Raising awareness Your Stories Janet's story Janet had an epileptic type seizure one afternoon in January 2007 (writes her husband, Peter). She was at home with me, her husband Peter and I phoned 999. Within about two minutes the first responders arrived and gave her oxygen and shortly afterwards the ambulance arrived. Janet was taken to The Princess Royal Hospital in Telford. The doctors were uncertain as to what was wrong with her but after various tests they diagnosed her with viral encephalitis and she was given acyclovir intravenously. Janet had received massive brain damage. She suffered fitting and was put into an induced coma. After at least one week in a coma the sedation was reduced and she gradually improved. She was weak and confused, sometimes thinking she was one of the nursing staff and was unable to recognise familiar faces, including me. On one occasion her confusion lead to her pushing a protesting lady patient along several corridors in the hospital before the mistake was spotted. However, after a month in hospital she was discharged home. At home she lacked energy and required motivating to get washed and dressed but she was able to do her own personal care and was able to converse and function nearly normally, although was easily distracted from the task in hand. After about a year she was nearly back to normal although needed a walking stick to help with balance when outside the house. She sometimes left things like her hat or handbag at places such as cafes but after a while she overcame this problem. Janet was receiving no medication and her general health was good. We were able to enjoy a normal life and Janet was active in the local church community where she became a side person and served for one year on the parochial church council and managed without my aid. Almost every day we walked to the town centre and back which was about two miles. In 2010, we went on a holiday to the United States. It was a coach tour and we visited Yellowstone National Park and The Grand Canyon amongst other places and Janet managed very well apart from getting lost briefly at Denver airport right at the beginning of the holiday. This occurred when some members of the tour group waited outside the toilet at the airport while others went in to use the facilities and after a while everyone returned apart from Janet. After several more minutes one of the ladies entered the toilets again to investigate but there was no sign of Janet. There was some slight panic and I then asked the airport staff to try and find her. Her name was called over the loud speaker system and Janet immediately appeared as if by magic. It seemed she had found some less used exit from the toilets and was just waiting around a nearby corner thinking we had all got lost rather than her! After this, I had to keep a bit of an eye on her in case she got lost again during the trip, but it didn’t happen again. After that initial hiccup we really enjoyed the holiday. As time went on she became almost back to normal. She still felt the need for a walking stick when out and about. She said this was to help her balance but she managed without it in the house. She still occasionally had prosopagnosia, but this was infrequent and with her sense of humour she was able to get over potentially awkward moments when she misidentified people. This sometimes resulted in bizarre and hilarious conversations as the other person tried to make sense of what was going on. There was a slight change in her personality compared with before 2007. She was generally more relaxed and amiable and less combative than before, although it was not a big difference. Things went along quite smoothly until 2015 when I was diagnosed with prostate cancer. Janet accompanied on all my trips to Shrewsbury hospital which included 37 trips for radiotherapy. Janet was a great support to me during this time when we felt I was the less healthy one of the couple. However, we came through it and I now just have six monthly check ups. We were able to go on holiday to Beadnell in Northumberland several times and to Norfolk where Janet accompanied me on several birdwatching trips around the country. We were able to visit our two daughters frequently and enjoyed the company of our two young grandsons whom we saw on a weekly basis. On 28 November 2016, Janet again had a seizure and again I was present when it happened. The symptoms were very similar to the situation in 2007. Janet was rushed to The Princess Royal Hospital and she remained in a coma for about a week. This time it was thought the problem had been caused by deterioration of the previously affected area of the brain following the 2007 attack. She remained in hospital until 23 December. While she was in hospital she contracted MRSA and had a blood clot in her left leg, but she overcame these set-backs before her discharge from hospital. On discharge she had to sleep downstairs for two weeks and I had to help with her personal care. She was mentally alert though a little weak. Within a month from leaving hospital she was able to sleep upstairs again. She was now prescribed lamotrigine tablets which she had twice a day. She quickly got back to the post 2007 health position and we were able to go on holiday again in May 2017 to Beadnell, Northumberland. The year 2017 went quite well for Janet and she continued her involvement with the church and accompanied me on birdwatching trips. I had a set back with a strangulated hernia, but we got through it. In June 2018, Janet saw the neurologist who was very pleased with her and said she was doing very well and discharged her from his care. Like all the other doctors and consultants who had seen her CT scan, he was amazed that she functioned so well and was able to lead a normal life. The brain scan showed a large dark area over most of her left frontal lobe. She was to continue with the lamotrigine tablets as before. During 2018, I was diagnosed with a vertigo condition and genetic haemochromatosis and Janet helped as I received treatment for these health problems. We were coping well again and getting out and about and Janet was able to see her new baby granddaughter born in August. She seemed to be doing very well until struck down with a seizure again in the evening of 7 September 2018. We had been out and about on that day and Janet was very well. Again, I was present when she had the seizure and she was rushed to the PRH hospital but remained unconscious until she died on 20 September. She had also suffered a cardiac arrest a few days after going into hospital. Prior to the 2007 illness, Janet had been fit and well and often cycled to and from the care home where she worked as a care assistant. She had sometimes complained of bad headaches, but these didn’t happen very often, and she just used normal painkillers and did not consult a doctor about this. Janet was aged 64 in 2007 when she was diagnosed with encephalitis. Throughout her earlier life she had few illnesses and had worked as a civil servant from the age of seventeen until leaving aged thirty-five to look after our two adopted daughters.