Annmarie O'Connor: When menopause and Parkinson's overlap, you don't know which to blame

Parkinson’s is unpredictable. Add menopause to the mix and deciphering what’s happening in my body becomes a daily detective exercise, Annmarie O'Connor writes

Annmarie O'Connor on Parkinsons, five years on. Picture: Chani Anderson

I am post-menopausal. My sex hormones liquidated around December 2024, just before Christmas. Business was slow. Although delighted not to have a period and its attendant palaver (see: cramps, tampons, fear of wearing white), the monthly benchmark was crucial to my well-being as a person with Parkinson’s. Here’s why.

Early in my diagnosis, I experienced what I thought was a spike in my symptoms. After a chat with the Parkinson’s Ireland nurse, I discovered that wasn’t exactly the case.

She explained that falling levels of oestrogen before ovulation and menstruation can eat into already low levels of dopamine, causing a temporary speed wobble. Once oestrogen levels rise, it’s business as usual.

Knowing this was life-changing. My monthly cycle teetered between seven and 17 days, which made any sort of planning a challenge. So, I made an appointment with my GP to start HRT and regulate my periods. As I was already experiencing perimenopausal symptoms like hair loss, restless legs, and insomnia, it made sense. Twenty-eight days later, my cycle was back on track. This meant I could ringfence the sketchy days when oestrogen was at its lowest and optimise my schedule accordingly.

It is said that “man makes plans and God laughs.” I’m guessing ‘women make plans, and God gives them menopause’ wasn’t a big hit in the old adage marketing department.

As a woman in midlife, you expect some hormonal drama; nothing quite prepares you, though, when you also have Parkinson’s. Each condition, you see, has over forty symptoms, many of which are remarkably similar and read like medical Cluedo. You never know which one is to blame.

Was it menopause in the bedroom with the night sweats and fatigue? Or Parkinson’s in the bathroom with the anxiety and gut issues?

Here’s the sticky wicket. Those night sweats may be hormonal. They may also be a Parkinson’s phenomenon, known as ‘off’: A period when medication isn’t working optimally or needs to be tweaked. Learning which of the two culprits is responsible is a process of deduction, one that requires getting facts from medical professionals like your GP and consultant, not from wellness gurus or TikTok shop.

Magnesium, for the record, is not a cure-all; in many cases, it is paid, user-generated content.

This is why people with Parkinson’s track everything. Tracking gives you data. Data gives you predictability. Predictability gives you agency. I am the expert on my own body, I remind myself, even if it is running two glitchy operating systems at once. Speaking of which… I may be post-menopausal, but that doesn’t mean I’m in the clear. Far from it. New variables have entered the chat: Increased fatigue, greater stiffness, and more pain.

Oh, and dryness. Dry eyes, dry hair, dry skin, dry vagina. I was none the wiser about the latter (I told you, business was slow) until a recent smear test. Here’s how it went.

Annmarie O'Connor: As a woman in midlife, you expect some hormonal drama; nothing quite prepares you, though, when you also have Parkinson’s. Picture: Chani Anderson

The nurse informs me it might be a bit sore. She offers lubricant. I take it. Why not? One swab, four seconds. I know the drill. Or so I thought. I howl aggressively — a piercing guttural shriek — as if the banshee herself were keening from my womb. After pulling up my jeans and offering a bashful apology, I do the walk of shame past a row of patients in the hallway. So, my vagina now feels like sandpaper. I can handle that. I now have to pay at reception. How far does sound travel?

Back to the stiffness and pain. I typically wake up before six in the morning with both symptoms as my alarm clock.

It’s not unusual for a 53-year-old woman with Parkinson’s disease, but here’s the difference. My toes make strange configurations: A precursor to dystonic foot spasms. Panicked. Tangled in bedsheets. I loosen myself from a 300-thread-count chokehold. Once my feet reach the carpet, I can work out the kinks. A pre-emptive strike. Instead, I am struck with exquisite pain. Stymied by a sadistic alarm clock and a rogue weighted blanket. I twist and turn, stifling expletives and holding back tears. Finally free, I try walking; the soles of my feet smart with each step. ‘Good morning’ feels less like a greeting and more like a reminder to take my meds. All I want now is a cup of coffee and a 10-minute doomscroll. Afterwards, I make a note on my phone. I track. Soon, a profile develops. Discernible regularity emerges. Evidence. It was Parkinson’s in the bedroom with dystonia! Further investigation will determine how to treat it, but for now, case closed.

For now. Because it’s never actually over, is it? Parkinson’s, the ultimate shapeshifter, doesn’t stay caught. It allows you the illusion of control before reminding you it is progressive and incurable. That’s why we listen. We stay alert. Attuned to our body’s behaviour. Noting anomalies. Finding similarities. Knowing all the while that Parkinson’s will present differently next time. That’s its pattern. Still, we track. Leaving voice notes in a folder marked PD: A collection of times and crimes to nail the suspect. Post-it reminders decorate the refrigerator door with potential clues about last night’s restless legs. Every move is plotted. Every script dissected.

And so, I open a fresh notebook, break its spine, and get to work.

• Annmarie O'Connor's memoir Twitch: My life with Parkinson's is available now. Annmarie's five-part series on living with Parkinson's continues next week.