Hello everyone,my mother was diagnosed with HSV encephalitis three weeks ago and I'm searching for people who have gone through this. One week ago my mom left the hospital, she suffers from a very poor short time memory and many memories are missing or mixed up. She knows who we are, but for exmaple she doesn't allways know how many children we have, where we live or which one of her sisters is still alive. She knows the month, not the year and so on. Is there anybody who can tell me their experience with neurokognitive problems after hsv encephalitis?
Thank you, greetings from germany,
Sophia
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Sophia1315
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I'm sorry to hear that your mother is ill. What a frightening time for you all.
My husband had a different form of encephalitis in January this year. After his diagnosis and hospital treatment, he has been gradually getting better at home. He takes a lot of pills every day.
His long term memory is still very very good. He knows who we all are and can remember old computer passwords, etc. His muscle memory is absolutely fine so he enjoys playing the piano and can mostly look after his physical needs.
His short term memory is still very bad, though sometimes we see small improvements. He can make some new memories now, but they are often jumbled up. For example, he might say "I went for a walk with a friend this morning", but it was actually a few days ago.
Often he has to 'work things out'. So he doesn't know what day it is but he knows how to find out -- Are the children home? Is my wife at work? What does the calendar say? He is getting much better at realising he DOESN'T know and having STRATEGIES to work out the answer. It takes him longer to 'remember' recent things because he is actively putting recent events together to reconstruct memories. And with a broken brain, that takes a long time... but now he is able to get there
Tiring, though. Very tiring.
We don't know if his memory will ever work like it used to but we are finding good ways to help him be independent in daily life and keeping a sense of humour about things that don't go perfectly.
I hope there is some small encouragement here for you. Your mother's journey will be different. Don't lose hope! There is life after E.
Hi,I had HSV in 2020.What I would say is recovery is a marathon not a sprint.I was told how you are 2 years after E is good measure of recovery.This was absolutely true in my case. Tiredness was a big issue and still is.Sleep is a big part of brain recovery. My memory will never be what it was and odd words still escape but I m working full time and functioning well as long as slept. I also find little 'naps' in the day help greatly.You need to advocate for your mum to get right rehabilitation like speech therapy,Ot etc.Hope things improve.x
I contracted Viral Encephalitis in April 2017. When I was admitted to hospital I recognized my wife but did not know her name.
By all accounts I have made a good recovery. My initial anti viral treatment was brilliant but post recovery care was lacking, and if we had of received it I think it would have made a huge difference. My personal recovery insights are:
My emotions were all over the place .... sometimes crying at minor upsets. These has settled with time.
I needed more rest and sleep ... sometimes 'brain' rest was a quiet walk.
I had to 'work hard' to remember names and specific words .... making lists, playing games, and when tired I still can't find names. If I was missing two words in a sentence I simply couldn't continue talking .... it made no sense.
Family need as much support as suffers.
Info. on Encephalitis International is well worth reading. I live in the Highlands of Scotland and without this I would have been 'lost'.
Recovery slows but still continues.
I was very fortunate not to get clinical depression ... I had my down days but keeping busy seemed to work for me, but on occasion left me tired and emotional.
I was able to return to work and some close now say they would not know I had an acquired brain injury. Very positive but also I want people to remember that sometimes I still need a bit more care and support.
Hope this is useful and that your mother makes a good recovery.
Our recovery levels are all different, depending on how soon we were treated or diagnosed . But three weeks is definitely very early days for your mother .
A brain takes two years to create new neural pathways around the damage areas. In my first year, I would forget basics like turning a sink’s tap off . I couldn’t watch a film or read a book as I simply couldn’t recall a plot . I needed speech therapy to help me remember names of basic objects when I looked at pictures. Thankfully in my case, there was a real improvement in the second year of recovery .
Music was a wonderful help. I loved listening to music from the 80s and 90s, and I could even remember the lyrics to old songs. My husband put all my favourite songs on Spotify , and that stopped me from being depressive .
The Encephalitis International charity has a link with different people’s accounts of their recovery from Herpes Simplex Encephalitis. You might find this helpful :
All the above replies are exactly right. After 3 weeks I couldn’t read, write or walk more than a few steps. I used a stick for a year with weak legs and balance problems. Like Petecrane5 I was incredibly blessed by excellent diagnosis cand care. But only three neurologist follow up meetings. I didn’t get depressed because I didn’t really know what was happening! The common themes for those of us with a few years under our belts is - sleep and tiredness (crashes) still happen, especially after stress but much less frequent. Sleep doesn’t really recover, either you sleep too much or in my case badly. That’s the not so good news. The good news is that apart from the odd words or sentence muddles, no one except my husband would realise I’d had Encephalitis. Very very early days for your mum I’m afraid but baby steps will get her there. Also Encephalitis society Letter to my Brain will be really helpful to you both as she recovers. Good luck on this journey.
Hello Sophia , Get well soon. I had this five years ago. I can't remember what I felt or lived. But my family told me that I couldn't know my husband and asked him ' who are you?'. I couldn't walk or eat my meal, go to toilet etc. I couldn't go to work for two years but after that I started to work. My memories are lost.Only I have photos,my old diary,videos ,messages.... Your mother is very early. Your support is very important for her. I suggest that give support the way that your mother wants.
I'm Makbule .I have experienced for five years. My long and short term memory are bad. I can't remember my memories. I know the people from past but not the latest one. We can talk about that
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