A man who was diagnosed with Parkinson’s in his 30s after struggling to walk had been told he was “too young” to have the disease.
Toussaint Smith, 39, from west London, started to feel physically drained and more clumsy than usual in late 2019.
The father-of-one recalls the left side of his body becoming weak and being unable to move his hands easily, when he was just 33 – but he assumed it was a trapped nerve.
For months he ignored his symptoms, which included stiffness, illegible handwriting, shuffling and walking slowly until he researched it online – the result suggested he had Parkinson’s.
“I googled my symptoms and some of them seemed to resemble Parkinson’s, but I never expected to have it, especially at my age,” he told The Independent.
“I thought it was only older people that had Parkinson’s because there is no awareness around it,” he added.
There are around 1,800 people in the UK living with Parkinson’s under the age of 50, accounting for approximately 1.2 per cent of all cases, according to Parkinson’s UK.
However, it’s even rarer in those aged under 40, with just one or two people in every 100,000 aged 20-29 and four or five people in every 100,000 aged 30-39 diagnosed with the disease, the charity explains.
The neurodegenerative disorder has more than 40 symptoms, from tremors and pain to anxiety, and there is currently no cure. But it can be managed with medication, exercise and physical therapies.
Mr Smith says his symptoms have changed his life dramatically.
“I have to rely on other people now especially when my medication isn’t working at its best. Sometimes I can’t function, and I can’t even walk. I need help doing daily tasks like cooking and I am not allowed to drive anymore,” he said.
After months of not feeling himself, Mr Smith decided to go to A&E where he was referred to the neurology department and had a CT scan.
However, Mr Smith claims a doctor told him they could not “pinpoint the issue” and added “it doesn’t appear to be anything sinister”.
Still unaware that Young-Onset Parkinson’s could occur in people in their 30s and 40s, Mr Smith continued to worry about the cause of his severe symptoms.
It wasn’t until he struggled to sleep for almost six months, a common symptom of Parkinson’s, that he decided to see a private neurologist and movement disorder specialist.
Describing the moment he was diagnosed, he said: “I felt more relieved than anything. It was confirmation that I had been right – there was something wrong.
“This was especially meaningful because both I, at times and many people had assumed I was just down, overly anxious or stressed. Now, I finally knew what I was facing and could put a name and diagnosis to it.”
But Mr Smith is not alone, a 2019 survey of more than 2,000 people for Parkinson’s UK, found almost a quarter of people with the condition were told they were “too young” to have Parkinson’s.
“The main misconception about Parkinson’s that I would like to address is that this is a chronic condition that only affects the elderly and particularly white males,” he said.
Mr Smith also explained that a tremor is only one possible symptom among various physical and mental challenges people with the disease face.
As a young black person living with Parkinson’s, Mr Smith explained he has not seen many examples of people like him, which is why he joined a research group.
“I’m keen to lend myself to research to help others, both within and outside the community and get a better understanding of the condition,” he said.
