Alex was diagnosed with Parkinson's disease when he was just 11-years-old (BBC
'I felt like I was falling into a black hole'
A mother has revealed what it felt like when her son was diagnosed with Parkinson’s disease at just 11-years-old.
Sarah Hill, from Folkestone, Kent, recalls that her son, Alex, experienced unusual symptoms from the age of eight when he would complain about his legs hurting for days after PE lessons and often dragged one leg whenever he was tired.
But after taking her son, now aged 24, to the GP, her initial concerns were dismissed.
However, as Alex grew older he developed more odd symptoms.
“He didn't want to leave me, even though he loved going to school. He also became quite obsessive. He had to pack loads of pairs of underpants in his bag and we weren't allowed to leave the house without them,” Hill told BBC.
On another occasion she reports that Alex opened his bedroom window and shouted at the birds to shut up.
Concerned about his unusual behaviour, Hill thought he may need to see a psychiatrist and so returned to the GP before being dismissed once again.
Some months later, Alex experienced a fall and his mother noticed he had developed a slight tremor but the GP laughed at the suggestion that he could have Parkinson's disease at such a young age.
Instead, a paediatrician treated him for epilepsy and put him on medication which had no impact.
Around five per cent of people experience symptoms of Parkinson's disease before they reach the age of 40 (BBC)
At this stage, Hill reported that Alex would fall as many as 28 times a day and became so bruised that he would have to lie on his front.
After years of uncertainty, Alex was referred to the Evelina Children's Hospital in London where he was finally diagnosed with juvenile-onset Parkinson’s disease.
A diagnosis that Hill said made her feel like she was “falling into a black hole.”
Within a year, Alex was mostly using a wheelchair and eventually moved to a school for children with special needs while his mother gave up work as a fitness instructor to become his full-time carer.
At the age of 14 he stopped responding to medication and had to undergo surgery to reduce his tremors but, as his condition slowly declined, Hill struggled to cope.
I felt like I was fighting Parkinson's on my own because at Alex's age it's so unusual,” she said.
After much deliberation, she decided it would be best for her and Alex if he moved to a care home down the road.
“It means I can be his mum again, not just his carer. We can play games and have fun,” she explained.
Hill ensures that Alex remains fully involved in family life and makes the effort to visit him every other day as well as making video calls in-between.
Alex describes his mother as “the best mum in the whole wide world” and the pair are hoping to go on holiday to Wales this summer.
While Parkinson’s disease is more common in older people it can affect anyone, with around five per cent experiencing symptoms before they reach the age of 40.
As such, it is vital to recognise the symptoms, of which there are more than 40, including vomiting and changes in mood.
The NHS states that the main symptoms of Parkison’s affect physical movement and can vary from tremors to slowness and muscle stiffness.
In addition it lists balance problems, loss of sense of smell, nerve pain, problems with urination and dizziness as signs to look out for.
If you are concerned you or someone you know may have symptoms of Parkinson’s disease you should see your GP.
https://www.independent.co.uk/life-style/drop-mother-reveals-what-it-felt-like-when-11yearold-son-was-diagnosed-with-parkinsons-og-mother-a8299596.html
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