I thought that today, being World Encephalitis Day, I should finally write the post that I have been meaning to write for months. I can’t believe it’s been six months since my last update, and my oh my how different things are now!
A brief recap: my husband was diagnosed with HSE In June 2021. He was in an induced coma for two weeks and in intensive care for a further three. After two weeks on a ward he had his trachy out, but then things went down-hill again and he was diagnosed with Autoimmune Encephalitis, triggered by the original HSE. The setback was massive and almost more frighting for me than the first time round. Eventually he went on to receive what I can only describe as a transformational Plasma Exchange treatment back in ITU, and he’s made steady progress ever since.
He was finally discharged, after 4 months in hospital, at the end of October (which just so happened to be our wedding anniversary), has since received Rituximab infusions and – the hope is – that’s now it!
His recovery has been utterly incredible. Eight months ago he couldn’t walk, talk or breathe unaided; five months ago he was learning how to swallow and struggled to remember so many words; four months ago he could hardly spell or remember the names of letters (he’d practice reading out car registration plates on our daily walks around the village) … and now he’s working a full-time job and teaching guitar again!
Since coming home our main focus has been re-sorting all the information in his head. We’ve thought of it like a filing cabinet which has had all the drawers pulled out and tipped over the floor and we’ve been gradually reorganising everything. Drawers we visit regularly are now all sorted, but every now and then we find something we’ve not looked at since before he was ill (“Where is the Eiffel Tower?!”) but then we talk it through, he recognises the correct answer, and that’s another thing back in place. I firmly believe that nothing has been truly lost, but just that some things are, and continue to be, more complex to re-organise. I know we’ll get there eventually though. Other things however may never come back – his sense of smell for one (and therefore his taste), but as frustrating as that is, I know he’d rather that than lose almost anything else.
All-in-all he is remarkably and wonderfully well. He is still the same person: a hugely talented musician, a loving and attentive father and my best friend. I am so hugely proud of him, of how hard he’s worked and how far he’s come and we’re all too aware of how fortunate we are to have come out the other side of this horrendous ordeal relatively unscathed.
I’m extremely grateful to all the words of support received on this forum in my darkest days last year and I hope that those going through similar situations might read this post and feel the same sense of hope that you all gave to me.
Wishing you all good health, happiness and love xx
Has anyone had viral encephalitis turn into autoimmune encephalitis?? 
Is anyone out there?
Sobbing seizures?
Encephalitis missed by GP and By Eye casualty visit
