Hi, my friend's been diagnosed with autoimmune encephalitis in Dec. and have been back home for 5 weeks now, his short term memory is very bad, and I'm hoping it's still early on in his recovery. It is so hard and so sad to see him like this, because he was so full of life and a workaholic. His fatigue is bad as well , sleeps a lot since he's been back home. We want to help him but don't have a clue where to get help or how? The hospital did not offer any after care! I have looked into CBT, (cognitive behavioural therpy) has anyone used this route??
Any help to help him will be great.
Wishing you all well
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cheny
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Hi, everyone is different but I had Viral Encephalitis and was discharged from Hospital and thought I was getting better, the fact is I suffered short term memory issues, I forgot all my PIN, logins to email etc. suffered from extreme fatigue, couldn't get out of bed, no energy / fatigue etc some may say classic side effects! Please be patient with your friend as the best thing they will need is support in many ways as this is a major attack on your friends body and dependent where the infection was they may yet have other side effects. Initially a regular sleep pattern is important, easier said than done, small regular activities to stimulate the brain, I couldn't follow simple cooking tasks, getting confused with the order of recipes and paying attention to one aspect and forgetting the others. I know the weather is horrible but a short gentle walk helped me, I fell asleep when I got back but what the hey! Important that your friend feels that they are not alone as people don't feel comfortable talking to you as they don't know what to say and you have trouble articulating things hence say nothing. The Encephalitis Society have books that try and explain all this and also they cover the family to suggest things to do. All I can say is that this will take time but small steps will help, do not expect things to return to normal, hopefully you have an understanding GP (when they see you with the Pandemic etc), but take things as they come. Good Luck
Thank you ASH1956 for you kind words. He is struggling with extreme fatigue and I hope this will pass with time. He is so frustrated and depressed with his short term memory loss.
He’s definitely not the man he once was 😔
I’m staying positive for him and helping him as much as I can x
Hi Cheny, I must confess to having the exact same issues at the outset, I ran my own business in I.T. and this undermined who I thought I was and what the future held. The issue with what people describe as short term memory is an expect of Executive Functions of the Brain, this can seem to be seen as Short Term Memory but extends to understanding and assimilating new things, holding the thread in a conversation, seeming to not be able to make decisions, being "Vacant", people say you are dreaming or not interested. Also loosing interest in things you used to enjoy, staring at the T.V. and when asked couldn't relay what I just watched. This does get better over time but you have to work at it, patience and support is very much the order as my Wife was frustrated at me when I asked the same question or couldn't keep a conversation going but couldn't explain why. Fatigue will get better but your friend has had a real kick in pants and as I wasn't told to expect it it made me very depressed and anxious. Happy to answer any specific questions you have and good luck !!🧠
I find practical methods to be the best. I use my telephone alarm to remind me to have injections and tablets, I use the phone calendar to remind me of appointments and when my prescription is due (set it for 4 weekly so you will never miss it) another date to remind me to collect it a few days later and to remember pins i put fake telephone numbers with my pin at the end of the number. It's not like being your old self, but you actually forget that you've forgotten. Sorry if that sounds weird, but that's how it works best for me.
Hi Cherry. You're very welcome. Would you please post your friends progress on here, it'd be lovely to see hos progress and to know what he finds works for him. I wish you and your friend all tge very best for the future. You're such a wonderful friend to look for ways to improve his life xxxx
Thanks for sharing your story. Firstly, everything you've mentioned is really common after encephalitis and especially seeing as he is only five weeks out of the hospital so he is very early on in his recovery! The good news is it should get better with time. Your friend's brain has been through a lot of trauma and it's going to take time to heal and recover, just like a broken bone although as it's the brain which is so important it will take longer but things will get better.
My best advice would be to listen to your friend when he feels tired, anxious, or has any pain. This is his body telling him he's got to do something to help himself such as have a nap, talk to his doctor about pain management or speak to someone to get some extra help. However, he is new to this too so he may not be sure what he needs help with and how!
I know you mentioned he is struggling with fatigue so there is a useful fact sheet on the encephalitis societies website: encephalitis.info/managing-...
Also, you mentioned he is struggling with memory loss my best tips would be:
- Use your phone for reminders/alarms
- Keep a diary to keep track of days and tasks
- Use sticky notes around the house to help you remember where things are
- When he is feeling up to it, try doing some simple word searches and puzzles to help his brain practice using memory again
- Pace yourself, this might not be easy now but things will get better over time
There is a gap in after-care that when you are discharged generally patients are left to come to terms with what has happened to them on their own. However, there is no rule book on how to deal with a serious illness like encephalitis and now a brain injury so go easy on yourself as his friend, and your friend should go easy on himself too.
