Raising awareness Our blog James' story There were no warning signs. As usual James had had a busy week running his brewery business single handed. The weekend was eventful too. We’d gone to the theatre on Thursday then for a meal with friends on Friday. On Saturday evening we went for a meal and to the theatre then after the show we had a few drinks. On Sunday morning when James woke up he seemed to be a bit under the weather but I put it down to over indulging the night before. As the day wore on he did not seem to improve and he decided against going to the pub at teatime for a few pints with his friend which was very unusual. On Monday he still didn’t feel right and made an appointment with the GP. The symptoms he described, loss of memory and confusion suggested to the GP that James may have had a TIA. Tests for that proved negative. The following week we went back to the GP and James was prescribed anti depression medication as it was thought he may have been overworking and had become stressed. He was also referred for a mental health assessment. James’s behaviour became more peculiar, he was subdued and confused and very forgetful. He asked the same questions over and over again. Eventually we hid his phone and laptop because in his confusion he was sending bizarre emails and texts to people; he sent an email wishing someone a merry Christmas because he thought it was December when it was in fact May. I would overhear him talking to people on the phone who he knew and it was clear that he had no recollection of who they were. He was so confused he couldn’t remember anything from before becoming ill such as the death of his father 16 years ago; he thought he was still employed by the Audit Commission and had forgotten that he had been made redundant and had started his own brewery in 2011. He started to have ‘funny turns’ where a shudder passed down through his body in a wave which prevented him from moving or speaking for the couple of seconds that it lasted. At night he would sweat so much we had to change the bedding daily and sometimes through the night. His appetite deteriorated and he lost a lot of weight. If I asked him what he wanted to eat he’d say he wasn’t hungry but whenever food was put in front of him he’d eat it. If he hadn’t been prompted to eat it probably wouldn’t have crossed his mind. Three weeks after the symptoms began James went for a mental health assessment. The mental health worker did not think that James had a mental health issue and that something else was causing his problems. That weekend an appointment arrived in the post for James to have an MRI scan on 11th June. That was three weeks away and he had already been suffering for four weeks. I booked a private MRI scan which took place at The Nuffield, Leeds on 26th May. His memory was so bad that by the time we had made the half hour journey home James had no recollection of having had an MRI. The following day I was told to take James to Barnsley District General Hospital where he would be admitted for tests. The MRI scan had shown swelling of the brain which was the reason for his prompt admission. Various tests were carried out including a lumbar puncture in order to diagnose his condition and he was subsequently transferred to the neurology ward at The Royal Hallamshire in Sheffield. Once the doctors had confirmed that he was suffering from limbic encephalitis treatment began and he gradually began to show signs of improvement. It is now just over a year since James’ symptoms began and ten months since he was discharged from hospital. He continues to make a slow recovery however he is unable to continue with his business as he lacks the concentration and energy needed. There are still huge gaps in his memory and he struggles to make new ones. He has no recollection of being in hospital or the period of time leading up to his admission. I arranged a weekend on a canal boat in Oxfordshire with the family to celebrate his 60th birthday which took place about 3 weeks after he was discharged from hospital. When we arrived home a friend asked if he’d had a good time, James had forgotten where we’d been and had to ask me what we had done. He still has no actual recollection of the weekend but he knows we went from looking at photos and listening to the family talking about it. We attended the engagement party of our daughter and her boyfriend in London in February, James can remember that the event took place but he is unable to remember anything about it. He still suffers from cognitive fatigue but it is improving and he is able to manage it by avoiding noisy busy environments as much as possible. James finds busy and noisy environments such as supermarkets or restaurants very draining. He is still allowed to drive but chooses not to because cognitively it is too demanding and since the illness he finds it difficult to visualise places and routes to them. When he was first diagnosed the consultant did not think that James would make a full recovery. Fortunately this has not been the case however there are some slight personality changes along with the inability to make memories. James is now much more emotional than he was and can easily be moved to tears and he’s more gregarious, regularly engaging strangers in conversation.