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In April 2020, my dad was diagnosed with a neurological brain disease called Paraneoplastic limbic encephalitis (PLE). 

For those of you that don’t know, this is a rare neurological syndrome associated with cancer, and selectively affects limbic system structures, including the hippocampus, hypothalamus, and amygdala. Patients often present with cognitive impairment, personality change, short-term memory loss, and seizure. 

Dads life expectancy all of a sudden was just a short 3-6 months. As you can imagine this was at the start of the pandemic and we didn’t understand much about this condition. 

In June of 2020, Dad was admitted to hospital following a  seizure that could not be stopped. He then was placed in an induced coma where he stayed for 2 weeks. Within this period, we were advised on a couple of occasions that we were going to lose Dad. But he woke and beat the 90% odds they put against him. 

Following this we have had numerous ups and downs, hospital and doctors phone calls due to no face to face because of Covid. We have been living with the PLE diagnosis, and helping dad recover from a 10 week hospital stay where he had to learn to walk and do things for himself, but knowing that his life was never going to be the same again. 

We have had alterations to his home, adding a stairlift and so dad can still use both up and down of his home and also purchasing an electric scooter so should he want to go out he can do as he cannot walk for long periods now. 

Two years have passed and Dad is still with us, but we have now been advised that the original diagnosis is incorrect. Unfortunately, Dad has been living with a brain tumour for these two years. 

This mis-diagnosis means that Dad has been delayed the treatment he really has needed over the past two years and we now have to begin further tests to find out how aggressive the tumour is. 

If we can raise some money for The National Brain Appeal, we can try and help families who are living through the nightmare of brain illnesses and try to understand more, earlier so that we can get treatment correct from the onset. 

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