I put my aching arm and throbbing foot down to my busy life. Then I was told I had Parkinson's despite being under-50. This is how the young-onset version of the disease is on the rise... and the signs you cannot ignore

As an active young mum, Shafaq Ali was mystified when she started tripping over at random in the street.‘My leg would randomly give way and suddenly I’d be on the floor,’ says Shafaq, 47, a dentist.Her GP put it down to a tendon injury and recommended support stockings to provide support for her ankle – and, for a couple of years, it seemed to help.But it was just one of a cluster of symptoms that dogged Shafaq from her 30s onwards.First came the throbbing pain in her right foot whenever she pressed the pedal to recline the treatment chair in her dental consulting room.‘I put it down to overuse,’ says Shafaq, who lives in Yorkshire with her husband, Ased, 48, a urological surgeon, and their two children, aged 19 and 17.Then came fatigue so extreme she had to drag herself out of bed every morning. She also felt ‘disproportionately’ anxious about everyday things, to the extent that last-minute changes in plans could send her mood spiralling.‘I felt this tremendous apathy and anxiety – and just wondered how all the other working mums did it,’ she says. When Shafaq Ali, 47, experienced extreme fatigue and anxiety, she initially put it down to being a busy working mother. But it took ten years for her to learn that it was in fact Parkinson’s‘I worked extra hard to be a good mum, but it left me feeling drained. I seemed to be physically slowing down.’It would take ten years from first having her problem with her foot for Shafaq to finally get a diagnosis. And when it came, it was devastating.‘It was Parkinson’s disease – a condition that nobody in my family ever had,’ she says.Shafaq was shocked, not least because at the time, aged 41, she believed she was ‘too young’ to develop it.In fact while Parkinson’s, a progressive neurological condition, typically affects people aged between 50 and 65, up to 7 per cent of the 166,000 with the condition in the UK – more than 11,000 people – have young-onset Parkinson’s, which is diagnosed between ages 20 and 49.And recent research suggests the incidence of young-onset Parkinson’s is becoming significantly more common worldwide, with cases more than doubling from 1990 to 2021, reported the journal npj Parkinson’s Disease. (Exactly why is unclear, although theories include better detection, stronger genetic links in younger groups and heavier exposure to environmental toxins such as pesticides.)Parkinson’s is caused by build-up of a misfolded protein in the brain that destroys brain cells which make dopamine, a chemical transmitter, that controls movement – as well as the reward and motivation centre of the brain.Without adequate dopamine, movement can become slow and jerky and mood and energy fall too.While Parkinson’s is most closely associated with a tremor or having stiff and tight muscles, there are more than 40 possible symptoms of it including apathy, anxiety and depression, cramping muscle pain, sleep problems, falls, dizziness, dyskinesia (involuntary movement), freezing (where you suddenly can’t walk or step forward). Even constipation and loss of sense of smell are red flags for the condition. Although Parkinson’s is most commonly associated tremors, the young-onset version of the disease has different symptoms, including muscle cramping and depression But symptoms can be slightly different in young-onset Parkinson’s, says Dr James Gratwicke, a consultant neurologist at the private HCA London Bridge.‘One of the very common symptoms in younger people is dystonia (abnormal contraction of muscles) – muscles tense up and cramp badly and this will very often be one of the first symptoms.‘There is also a higher likelihood in younger people of psychiatric symptoms caused by the Parkinson’s, such as apathy, anxiety and depression.‘Dopamine is not only used in movement, but in other brain circuits that are involved in behaviour and emotional regulation, too – so if it is short supply, these are affected.’Younger people are less likely to have balance problems.When Shafaq developed pains in her right arm aged 35, she thought it was due to repetitive movements.‘The muscles in my hand and forearm would throb from time to time and sometimes cramp,’ she recalls.‘I thought it was overuse again, as I’m a dentist and used my right arm all the time.’She went to her GP who ran blood tests that found nothing more than a slight vitamin D deficiency, for which she was advised to take supplements.But when the symptoms continued, she was referred for physiotherapy to strengthen muscles in her arm. It too helped a little, but didn’t fix the problem.By 2018, aged 39, Shafaq realised she could no longer control the computer mouse with her right hand. Nor could she do up buttons, type on a keyboard or use a phone easily.