The Nivison family are currently battling a terrifying and rare condition - Guillain Barre Syndrome (GBS).
One day last month Felicity ‘Fid’ Nivison felt pain and paralysis in her hands and feet, then her legs and was diagnosed with GBS at Tamworth Hospital. Within 36 hours the paralysis had worked its way up her entire body to her eyes, and she is currently in the Intensive Care Unit receiving treatment for the condition. GBS sufferers can take up to two years to recover, the cause is unknown, and there is no cure.
“We are so lucky with Tamworth Hospital and the fact that they have dealt with this before on numerous occasions,” said Mrs Nivison’s brother Ross Ford.
“If patients are not treated in time it can be fatal, and the quality of care in Tamworth is absolutely astounding. We feel that she is getting better care there than she would in a big city hospital where you’re a number in an ICU ward. In Tamworth, you get much more personal attention and the fact you’ve got a group of people who are used to dealing with it makes a huge difference.”
A Ford family connection has now led to the use of leading electroneuromyography (EMG) to help Fid communicate with her carers. A small wireless sensor called the NeuroNode is placed on the skin around her eyes, and when she attempts to move that muscle, it detects her bioelectrical signals and uses the signals to control a computer. Commonly used for Motor Neuron sufferers and others with brain stem injuries, this is the first time NeuroNode has been used for GBS patients in Australia.
The founder of Control Bionics who developed the NeuroNode (and the technology behind it which helped the late Professor Stephen Hawking communicate with the world) is Peter Ford, the cousin of Fid and Ross.
Fid’s family are now helping to raise money for the GBS Foundation of Australia to buy NeuroNodes for others dealing with the severe form of GBS, including a three-year-old boy in Sydney Children’s Hospital who has been paralysed and unable to communicate with his family since August 2016.
Ross said because GBS is such an unknown condition, and Fid has one of the most severe forms with only slight movement around her eyes, they wanted to try the NeuroNode.
“The developers have only just recently started working on using the muscles that control the eye and they haven’t got a lot of data on it at this stage,” he said.
“We knew we had Fid looked after through the family and I approached the GBS Foundation of Australia to see how we could go about raising money to buy units for other sufferers that would also give give Control Bionics more data on this specific use.”
The family have set a goal of $35,000 to purchase two units, train specialists in the use of the devices and to provide 24x7 monitoring of the units for 12 months during the trial. To date just over $10,000 has been raised.
“We have set a nominal goal of $35,000 to buy two but if we raise $100,000 we can buy six,” said Ross.
“The idea is that once the patient is recovered the NeuroNodes go back into the GBS Foundation of Australia pool to be used for someone else.”
Guillain Barre Syndrome pronounced (Ghee-lan Barré) is an autoimmune condition whereby the peripheral nerves are attacked by the body’s own immune system, causing weakness and paralysis of the limbs.
The founder of Guillain Barre Syndrome Foundation of Australia, Jade Parsons, said the immediate consequences of GBS, such as pain and difficulty in communicating, are frightening.
“The human reaction to these kinds of threats to wellbeing is to feel anxious, along with depression, a sense of helplessness and loss of control” Ms Parsons said.
“This can be very isolating and frustrating. We want to use the NeuroNode on three GBS patients who are currently unable to communicate and likely to be in ICU for the next few months. If this trial is effective it will help many others in the same situation and provide a huge help for GBS patients, in being able to communicate their needs and thoughts.”
Ms Parsons also said that it was important to diagnose GBS quickly as there was a direct correlation between the speed of the diagnosis and the extent of recovery.
“Because it is a fairly rare condition many GPs do not immediately consider it as an option,” she said.
“The symptoms can occur quite rapidly over hours to days or slowly over weeks. Most patients reach peak weakness within the first four weeks.”
GBS can present in many different ways making it difficult to diagnose in the early stages. First symptoms include varying degrees of weakness or tingling sensations in the legs, or in some instances may begin as trouble moving your eyes or face. In many cases this spreads to the upper body and in severe cases leads to almost total paralysis. GBS can be dangerous if the muscle weakness affects the chest muscles responsible for breathing.
If you have the following symptoms then you should suggest your doctor tests for GBS as soon as possible.
- muscle weakness in your legs that travels upward and worsens over time
- tendon reflexes have disappeared
- difficulty walking steadily
- difficulty moving your eyes or face, talking, chewing, or swallowing
- severe lower back pain
- loss of bladder control
- fast heart rate
- difficulty breathing
- Symmetrical paralysis