Charity out to tackle ignorance that can leave Parkinson’s sufferers upset
ONE in 10 people with Parkinson’s disease has been laughed at because of the condition, a leading charity has said.
A staggering lack of public awareness of Parkinson’s is stopping people with the neurological condition from even leaving their home due to embarrassment, according to Parkinson’s UK
he claim was made as the charity marks World Parkinson’s Day today, and it revealed that 78% of people have no idea of the many ways the condition affects sufferers.
While most people are aware of symptoms such as tremor, the majority do not realise it can also cause anxiety, hallucinations and even freezing — a terrifying symptom that can come on without warning and results in a person losing the ability to move.
Parkinson’s i s a condition in which parts of the brain become progressively damaged over many years, and many people lose their sense of smell and taste.
Some experience severe swallowing difficulties, making eating and drinking a struggle, while others suffer depression and anxiety.
Ni a l l Bar t o n f r o m Newt o wnabbe y was d i a g n o s e d with Parkinson’s in 2016 and is plagued by chronic sleep issues.
The 46-year-old joiner, a father to two grown-up children, explained: “I had been to the doctor a few years before as I was having problems with tying my laces, things like that, so they scanned me for a brain tumour.
“That came back clear so I left it for a few years but things were getting worse, so I went back again and the doctor knew within five minutes what it was.
“I have so many different symptoms — stiffness, depression, anxiety, but for me the lack of sleep is the worst.
“I can get to sleep all right but I wake up an hour later and spend the rest of the night tossing and turning.
“By the time I get home in the evening I am absolutely shattered.”
Niall said the difficulties he faces are made worse by the lengthy waiting times for neurology appointments.
His consultant is currently off on long-term sick leave and he is facing an indefinite wait for his next review.
“It does make things hard as the condition is progressive,” he explained. “I can go to the GP but they don’t really know that much about it, so I really need to be seeing my consultant to help me manage my condition.”
Yet, despite the many ways he is affected by Parkinson’s, Niall is planning to run a leg of the Belfast Marathon next month to raise money for Parkinson’s UK to help the charity continue its efforts to search for more effective treatments for those with the condition, and even a cure.
He added: “I am apprehensive about the future, particularly about not knowing how difficult it is going to be.
“I have financial worries too, but I do have treatment options and I remain hopeful there is going to be a cure. Getting a cure would mean so much more than winning the Lottery for my family.”
In an effort to raise awareness, and the many ways it affects people, Parkinson’s UK has launched its #UniteForParkinsons campaign.
The charity has also launched a petition calling for businesses to sign up to workplace training to ensure staff are familiar with the symptoms of Parkinson’s.
Nabeel Gill from Belfast International Airport, which has already pledged its support to the scheme, said: “We are dedicated to ensuring all our passengers get through the security procedures as stress-free as possible.
“This is why it is important that our security staff are educated on passengers travelling with Parkinson’s and how we can make sure we are empathetic to the person’s needs, understand their concerns and have the correct process in place for conducting searches.”
❝ I remain hopeful of a cure... that would mean so much more than winning the Lottery for my family
For more info visit www.uniteforparkinsons.org.