Jonathan, my husband of 21 years, passed away from health complications following a diagnosis of autoimmune encephalitis in 2024.

How it started

My story begins in February 2023 when my husband started acting strangely and the “essential tremor” in his hands seemed to spread to his legs. He’d been diagnosed with an essential tremor a few years earlier but he had type 2 diabetes and the drugs can cause shakes, so when his legs started trembling and shaking whilst he was standing at the kitchen sink or making a coffee etc. we didn’t think it was anything too serious.

By April that year, his behaviour started to change and he became very aggressive and shouting a lot at me and that wasn’t his way. He had also been having strange hallucinations like interpreting the bedroom ceiling fan as an eagle.

We decided by the April that we had better go to the doctors to get checked. Our concern at that stage was that he’d developed Parkinson’s disease and he would need some treatment.

The doctors sent him for an MRI scan at a local hospital (which did not have a neurology department) and they interpreted the results of the scan as Creutzfeldt-Jakob Disease (CJD) from eating infected beef during the 1990s. The outcome for that diagnosis wasn’t good but he was admitted to hospital for further tests on the Friday of that week and put on a general ward. Unfortunately it was the King’s coronation that weekend and he wasn’t seen by a doctor until the Tuesday morning. The hospital doctor (who was not a neurologist and was working on the diagnosis of CJD) wanted to do a lumbar puncture but he was liaising with other hospitals and doctors as he wasn’t a specialist in neurological problems. Due to my husband’s behaviour changes, he completely lost his temper with this situation and discharged himself from the hospital wanting a second opinion. His General Practitioner doctor wrote to another larger hospital in the vicinity who had a specialist neurologist team. They carried out some further tests but it took a long time to reach a conclusion and on August 22  year he was diagnosed with autoimmune encephalitis of the basal ganglia. It was causing swelling in his brain and by now was causing serious shoulder spasms and pain, hand deformities and he was struggling to cough and swallow due to his thoracic muscles being affected.

The hospital wanted to try and flush out the rogue antibodies and admitted him for plasma exchange treatment. They had carried out some tests for causation and had said that the antibody which was attacking his brain was very rare and very few people in the world had experienced this same antibody.

What happened next

The treatment started with an intravenous line in to his neck to exchange his plasma. It took a few hours to flush through and he was due to have this treatment 3 times and then review and rescan his brain for changes. Unfortunately however, he got an infection in the “line in” and sepsis set in. On the 14/09/2024 he had a bad fall in the hospital and was admitted to ICU for 7 weeks. He was in an induced coma for 4 of those weeks and by now had not had any improvement from the initial plasma exchange. Due to his decline in being able to swallow and breathe,  he was fitted with a tracheostomy device and also a food pipe in his stomach while in ICU. After 7 weeks he was taken back to the ward where his plasma exchange treatment restarted. We were hopeful for a recovery and after 2 further treatments there was some improvement in the swelling but, due to being bed bound for what was now a few months, and despite having physio in bed, he was losing the ability to move for himself. Botox injections were given for his shoulder to stop pain and constant rotation and also for his hand which had become deformed due to constant twitching and muscle changes.

In January 2024, the doctors sought permission from approval bodies to put him on Rituximab which was a drug used for cancer patients but is understood to have been successful in treating autoimmune encephalitis. The approval bodies were needed because the use in this case was beyond its scope of approval. It was agreed a treatment started at the end of January 2024.

Whilst he was trying to recover in hospital, he unfortunately had set backs which included a pulmonary embolism, Covid 19 infection and several pneumonia attacks which caused even further difficulties with breathing and again he was put on breathing apparatus. A Do Not Resuscitate (DNR) was also instructed by the doctors.

Sad outcome

On 14/03/2024 the doctors, with his agreement, turned off his life support machine and he passed away at 5pm that same day. His adult children were with him when he passed but I wasn’t. Despite being with him for most of his time in hospital and on the day he passed until 4pm (when I had to leave due to not being medically permitted to drive in the dark), I wasn’t able to be at his bedside when he passed. He was 54 years old and is, and will be sadly missed by me and his family forever. RIP Jonathan.

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Story Published June 2026