My father was diagnosed with autoimmune encephalitis, after experiencing seizures and deja vu, approx 12 months ago, he was treated with steroids. He subsequently developed diabetes and 9 weeks ago was admitted to hospital after developing a leg infection. The leg infection was treated successfully. Whilst in hospital he became unwell with E coli. This has also been treated successfully.
My father hasn't left his bed for the 9 weeks he has been in hospital. When encouraged to sit himself up in bed or consider moving out of the bed to a chair, he seems confused, he cant seem to follow instruction. He is strong, especially in his upper body so has the strength to do this, his legs have healed, and although weak from bed rest, thete is no reason he can't he engage with physio, but he just doesn't seem to understand.
For the past week he has stopped eating, he had a good appetite prior to this, and must be extremely hungry, however is now eating just one saffron bun each day. The neurology team have advised there is no further treatment they can offer, as he hasn't responded to the treatment they have provided over the past 12 months, he is now receiving care on a community hospital ward however they appear a little lost with this diagnosis.
Any advice appreciated
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WhippetMum101
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I couldn't remember how to walk when I came round and found it possible to relearn a variety of things. I can walk now but tend to suffer fatigue after any exercise or disruption to my routine. I still have no appetite and could not bother to eat at all if left to my own devices.
How old is your dad, I'm 74 this week and find an inactive life hard to deal with at times. I should drink a couple of liquid protein drinks a day but usually forget. My wife brings me breakfast of cereals, tea and toast. Which keeps me going and an evening meal, everything tastes the same. There are hilarious moments.
This week I developed a UTI after being advised to start re-using my catheters by a telephone nurse. My GP didn't sound pleased with her advice. I'm on antibiotics, sleepy and need to drink lots of liquids. Luckily tea counts as a liquid.
Motivation is key for your dad but he needs to exercise, engage with staff, read or do puzzles, Scrabble etc. He may develop bed sores and other problems if he stays immobile.
He's in good hands by the sound of it, a shame about the E. Coli. I research things on the internet to keep my mind active. I can't watch long films or anything flashy like TV - the media definately seems biased and choosy about what they show you. It's easy to get depressed.
Thank you so much for taking the time to reply to my post, I really appreciate it.
My father is 78, and many of the symptoms you describe sound very similar to his. I had no idea this illness may affect appetite or sense of taste. When asked why he doesn't want to eat, he doesn't seem to understand the question, or consider it important. He does continue to drink fluids when prompted, and thankfully, still appears to enjoy his cup of tea, however this is also limited. The hospital have recently started offering protein drinks.
My father is also struggling with fatigue, and any physical effort such as simply moving in his bed, causes him to sleep. He also complains about dizziness and headaches if he exerts himself and must lay flat to rest and recover.
From what you say, it sounds as though he may have forgotten how to walk, this may account for his confusion, he doesn't really seem to view it as important. On the few occasions staff have helped him into a chair, he gets upset almost immediately asking that he go back to bed. He complains he is experiencing a lot of pain in his legs, however specialists can find anything physically wrong. It is such a difficult situation, staff are keen to get him out of bed, however he reports so much pain they can no longer move him.
He used to enjoy reading the newspaper daily however does not read it now, he used to enjoy TV but shows no interest now. However your reply suggests that it may be difficult for him, that he may not have the energy to focus or may be affected by the flashy lights. Unfortunately he can't seem to verbalise or explain any of this, so I feel grateful to you for sharing your experience with me.
My fathers only request has been to move out of a private room in hospital onto a ward, where he does enjoy people watching, the hustle and bustle, comings and goings on the ward.
Thank you again for your response, it has really helped me to understand this illness a little better, I am truely grateful.
Good luck with your recovery, you have done so well, under very difficult circumstances. I hope you have a happy birthday and I wish you all the very best for the future.
I was given ‘Ensure’ drinks when I was in hospital here in the UK & I struggled to eat. I still had Ensure drinks on prescription when I left hospital , too. The drinks have calories, protein, vitamins & minerals, so if your Dad drinks Ensures, it won’t matter if he misses meals .
If his hospital are not offering further help, ring one of the advisors on ‘Encephalitis International”.
They can advise you what support you can request the hospital to provide your Dad .
Thank you for your response. It is very much appreciated.
My father has now been given protein drinks, and after your recommendation, I now feel we should focus on the importance of these, rather than food, which at this time appears to be a real struggle for him.
I will call an advisor at 'Encephalitis International' as our family do need advice, it will also help to gain a better understanding of the illness.
Although I can't fault the care my father is receiving in hospital, I have learnt more about this illness visiting this site, viewing posts, and speaking to individuals like yourself, than from information shared by medical professionals, which has been limited.
Thank you again for your response. I wish you all the best in your continued recovery.
