Six years ago, aged 42, I was diagnosed with Parkinson’s.
It’s a condition that causes uncontrollable movements that worsen over time – affecting your ability to walk and talk.
I started to notice symptoms when my right hand tremored as I went to switch off the light.
I left it for about a year before it got worse, with the tremors moving to my right leg, and eventually visited my GP. I was referred to a neurologist who suggested it was early onset Parkinson’s.
After about a year, my right foot started to drag while I was walking. I was eventually formally diagnosed in 2017 after a DaTscan – a brain imaging scan.
It felt unfathomable, I was in my early forties. I was devastated, thinking that Parkinson’s was an old man’s disease – certainly not for a young mother like me. I felt like my life as I knew it was over. But the worst was yet to come.
While I was prescribed medication to help with increasing stiffness and episodes of ‘freezing’ – feeling completely stuck – about three or four years ago, my periods became infrequent, then stopped fully about a year ago.
I started to feel more and more anxious, depressed, had hot flushes, the sweats and serious brain fog. All common symptoms of the menopause, right?
But was it linked to, or as a result of, my diagnosis? No one could tell me – or even wanted to know.
Though the menopause was common at my age, I hadn’t a clue if my neurological condition was speeding up or slowing down my menopausal state, or how it would interact with my condition. I felt completely lost, like I didn’t know myself.
Since then, not once have I ever been told about how the various medications I’m on for my condition could affect my body. How Parkinson’s could affect my hormones and periods. Doctors didn’t know – and the simple fact that no healthcare professional has ever asked about the correlation between them is outrageous.
It’s scary not knowing, not being guided or helped by the people who are supposed to care for me.
When I was eventually advised to give HRT a try, I remember asking about it potentially conflicting with my Parkinson’s medication. I was met with a blank stare and a ‘I don’t think so’ from my (male) GP, advising me to just carry on and ‘see how it goes’. That, or speak to my Parkinson’s consultant at the hospital – who in turn told me to speak to my GP. It’s a vicious, infuriating cycle, which is costing my wellbeing.
It’s almost as if no professional knows, or cares, that my Parkinson’s could be drastically affecting my hormone levels.
I can’t lie, there have been times where I’ve considered going private – despite my great belief in the NHS.
Now I’m on my third type of HRT in as many months, the other types were ineffective or tricky to use with a tremor, like patches or gel, and I am still in the dark of the implications of it on my Parkinson’s – and vice versa.
Waved off by professionals as something to just deal with in silence. It’s exasperating.
I’ve had to do my own research, join Facebook groups, forums and read countless studies online. I’ve learned that there could be significant issues relating to worsening of Parkinson’s symptoms and hormone imbalance through menopause, and have relayed these concerns to my healthcare professionals in attempts to ask for guidance – but it’s them who are meant to be helping me. Not the other way round.
Menopausal women have always been treated like second-class citizens. Fobbed off as hysterical, and left to fend for themselves – major HRT shortages hitting headlines as recently have proved it.
Menopausal women are an enigma, with suggestions of modern treatments or solutions dismissed by doctors who, quite frankly, don’t have a clue.
To say it infuriates me is an understatement.
And in the last year, my Parkinson’s has accelerated – I have the memory of a 88-year-old, not a soon-to-be 48-year-old, and my tremors have got much worse to the point where my life is drastically having to change.
I have to sleep most afternoons now, as I’m so tired and both my kids, aged 13 and 18, and husband have to help around the home. I used to run half marathons, and was really creative – but now I’m not even 50 and I just feel helpless.
I wonder if my symptoms are linked to perimenopause, or exacerbated by HRT – but I do not know. Nor will I ever find out as no one seems to want to help.
I’m having to look after myself and it makes me wonder how many women like me there are out there. Ignored, frustrated, and vulnerable. Angry.
Still, I am hopeful. I continue to try to exercise and eat well, and I have found some amazing groups online who share my concerns, too. Their support is comforting, at least.
Now, I’m trying a new combination of medication to try to manage my ‘on’ and ‘off’ episodes more effectively – and I’m determined to keep chipping away at my GP, stressing the importance of being acknowledged and listened to.
But the sheer lack of knowledge, or interest, in how my Parkinson’s may or may not be affected by the menopause is absolutely astounding. It baffles me.
There’s misogyny in the health service, and it leaves us desperate for answers.
As told to Emmie Harrison-West
Are you concerned about Parkinson’s?
Support is available for everyone affected by Parkinson’s on the Parkinson’s UK website, www.parkinsons.org.uk and via the free, confidential helpline (0808 800 0303) and online forum
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