My husband has/had viral encephalitis and is being treated with anti virals. He only went down with it about 9 days ago but I feel that I have lost him. He has none of the physical impairments mentioned in some of the posts I have read.
He is still the same basic person and is neatly improved since the time when he didn't know who he was or the rest of the family. His memory is impaired both sort and long term. Also his powers of reasoning. I know it is very early days but wanted some support and advice on how to help him along.
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lady2189
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Dear lady 2189 - So sorry to hear about your husband. I understand what you mean when you say you feel like you've lost him. That's how I felt too. I wondered if I would ever get 'him' back. But I have! He is not exactly the same, but we all change along life's journey with and without getting sick.
It has been almost a year since my husband was diagnosed with Encephalitis (H1). Waiting for him to heal and watching him heal has been a very slow and hard process. The people on this web site told me it would be a very slow process, and that's hard to hear when you're going through it, but it's the reality.
Even though I believe my husband always knew who I was, he had a lot of hallucinations that were quite un-nerving and some of the simplest things that would be a no-brainer in the past, were also discouraging to witness. For example, in rehab, he wouldn't know the direction to his room, couldn't remember the passwords to his cell phone or how to work it, and wasn't sure how many homes we owned or where we were living. It was kind of like dementia, which was scary!
We were told that 'rest' was the best thing. Sounds easy, but when he finally got home from Rehab, he felt like he had to 'power through' the tiredness. Not good! Once we realized that sleeping was like doing calisthenics for brain healing, he actually felt OK with taking 2 or sometimes 3 naps during the day and I encouraged him to sleep as much as he felt like he needed to. Basically, 'listen' to your body. Be sure to read the 'Letter from My Brain' that is posted on this site. It helped both my husband and I when we read it.
Wishing you strength and patience moving forward in your husband's recovery.
PS - my husband had Physical Therapy, Occupational Therapy and Speech Therapy, all of which helped. His speech was never impaired, but the therapies in that discipline helped re-connect the dots in the brain.
I can only repeat what CG511cg has posted with a few changes. I'm in my 4th year and my progress is described as remarkable.
Going from no memory, no basic skills, great fatigue, being unable to quite recognise myself in the mirror to my present condition has been scary at times. If you read some of my past posts you will get some idea. Now people are amazed and see me as almost recovered. It's step by step and learning as you go along.
If your medication has been settled and the home environment restful then he should make steady progress through rest and relearning. Brain exercise and physical exercise helped me plus support from rehab via my GP and a social worker, plus therapists.
Your husband may in some respects have the capacity of a toddler, having to relearn some basics, reading, writing, drawing, puzzles, listening to some music. If he is like me he may have a short attention span so TV and films may be too much. Short YouTube posts may please him - I like US traffic stops!
Must stop now - see the enc soc wbesite for more details of symptoms etc.
Thank you for the encouragement and as we are in the very early stages of treatment and road to recovery the outlook seems very bleak. By the sounds of it my husband has not been as badly affected and others. Whilst in hospital he was unable to recognise family members, didn't know his name or where he was. This gradually came back to him. He remembers nothing of this.
He has no physical impairment which sounds like a plus compared to what some people have gone through. Waiting for MRI scans and appointment with the neurologist and still under the care of the hospital but at home.
He is improving day by day since we came home. He can care for himself and the long term memory is pretty good. He can chat away happily to friends about deep seated memories but gets very confused in the short term. Its really hard work mentally to care for him but sounds like we are in for the long haul so better get used to the every changing new normal.
We have yet to get a treatment plan but just working on the basics of living really. We go out for short walks and try to keep him engaged and in real time. He sleeps a lot which helps.
I am really sorry to hear what your husband and you are going through. It’s hard to all of a sudden lose all clear guidance and outlooks, I know from first hand experience. I had viral meningo-encephalitis a little over a year ago. I cannot remember much (just loose ends) from the first months, but my wife does, vividly. So some things I write are second hand knowledge…
I suffered from memory loss, too. And I sometimes still do. My long term memory did come back, for the most part, but my short term memory is not so great anymore. Especially in crowded places, when there’s lots of information to filter the important bits from, or when I am tired. The first months after release from the hospital, I mostly slept. I’ve never been so tired in my life. But I slowly started doing things, step by step, and did start to see improvements.
In order to recover, I ascribe to the “use it or lose it”-approach, so I have been training. I try to start every day with some form of workout and a longer walk. I have found that I feel clearer and better focused after that. And I tey to excercise my brain as well. Just to make sure I keep using it (and thus improving, where possible). I am not able to return to work (yet), but I have done all sorts of cognitive excercises, from brain training apps (Peaks, for instance), doing Sudoku puzzles, trying to learn a language, playing chess, art, … - anything to keep my mind busy. And I believe this helped me improve.
It’s a struggle to find a balance between rest, physical activity and cognitive ability, also because that balance is constantly shifting. But the general approach worked for me. I’ve spent several months in a rehabilitation center, too, by the way. They have taught me tools and methods to better balance my energy and work around the impairments.