I think it would be useful to link in with your doctor/consultant to see if there are any support services available for rehabilitation such as occupational therapy, physiotherapy, or even counseling to help come to terms with what has happened.
Relating to others and knowing you are not alone is a great source of comfort and support. Have a look at Paul's story:
Thank you Ocean96 for the useful info. I will go to his GP and ask for help and see what they can suggest, everyone says it’s early days into his recovery, but to see him upset depressed and frustrated, Just makes me determine and get as much info as I can to help him.
Encephalitis Society has been a great help and reading others stories gives me some sort of hope x
You sound like an incredible friend! I know things are tough right now but it's amazing you have reached out for help! I hope your GP will provide some help!
Dear Cheny. My partner and I are 6 months in. Same situations as you. Autoimmune encephalitis. Every case is different but the first months were the worst. My partner’s short term memory was very bad. We had many repetitive conversation and his fatigue made him sleep many times per day. We are. Or out of the woods yet but memory and fatigue has improved significantly. Having a CBT therapist is a great idea. We got one from the NHS but time is the big healer. We started by having a putting each day - hour by hour - in a excell schedule which was really helpful to get a. Feeling of achievement and structure. Now we run a more informal notice board in our kitchen with ‘tasks for the day’ for both of us. This looser structure shows the immense improvement in my partner’s health.
Thank you for your encouragement, yes it has been hard and so upsetting to see him like this. He’s been sleeping most of every day he’s been home and he gets so frustrated with his short term memory. I do and so hope it will come back, and I also know he is still early on into his recovery! We are still waiting to see his consultant to see where or what needs to be done for him.
Is your partner still seeing a consultant??
It would be lovely to chat to you as I can see we are in similar situations. Would be very lost if there was no forums like this.
Here in the US, some speech language pathologists can offer a sort of "cognitive therapy" that helps one evaluate their cognition and implement strategies to get around things like memory troubles. I found it to be more helpful than CBT, as my cognitive issues weren't mood related.
I thought I had replied earlier to your post but after looking through the responses it appears that I forgot to send it.
Unfortunately, I’m not surprised. I forget things.
I am just past 2 years from leaving the hospital after a 2 month stay for Autoimmune Encephalitis. I have improved a lot but I still have some issues. My short term was very bad, but is a lot better now. I can do most things, drive, keep a difficult job, etc. and no one except my family could tell I went through a difficult time and even my family says I’m “back” as far as they can tell.
My memory is hazy about the last 2 years and hazier about time before that. My neurologist told me that for a while I “could not create memories” so there are gaps that will never be filled. I was a workaholic too and lost my job while being sick, was out of work for a long time, got another job, lost it, got another job, got fired, finally got yet another job I’m working at now. I put a lot of my identity in my work life so that being gone was a big issue, not to mention being worried about money.
I don’t remember a lot from being sick, but I remember some things. Terrifying anxiety was one of the worst symptoms. I would forget a lot too. I wouldn’t remember what had just happened 5 minutes before like if I had just eaten or whatever. I slept a lot too. I read somewhere that encephalitis is sometimes called “sleeping sickness” and that was true for me. My wife would have difficulty waking me and I napped all the time.
After the Mayo Clinic figured out what was wrong with me I got the right treatment and started improving. Its been a long road and I feel I still have a ways to go but I know I am improving. The thing that helped me improve the most was reassurance from my wife. She would tell me that she sees I am doing better and remind me of things I am doing that I was not able to do before or I have improved on. It is difficult for me to see improvements myself.
I remember my neurologist telling me it was “early days” after I had been seeing him for 6 months. Recovery takes time. That has also been a struggle for me. I may have looked ok, but my brain was recovering and that can take years. Since I looked ok, people thought I was ok.
As part of my recovery, I got an iPad. On it were loaded some “brain games” that measure things like short-term memory, reaction time, logic etc. I do those exercises every day. Some of the activities allow you to compare your score with other people in your age group. It is so rewarding and motivating to see improvement on my scores and to score higher than average for my age group! Its also nice to be able to do these on my own so no one sees if I’m having a bad day and score poorly.
It is very early days in your friend’s recovery. Stay positive, things will get better. Wishing you and your friend well. Hope this helps.
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A very happy (and long-overdue) update
Do you ever wonder what has happened To you?
Has anyone had viral encephalitis turn into autoimmune encephalitis?? 
