Aid for patients trapped in body
MOTOR neurone disease can render a person paralysed – locked in a body where they can feel every itch but cannot scratch.
The speed of the condition taking hold causes costs to rocket, especially when patients become unable to work, leaving families to either spend vast quantities of money or simply go without.
Zeb Nassar, 48, was diagnosed with motor neurone disease in 2016. Her financial struggle with the disease began when she fell down the stairs on her way out of her flat in London, and was unable to convince the council to provide her with a stairlift. She was unable to leave her flat for eight weeks, for fear of falling.
Nassar began to suffer from depression. “I sat on this chair all day long. I just lost interest.
“Eventually St John Ambulance would bring me down from this property for £348 (R6 000). I went down 20 steps on my bum.”
Issues with diagnosing MND are common. Ammar Al-Chalabi, a professor of neurology at King’s College London, explains the difficulties that doctors have when faced with the symptoms.
“Motor neurone disease takes about a year to be diagnosed on average.
“Although MND will kill one in every 300 people, the average GP sees just one person with it in their working lifetime, and so they exclude other similar conditions first. There is no diagnostic test, so the doctor has to go through a process of elimination, which takes time. Because it is a devastating diagnosis to receive, doctors will wait until they are very certain before the possibility is mentioned.”
According to research published by think-tank Demos – commissioned by the Motor Neurone Disease Association – the average patient and their family spend almost £12 000 (R204 000) a year on their condition – one-off purchases (home adaptations), regular expenses (such as care, or additional help around the home) and enhanced costs (such as increased energy bills or travel insurance).
Susie Rabin, head of policy and campaigns at the association, said the huge bills can cause huge amounts of stress for families who are already under financial strain.
Susan Graham started her non-profit organisation Jaspal’s Voice in memory of her sister, who died after a 10-year battle with the disease. Her goal is to tackle issues with communication devices for patients who cannot speak anymore.
“The National Health Service provides expensive equipment but some patients pass away before being supplied with any.”
After watching Jaspal lose her voice only a year after diagnosis, Graham was struck by the devastating consequences for someone so sociable. Eventually, Jaspal could communicate only by using a large key pad, where she would use predictive text to communicate.
She sent a simple text reading “goodbye” hours before she died. Jaspal’s use of predictive text inspired Graham to create an inexpensive app to suit other patients with MND needs.
MediVoice is an app that has a large numeric keypad, which allows for easy predictive texting for those with limited hand movement. It is designed for ease and efficiency, but is also vital when a patient can’t speak.
June is Motor Neurone Disease Awareness Month. – The Independent
‘I sat on this chair all day long. I just lost interest’
RUGBY LEGEND: Joost van der Westhuizen died of MND.