In short: Everything has changed, but the fundamental part remains: I am still there. Mostly with the same personality. I don’t think I will ever be the “old me” again. But I am striving to be the best “new me” I can possibly be. When that realisation clicked in my brain, everything changed for me, and I was able to approach life and recovery with a much more positive outlook. I wish the same for your husband and you. If you, or your husband, would ever want to talk about this ordeal you are going through, please do not hesitate to contact me. I am happy to share abything that could help you, or even just to listen.
cg511cg’s describes sleep as being ‘like doing calisthenics for brain ’ . I think that’s the best advice in the early stages of recovery. Your husband will need to sleep to cut out sights, sounds, smells and sensations around him as his brain focuses on creating new pathways around the damaged zones. It is an incredibly complex healing process, and it takes time to see what level of recovery your husband will achieve. My husband was told it would take two years before we would see what level of progress I could make.
My memory was appalling , but speech therapy in the first year helped to improve it .
I couldn’t initially read , write or follow movies due to memory loss , but listening to my favourite music was really uplifting and effortless, and helped to prevent depression .
In the first year I had disasters like leaving taps on and flooding our kitchen, and disappearing down the road with our dogs while my husband got our daughter ready for school, but things did improve. The main thing is be patient and to accept that it is quite normal for your husband to make mistakes on his brain’s long recovery journey .
Hi lady2189 – I hope the NHS are looking after your husband as well as they looked after me. I was in hopsital for almost four months – was very lucky to have encephalitis twice which kept me in longer than it would have been – and don’t even remember much of it … apart from the vivid nightmares. But, from then life slowly moved, bit by bit, back into place and now it’s pretty normal – or a new normal anyway. The brain’s so complex I think that’s (a) why many of our encephalitis experiences are different (b) why we do get better once over the initial fazes … the brain has an amazing ability to fix and forge new connections. Fingers crossed for your husband – your support is helping him get there.
Thanks for getting touch. I must say the NHS has been great. From being rushed through A&E with a very early diagnosis has I think helped. We are exactly 3 weeks from the day be became poorly. There was one particular junior doctor in A&E who instantly knew what was going on and got tests and anti viral medication started almost immediately. Everyone in the hospital from the porter to the consultant have been efficient and reassuring.
My husband also remembers nothing of this and when explained to him how poorly he was he can hardly believe it.
We will be having a MRI scan tomorrow and follow up with the neurologist. However, I have to say the improvement in memory and wanting to 'do things' has been remarkable over the last few days. Still many issues with memory especially short term but there has been some improvement.
Reading the posts I can see that everyone's journey is different. I am really pleased that you now describe your life as 'pretty normal' and hope we have the same outcome with support from medical professionals, friends and family.
Yes - I think the viral encephalitis can be more obvious (certainly was in my case and sounds like it was for your husband) although still needs great nurses and doctors to know what they’re looking for of course.
Like your husband, I don’t remember much about the first period in hopsital and when I did ‘come round’ to more normal life (months later!) it was a bit like a made up story to me – 1% of me still doesn’t quite believe it. I’m taking every_cloud ’s word for it 🙃
Best of luck. And improvements should be on the cards! They always say the first 18months are the biggest steps. My local expert also said it doesn’t stop there … years and decades more help too. And the brain is amazing for finding new ways to do lots of things again.
Just an update as a few weeks in and I must say my husbands recovery has been remarkable. He still has issues with short and long term memory, concentration, impatience and fatigue. The scan showed some damage to the memory part of the brain but the neurologist says 'he got off lightly'. This was because the doctor in A&E started treatment almost immediately when we got to hospital. It was H1 which apparently impacts mostly on memory.
He can drive a couple of mile, he never drives much further than this as I do, but this really wears him out and he is starting to get out and about a bit more. However, he gets so tired that he has to rest frequently during the day. All in all the future is looking better but we are in for the long haul but much more positive now.
Thanks for all the encouragement and my husbands journey through this shows there is hope. A few weeks ago I thought he would not come back from it but it just shows what the brain is capable of. We still have a very long way to go and who knows where it will end. 😊
Glad to hear things are a bit more positive! As far as driving goes, my husband can drive, but it really taxes his brain and wears him out, so I drive. This way, he can save his energy for something else.
Hi Lady, it's good to hear that at the moment your husband has few physical impairments. My short and remote memory was affected to begin with. My personal life history was vague and my current identity was in many ways completely forgotten.
Reading short stories, revisiting history, watching music videos from the 60s, walking in the local countryside, visiting childhood haunts and relating and listening to stories from my past all helped to rebuild a sense of me.
Parlour games like dominos, Scrabble, patience and crosswords were good for mental exercise. E+xpressions of affection and love helped to reassure that I was going to be OK. A lot depends on personal circumstances. I would quite like a pet animal like a dog or cat, or even a parrot. But I'm not sure I am reliable enough as a carer/provider.
It's a bit of a cliche but our paths to recovery may be quite unique to ourselves. I find that random events like the courtesy of strangers can be quite moving and can also work in reverse. Contact with shopkeepers and bus drivers etc. can also have a rewarding effect.
Having said that, I have to avoid busy environments and loud or bright scenes. My local supermarket has introduced 'quiet' shopping periods especially for the autistic and seizure-prone members of our community. I rely mostly on my wife and Amazon for shopping, multi-tasking is pretty much beyond me.
I have a few projects from the past that remain unfinished. I was part way through refurbishing a couple of outboard motors and when I entered my workshop I hardly knew what the tools were for - quite a big shock. I have to start small and build up my confidence again but it's an uphill struggle.
This summer I hope to take up sailing my small dinghy again. My wife wants to learn how to sail and I'm part of a small local club. Fatigue can be a big problem when planning any physical endeavours. Is it all 'go' - or has it all gone. We don't know .... must dash now - a bit tired and groggy.
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