‘Even my handwriting became messier and smaller.' Changes in handwriting are a ‘textbook feature of Parkinson’s – it typically becomes smaller and starts slanting down the page – this a reflection of the lack of dexterous movement in the hand,’ explains Dr Gratwicke. Consultant neurologist Dr James Gratwicke says changes in handwriting, for example slanting, are another warning sign, as it reflects the lack of dexterous movement common in Parkinson'sBy now, Shafaq also had a slight but persistent tremor in her right arm – though not enough to affect her at work.She admits looking back at old video footage of her kids and seeing her right hand shaking while holding the camcorder.‘I can actually hear myself saying, “I don’t know why my hand is shaking”, and switching over to my left hand,’ says Shafaq.‘The clues were there but I didn’t connect all the symptoms and neither did my doctors, mainly because I was so young.’Shafaq’s husband, Ased, was the first to join the dots and suggest she may have young-onset Parkinson’s.The couple agreed to go to the GP together and ask the question in May 2019.When they listed all her symptoms – tremor, muscle pain, falls, slow movement, sleep problems and loss of fine motor skills – the GP agreed to refer her to a neurologist, who confirmed the diagnosis based on a DaTscan test, which helps identify if there is a lack of dopamine in the brain.The most common risk factor for this is ageing, but there are others says Simon Stott, director of the charity Cure Parkinsons, including exposure to pesticides, air pollution and even noise pollution for those living near busy roads.A recent study published in JAMA Neurology from Denmark involving three million people found that long-term exposure to traffic noise was associated with a higher risk of the condition.Simon Stott says young-onset Parkinson’s is often missed because doctors think patients are unlikely to have it at such an early age.‘Doctors will explore lots of other possible options before reaching a diagnosis of Parkinsons,’ he says. ‘Part of the problem is there is no biological diagnostic test [such as a blood test], so diagnosis is still a clinical decision by a neurologist.’Shafaq says: ‘My initial reaction was, "Gosh it’s real". Strangely I wasn’t upset or tearful, I’m quite pragmatic and stoic by nature. I thought, at least I’ll live to see my children grow up.’ Despite taking levodopa (a drug treatment) Shafaq was forced to give up her job as a dentist, because she didn't want to put patients at risk as her fatigue and tremor worsened She was prescribed levodopa (a synthetic dopamine replacement therapy), one of the two main drug treatments for Parkinson’s, which she had to take three times a day.It isn’t a cure but can help reduce symptoms – although it tends to become less effective over time.Younger patients are sometimes prescribed a different class of drugs called dopamine agonists (pramipexole, ropinirole and rotigotine), which are taken once daily and longer acting – reducing the risk of side-effects such as impulse control disorders, including gambling, shopping and pornography addictions – and which can also affect those on levodopa – because of the less frequent dose.Shafaq says: ‘Levodopa worked like magic at first; it controlled the tremor really well, and I got my energy back. At age 41, I felt like I should have done in my early-30s.‘But two years in, I started to need larger doses to control my symptoms – and by five years doctors had to double the dose and prescribe a slow-release tablet for overnight.’She says that having to give up her job as a dentist, as she feared her fatigue and tremor were worsening, and she wouldn’t ever put patients at risk, ‘broke my heart and broke me as a person’.‘My job was my vocation and whole identity – it was devastating for me.’Dopamine now only controls her symptoms for three hours at a time, and she still has severe pain in her right foot. But she remains optimistic about the future.Simon Stott says the search for a drug to stop the disease in its tracks goes on – and hundreds of potential candidates are being investigated.One promising prospect is a cough medicine called ambroxol, which seems to slow progression by boosting levels of an enzyme known to clear waste products that have gathered in brain cells. Clinical trial results are due next year.Dr Gratwicke says exercise can make a real difference and recommends walking, cycling and swimming.A 2019 study in The Lancet Neurology found Parkinson’s patients who completed 30 to 45 minutes of aerobic exercise three times a week had slower progression of the disease than those who remained sedentary.Shafaq says: ‘Sixteen years on and I’m still doing okay. Exercise really helps me – I do Pilates, Kung Fu, physio and walking. I’ve become a passionate patient advocate and have signed up for multiple clinical trials – and am determined about finding a cure for Parkinson’s.‘My message is, just because you are young doesn’t mean you can’t get Parkinson’s.’cureparkinsons.org.uk