Auto-immune disease attacked brain cells
A Woy Woy man wants residents to become more aware of a little-known medical condition that he believes almost cost him his life.
Mr Jackson Tumpey was a normal 23-year-old when he was diagnosed with auto-immune encephalitis, an illness that caused his immune system to attack healthy brain cells.
He said that over time the attacks on healthy cells lead to brain inflammation which can cause neurological and psychiatric symptoms, including impaired memory and cognition and problems with balance, speech and vision to full blown psychosis, aggression, inappropriate sexual behaviours, panic attacks, compulsive behaviours and intense emotions.
Symptoms may fluctuate, but often progress over days to a few weeks, he said.
He said that if left untreated the disease could progress to loss of consciousness, coma and in some cases death.
Mr Tumpey said he was diagnosed on September 10 last year.
"I was on my usual drive to work on the M1 when it all started.
"I lost the ability to make cognitive decisions and went into autopilot.
"I managed to drive from the Central Coast to Sydney successfully, but I still don't remember the whole drive," Mr Tumpey said.
"Within two hours of arriving to work, I lost the ability to complete a coherent sentence.
"I became more and more frustrated because as far as I was concerned, I was making sense, but no one could understand me.
"The only way to describe it is when you are half asleep and cannot speak coherently until you're fully awake, except I couldn't do anything to fix this," Mr Tumpey said.
After another few hours, Mr Tumpey began losing control of his movement and began hallucinating.
By the time he arrived at Royal North Shore Hospital, he could barely walk without falling over and was dismayed to find that hospital staff suspected he was in the throes of a drug overdose not an unknown medical episode.
"The nurses believed that I was having a drug overdose and were asking me how long I had been using and what had I taken," Mr Tumpey recalled.
After a urine sample eliminated drug use, Mr Tumpey underwent a series of tests.
"An MRI confirmed I had inflammation on the brain, but doctors weren't sure what was causing it."
Mr Tumpey spent a few days undergoing tests for everything from tuberculosis to cancer as doctors whittled down the list of possible causes until he was diagnosed with auto-immune encephalitis.
Mr Tumpey said those days of waiting were some of the worst of his life, along with the following fortnight where he was kept in the hospital's neurology ward.
"The doctors didn't want me to go outside, but after five days of pleading I was allowed to walk through the gardens."
After almost a month in hospital, Mr Tumpey was discharged and then began the process of getting his life back in order.
"I had been bedridden with the flu a week or two before I was hospitalised and doctors suspect that's when the auto-immune encephalitis emerged," Mr Tumpey said.
Mr Tumpey said his mental abilities came back within a week of his hospital stay.
However, he found that, while he could now walk without fear of falling, he walked at odd angles and couldn't walk straight without actively thinking about it.
He is still contending with a licence suspension imposed due to his treatment involving anti-seizure medicine.
While the suspension has limited his independence, Mr Tumpey is taking it day by day and is now sharing his story to raise awareness about his condition.
"I hope that more people become more aware of auto-immune encephalitis and that medical professionals can learn to diagnose this condition more swiftly.
"If doctors and nurses can see the signs and test for this sooner, people can begin to be treated quicker and reduce treatment and recovery time," he said.
Email, 10 Feb 2020
Jackson Tumpey, Woy Woy