As an active young mother, Shafaq Ali was stunned when she randomly stumbled on the street.
“My leg gave out randomly and suddenly I was on the ground,” said Shafaq, 47, a dentist.
Her doctor put it down to a tendon injury and recommended compression stockings to support her ankle – and for a few years it seemed to help.
But it was just one of the symptoms that haunted Shafaq from the age of 30.
First came the throbbing pain in her right foot every time she pressed the pedal to recline the dental chair in her dental office.
“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 the fatigue got so extreme that she had to drag herself out of bed every morning. She also felt “disproportionately” worried about everyday things, to the extent that last-minute changes to her plans could send her mood into a tailspin.
“I felt enormous apathy and fear – and wondered how all the other working mothers were doing,” she says.
When Shafaq Ali, 47, suffered from extreme fatigue and anxiety, she initially attributed it to being a busy working mother. But it took ten years before she discovered that it was indeed Parkinson’s
“I worked extra hard to be a good mother, but it left me feeling exhausted.” I felt like I was slowing down physically.”
It would be ten years after Shafaq’s first foot problem before she finally received a diagnosis. And when it came, it was devastating.
“It was Parkinson’s disease, a condition that no one in my family has ever had,” she says.
Shafaq was shocked, not least because at the time, at 41, she thought she was ‘too young’ to develop it.
Although Parkinson’s, a progressive neurological condition, usually affects people aged between 50 and 65, up to 7 per cent of the 166,000 people with the condition in Britain (more than 11,000 people) have early-onset Parkinson’s disease, diagnosed between the ages of 20 and 49.
And recent research suggests that the incidence of early-onset Parkinson’s disease is becoming significantly more common worldwide, with the number of cases more than doubling between 1990 and 2021, according to 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 the buildup of a misfolded protein in the brain that destroys brain cells that produce dopamine, a chemical transmitter that controls movement – as well as the brain’s reward and motivation center.
Without enough dopamine, movements can become slow and jerky, and mood and energy can also decrease.
Although Parkinson’s disease is most commonly associated with tremor, or having stiff and tight muscles, there are more than 40 possible symptoms, including apathy, anxiety and depression, cramping muscle pain, sleep problems, falls, dizziness, dyskinesia (involuntary movements), freezing (where you suddenly become unable to walk or step forward). Even constipation and loss of sense of smell are warning signs of the condition.
Although Parkinson’s disease usually involves tremors, the young version of the disease has a variety of symptoms, including muscle cramps and depression.
But symptoms can differ slightly in early-onset Parkinson’s disease, says Dr James Gratwicke, consultant neurologist at the private HCA London Bridge.
‘One of the common symptoms in younger people is dystonia (abnormal contraction of muscles) – muscles tightening and cramping very much, and this will very often be one of the first symptoms.
‘There is also a greater risk of psychiatric symptoms caused by Parkinson’s disease in younger people, such as apathy, anxiety and depression.
‘Dopamine is used not only in exercise, but also in other brain circuits involved in behavior and emotional regulation – so when there is a deficiency, these are affected.’
Younger people are less likely to have balance problems.
When Shafaq started experiencing pain in her right arm at the age of 35, she thought it was due to repetitive movements.
“The muscles in my hand and forearm would throb and sometimes cramp from time to time,” she recalls.
“Again I thought it was overuse since I’m a dentist and used my right arm all the time.”
She went to her GP, who did blood tests and showed nothing other than a mild vitamin D deficiency, for which she was advised to take supplements.
But when the complaints persisted, she was referred for physiotherapy to strengthen the muscles in her arm. It also helped a little, but didn’t solve the problem.
In 2018, at the age of 39, Shafaq realized that she could no longer control the computer mouse with her right hand. She also could not easily operate buttons, type on a keyboard, or use a telephone.
“Even my handwriting became sloppier and smaller.” Changes in handwriting are a hallmark of Parkinson’s disease – it typically becomes smaller and begins to slope downwards – this is a reflection of the lack of dexterous movements of the hand,” Dr Gratwicke explains.
Neurologist Dr. James Gratwicke says changes in handwriting, for example slanting, are another warning sign because it reflects the lack of dexterous movements that is common in Parkinson’s.
Meanwhile, Shafaq also had a mild but persistent tremor in her right arm, but not enough to affect her at work.
She admits that she looks back on old video footage of her children and sees her right hand shaking as she holds the camcorder.
“I actually hear myself saying, ‘I don’t know why my hand is shaking,’ and then switching to my left hand,” says Shafaq.
“The clues were there, but I couldn’t connect all the symptoms, and neither could my doctors, especially because I was so young.”
Shafaq’s husband, Ased, was the first to join the dots, suggesting she may have early-onset Parkinson’s disease.
The couple agreed to go to the doctor together and pop the question in May 2019.
When they listed all her symptoms – tremors, muscle pain, falls, slow movements, 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 determine whether there is a deficiency of dopamine in the brain.
The most common risk factor for this is aging, but there are others, says Simon Stott, director of the charity Cure Parkinsons, including exposure to pesticides, air pollution and even noise pollution for people 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 early onset Parkinson’s disease is often overlooked because doctors think patients are unlikely to develop it at such a young age.
“Doctors will explore many other possible options before diagnosing Parkinson’s,” he says. ‘Part of the problem is that there is no biological diagnostic test [such as a blood test]so the diagnosis is still a clinical decision by a neurologist.”
Shafaq says: ‘My first reaction was, “Gosh, it’s real.” Strangely enough, I wasn’t upset or in tears; I am 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 did not want to endanger patients as her fatigue and tremors worsened.
She was prescribed levodopa (a synthetic dopamine replacement therapy), one of the two main drug treatments for Parkinson’s disease, to take three times a day.
It is not a cure, but can help reduce symptoms – although it becomes 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 a day and work longer – reducing the risk of side effects such as impulse control disorders, including gambling, shopping and pornography addictions – and which may also affect those taking levodopa – due to the less frequent dosing.
Shafaq says, “Levodopa worked like magic at first; it controlled the quake very well, and I got my energy back. At 41, I felt like I should have done that in my early 30s.
‘But after two years I started needing larger doses to control my symptoms – and after five years doctors had to double the dose and prescribe a slow-release tablet at night.’
She says that giving up her job as a dentist because she feared her fatigue and tremors would worsen, and that she would never endanger patients, “broke my heart and broke me as a person.”
“My job was my calling and entire identity – it was devastating to 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 continues – with hundreds of potential candidates being investigated.
One promising prospect is a cough medicine called ambroxol, which appears to slow progression by increasing levels of an enzyme known to remove waste products that have built up in brain cells. Clinical trial results are expected 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 that Parkinson’s patients who did 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 later, I’m still doing well. Exercise really helps me – I do Pilates, Kung Fu, physio and walking. I have become a passionate advocate for patients and have enrolled in multiple clinical trials – and am determined to find a cure for Parkinson’s.
“My message is: just because you’re young doesn’t mean you can’t get Parkinson’s.”
Cureparkinsons.org.uk
