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What happens when the brain cannot communicate with the muscles in our body and where do those lost message go ?
Why does motor neurone disease became so aggressive in such a short time and how can technology and medicine extent or improve the quality of life for all those people who have been diagnosed with this condition .
Over the last decade there have been major improvements in MND patient care . Also rapid scientific advances with rational therapies based on key pathogenic mechanisms now seem plausible. ALS is strikingly heterogeneous in both its presentation, with an average one-year delay from first symptoms to diagnosis, and subsequent rate of clinical progression.
Although half of patients succumb within 3-4 years of symptom onset, typically through respiratory failure,
a significant minority survives into a second decade. Although an apparently sporadic disorder for most patients, without clear environmental triggers, recent genetic studies have identified disease-causing mutations in genes in several seemingly disparate functional pathways, so that motor neuron degeneration may need to be understood as a common final pathway with a number of upstream causes.
Sometimes lives get tossed around and left labelled with the word disabled tagged on a wrist . People with motor neurons disease are labelled MND and this cruel condition are left wondering why their muscles stop working .
What happens when the brain cannot communicate with the muscles in our body and where do those lost message go ?
”These patients are in a dreadful circumstance – unable to communicate , unable to mobilise, with their cognition intact , their vision intact, their hearing intact ,their senses intact , unable to talk .”
Is there any way we can find out where lost messages go ?
Using his self taught computer cod-writing skills , Peter Ford now travels the globe helping extremely physically disabled people communicate with the world . Peter is the founder and CEO of Control Bionics, a neural systems technology company, and the inventor of NeuroSwitch, an EMG (electromyograph) based communications and control system for people with profound disabilities including Locked in Syndrome. NeuroSwitch Liberator enables a person with quadriplegia and loss of speech to control a computer, communicate with text and text-to-speech (TTS) and control environmental systems, television, video, music and other personal media, internet access, emails, games and SMS (mobile texting).[2] The NeuroSwitch System's patented control software runs with Apple-based telepresence, providing immediate client service with live remote telemetry monitoring, and live remote support of a user's Liberator programs and hardware.
One of the people Peter was assisting was Nadine who had been diagnosed with MND . In an attempt to seek out those lost messages Peter Ford uses a device called Neuroswitch and Peter explained the process in searching for a signal pathway with Nadine on the Australian Story TV series on the ABC.
“The first thing I wanted to know is if she could send a signal to a muscle , even if the muscle wasn’t functional . When a nerve passes a command from the brain to the muscle ,that sets up an electrical change across the muscle which can be measured with little sensors .And so that sends a signal to the computer and the Neuroswitch software reads that signal .And if she gets an ‘on’ signal when we wanted to make it ‘on ’ the entire framework goes red – so its pretty clear
Fact is not a Cul De Sac we live on . It has been documented by Motor Neurons Disease Australia that the fact is there is no cure for MND yet research has shown Riluzole can be prescribed by a neurologist initially and then by a general practitioner. The effects of that probably prolongs median survival by two to three months (median is the mid point – half those taking riluzole have survival prolonged by more than two to three months) and it may slow disease progression , it may keep people in the milder stages of disease for longer, thus contributing to quality of life .
Better understanding and ways to improve the quality of life for people with Motor Neurons Disease can be found with Relaxation techniques that help to relieve anxiety and have been of great value to many people with MND, especially those with breathing or swallowing problems .
Electrically operated beds and chairs are useful and special cushions
and mattresses provide extra padding, particularly when someone has lost weight . Applying heat: Warmth can help relieve pain. Assessing Alternative treatments like Acupuncture can help relieve pain .
Summing up the advancements in research , technology and medicine the new developments in understanding motor neurons disease is gradually removing the tag disabled and looking at ways of how to improve MND .
By Paul McCann
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