Too many women like Kirsten are told symptoms are the menopause when they really have Parkinson's. Now doctors are urging action... and say early diagnosis is the key
For years mother of two Kirsten Macpherson struggled to get out of bed, suffering from severe muscle stiffness and an overwhelming feeling of anxiety.Aged in her late 40s, she knew something wasn’t right but doctors repeatedly said her symptoms were caused by the menopause, reassuring her that medication would make it easier.Things got steadily worse; eventually she was on the maximum dose of HRT, antidepressants and painkillers but nothing eased her day-to-day struggle.‘I will never forget when me and my family really knew something was wrong,’ says Kirsten. ‘It became known as pancake-gate in our house.’ She recounts her husband Steve coming through the door to her and their two children, Fraser and Freya, then 13 and 16, making a mess in the kitchen cooking pancakes together.‘When Steve asked me what was going on, I just couldn’t get the words out – I stumbled, I tremored and fumbled over my words,’ said Kirsten. ‘I was trying to say “pancakes are in full swing” but I just couldn’t get it out... Normally they would laugh and say I was ditsy but everyone was silent – they knew something was wrong.’Another trip to her GP followed and after explaining that she now had a tremor Kirsten was instantly referred to a neurologist – at the eighth time of asking. Kirsten Macpherson, who was told by doctors that her early Parkinson's symptoms were part of the menopause, with her children Freya and Fraser and husband Steve The mother of two believes she would have suffered less if GPs knew more about how the disease presents in womenIn 2023 tests finally revealed the cause of her myriad health issues: Kirsten had Parkinson’s, a degenerative neurological disease. ‘I was in complete shock – I just didn’t think that women my age could get Parkinson’s,’ said the now-retired dentist.‘It has been really hard to come to terms with. I have had to grieve the life I thought I would live; will I see my kids grow up and get married? Will I have grandchildren? Will I need to be pushed around in a wheelchair?’Worryingly, Kirsten’s story is far from unique. Experts warn that thousands of women with Parkinson’s are going undiagnosed – largely because their symptoms present differently to men’s.Now, speaking to The Mail on Sunday, researchers, MPs and the UK’s leading Parkinson’s charity are calling for urgent updates to NHS guidance to ensure women are diagnosed and treated appropriately. The condition, which affects nerve cells in the brain that control movement, is often wrongly assumed to affect men and women in the same way – a misunderstanding that may be ruining lives, they say.‘An early diagnosis is really important for patients as starting them on treatment as soon as possible will improve their quality of life,’ says Dr Daniel van Wamelen, an expert in Parkinson’s at King’s College London.‘And although we do not have drugs to reverse symptoms just yet, it is likely we will in the coming years, and it will be vital that we are able to diagnose early so these are effective.’Kirsten says life was ‘unbearable’ before her diagnosis: ‘It was horrible not knowing what was wrong with me. I just could not function day to day, and I was having to hide my symptoms at work.’ Kirsten with the Parkinson's Pioneers, a football team for people with the conditionParkinson’s is a progressive neurological disorder – second only in terms of prevalence to Alzheimer’s disease. It’s estimated that 168,000 people in the UK live with Parkinson’s, with 50 diagnoses every day.The condition occurs when brain cells responsible for producing dopamine – a chemical vital for controlling movement – become damaged and die. The exact cause isn’t fully understood, but it’s thought to involve a mix of genetic and environmental factors.Symptoms typically include tremors, stiffness, slowed movement and balance problems – though these can vary widely, particularly between men and women.While NHS data shows that four in ten Parkinson’s patients are women, some experts believe this figure may underestimate the true number due to misdiagnosis.Women’s symptoms can present less visibly – and are more likely to be mistaken for anxiety, menopause, or other conditions. ‘There is a theory that the female sex hormone, oestrogen, offers some protection against the disease, which is why we see cases [in] menopausal women when these levels drop,’ says Dr van Wamelen. ‘Because of the potentially protective nature of this hormone it means the disease progresses slower in women, which is why cases are not being picked up.’Read More Doctors issue warning over mystery rise of young, fit women with crippling medieval condition Kirsten says medication has helped to reduce some of her symptoms ‘but there are still days when I feel that I just can’t do anything... I was able to soldier on for a few years at work, but eventually I had to quit.’She takes the dopamine-boosting drug levodopa daily and has joined a football group for people with Parkinson’s to stay active.Kirsten believes she would have suffered less if GPs knew more about how the disease presents in women. ‘We hear a lot from women that struggle to be referred to a specialist and are told that it is just “women’s troubles”,’ says Claire Bale of Parkinson’s UK. The charity added: ‘We need to see a change in guidance – it would make a massive difference to women’s lives.’Lib Dem MP Alison Bennett recently asked the Government if it planned to act on the issue, but health minister Ashley Dalton said there were no plans to update guidance. ‘It showed that they do not have a good handle on this [issue],’ said Ms Bennett.A spokesman for the National Institute for Health and Care Excellence said: ‘We regularly review and update our guidelines and take a proactive approach if there is new evidence that is likely to change the recommendations if there is new evidence.’ Signs of the disease Early Parkinson’s symptoms can be subtle, meaning people often do not see a doctor until the disease has advanced, experts warn.The signs include a reduced sense of smell, depression, anxiety, tiredness and constipation.Studies have shown that micrographia (when your handwriting shrinks) can also be an early symptom.One that is often mistaken for a cold is a change in the voice, either becoming softer or more hoarse.Other symptoms include changes to motor functions that affect movement and balance, such as tremors, stiffness and slowness.