Hi Mrs. Whippet, thank you for your reply, which has raised my spirits. To know we are still useful despite our disability is a big bonus. I used to open the curtains on the ward and make my own bed and the staff appreciated these things. Showing appreciation makes a big difference. I don't know if they would have let me push the tea trolley but I really fancied having a go.
Once I got back on my feet and could be trusted not to fall I walked up and down the ward for an hour or more a day. This constitutes at least a mile or two. It was so out of the ordinary that they didn't quite know what to make of it. I explained it was good for my mood, my metabolism and good practise.
I'm in the UK, where are you? Through my GP I was contacted by a social worker who arranged support. (physio, psych, diet, speech therapy, blue badge, RADAR key for disabled toilet), hidden disability badge and lanyard. All this had been promised by my hospital doc. and we waited for about 18 months before we realised he hadn't bothered to arrange it.
He was not someone who could be relied on at all. Once all the attention and marvels had died down he completely lost interest. He had a private practice too and it seemed the NHS didn't feature heavily on his mind. A nice office, plenty of fame, a secretary (who seemed to shield him from contact by phone and not pass on messages) and a parking spot were the attractions it seemed.
When we finally got an appointment he was offhand and showed little interest. It seemed we weren't the only ones to feel this way and on one visit we were given a feedback form to fill in. He said all doctors had to be monitored in this way but I felt he was lying again. He seemed to do the minimum and all his promises were empty ones. After he initially told us he would arrange aftercare he did nothing and we waited 18 months, assuming we were in a queue. It was only via a social worker that anything was arranged ........
He would ask personal questions about our opinion of the treatment and other things, especially when I was coming round and vulnerable. I became wary of him fairly quickly. I thought follow up would be automatic, with scans and other tests but there was nothing. I have made a remarkable recovery over the past 4 years due to the NHS and got on well with my nurses etc.. Where was the interest? Some medics can run rings around you - most staff are angels.
My immune system doesn't function much now and I get repeated infections which can lead to fever and sepsis. I've been to hospital by ambulance several times due to seizures and infections, on IV penicillin etc. All these are very wearing and I have to be very careful where I go and close contact situations. For them it may just be a tickly cough, for me it could be several weeks on antibiotics. I wear a mask when indoors among strangers e.g. the GP waiting room.
Fatigue - when first released a walk to the end of the road laid me out for a couple of days. The sights and sounds were too much stimuli. Gradually I got better and better and can now do a country walk/hike as long as I allow for a few days rest afterwards. Fatigue can strike even when I have been taking it easy and complete rest is all I'm capable of. Putting out the refuse or tidying a cupboard can be enough for one day.
Brain damage affects the specialist areas of the brain that deal with memory, the senses, decision making and all the other functions. A scan reveals which parts are damaged and so the after effects can be predicted. Packing a suitcase is incredibly hard as I can't keep track of what's in and what is on my 'to go' list. I have hospital bag ready in case I need to go back in but can't remember what's in it.
One essential item I discovered is pain relief. I have a permanent spinal fractures and take morphine and Paracetamol as and when at home. Staff would always refuse to give pain relief, only docs can prescribe it. I could have walked across the road and bought things that were denied in hospital. Since then I smuggle pain relief and morphine in to the hospital so I am not in agony all day and night. Most days I don't need it and can manage.
I can't taste anything, all foods and drinks are equal, bitter and sweet are the only tastes I can sense. This is unlikely to change as the brain regions (Temporal Lobes) dealing with this are goneor damaged and won't return. All foods look attractive but just taste like mush - this is an improvement. initially my brain couldn't figure out tastes at all and everything tasted like sewage (not nice!).
As you have discovered the Enc Soc is invaluable. If your father was active, a decision maker, creative, a DIYer, sociable, like to cook etc. he may find life intolerable. Having to relearn the basics of living puts you back in the world of a toddler. Shaving and brushing my teeth were a novelty and I was certain the face in the mirror was not mine. And who bought all those bizarre clothes in the wardrobe and since when did I like listening to pop music?
I find the short videos on YouTube very interesting - who built the Pyramids etc. and the US traffic stops are pretty good. I have to rebuild myself and pick up the pieces that are still there. Things from my youth like the Rolling Stones videos are good, plus some jazz etc. When a friend comes round we play improvised guitar together and have a laugh.
I can feel like a disabled war veteran at times, nobody can understand what I have been through, some think I can 'pull myself together' (that's funny and very descriptive - but no I can't). Friends disappear as they can't cope with the new me; but I often did the same when my associates were unwell. Finding new things to do is difficult, some are too much of a challenge if your awareness is limited, you can't organise or lose track of things.
Anyway I could go on but need a break now, I'm tired and I may not be saying things that are relevant. Enc. is a whole new world, I'll watch the birds on the bird feeder and look at the trees. Hurray! I can do some stuff!
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