienced hyper compulsion but in my case it was with cleaning and shopping. I got very intense about cleaning out the closet – my daughter said, ‘Mum, you’ve been cleaning the closet for three days’. These drugs are powerful, and they cause major changes in us. We need more warning about that.

Need to know: Heather Kennedy– whose pen name is Kathleen Kiddo – is a writer, speaker and Parkinson’s advocate who was diagnosed with Parkinson’s in 2011 at the age of 41. She lives with her two children in California, US. Heather is publishing two new books, one on grief and the other a collection of short stories, in the coming year.

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: “My medication only works three weeks out of four”

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