Imagine being unable to remember your wife’s name, having to say goodbye to your livelihood and even losing your sense of smell.
That is the ordeal which Huddersfield dad Greg Spence faced when he was affected by encephalitis at the age of just 46.
Now the father-of-three from Clayton West is aiming to educate others about the little-known condition, an inflammation of the brain, ahead of World Encephalitis Day on Wednesday, February 22.
Greg, then a driving instructor, fell ill when he took his children to a Top Gear motor show in Birmingham back in 2008.
He said: “When we got home I was taken to hospital to be assessed. They weren’t sure what was wrong and sent me home, telling my wife to bring me back in if anything seemed out of the ordinary.
“The next morning I couldn’t even remember my wife’s name so she took me straight back to hospital where, after having had a lumbar puncture and an MRI scan, the doctors determined it was encephalitis and immediately began treating me in a high dependency unit.”
It would be a month before Greg became aware of his surroundings and then his journey of recovery was only just beginning.
“I had to surrender my driving licence, which for a driving instructor was basically saying goodbye to my job,” he said.
“I felt totally useless for months as I was slowly re-learning the world around me – re-learning who friends and family were, even simple things like who Father Christmas was.
“I developed anosmia – a loss of sense of smell – and can only taste ‘tastes,’ not flavours, which can make so many foods just seem like eating ‘cotton wool.’”
Around 500,000 people are affected by encephalitis globally each year – regardless of their age, gender, ethnic origin or culture.
Those who survive can face an uncertain future as the condition can leave them with an acquired brain injury, meaning a return to work or education can be difficult.
Abilities such as memory, concentration, attention, thinking, memory, judgement and inhibition can be affected, while there can be additional challenges such as epilepsy or fatigue.
Greg, now 55, added: “I slowly re-learned things but eight years later I still have problems remembering names and have to constantly write things down so that I can ‘look them up’ if I have to.
“I am now back working and making a new life for myself but I fully understand how precious such simple things as memories are in our lives which is why I want to make people aware of encephalitis and the impact it can have.”
Greg, now a van driver for online supermarket Ocado, is married to Stephanie and they have 27-year-old twins Linzi and Matthew and 21-year-old son Kyle.
Encephalitis factfile
The types of symptoms seen in encephalitis reflect the specific areas of the brain affected by the inflammation. The range of symptoms and their rate of development vary widely and can make the diagnosis of encephalitis difficult.
Infectious Encephalitis frequently begins with a ‘flu-like illness or headache. Typically more serious symptoms follow hours to days later. The most serious finding is an alteration in level of consciousness. This can range from mild confusion or drowsiness, to loss of consciousness, seizures and coma. Other symptoms include a high temperature, seizures (fits), aversion to bright lights, inability to speak or control movement, sensory changes, neck stiffness, or uncharacteristic behaviour.
In autoimmune types of encephalitis people can present with psychosis and hallucinations among other neurological presentations. Sometimes these patients can be mistakenly thought to be developing psychiatric or mental health illnesses.
The Encephalitis Society (www.encephalitis.info) was founded in 1994, is a registered charity and the only resource of its kind in the world providing direct support and information to people affected by encephalitis, and to their family and friends.
The fourth annual World Encephalitis Day is asking people to wear something red to raise awareness of the condition and share them on social media using the hashtag, #RED4WED. Several landmarks across the globe are also ‘going red’ on February 22 including Niagara Falls, the fountains at Trafalgar Square and Blackpool Tower.
