One thing I learned in my dads recovery with viral encephalitis is it’s not mostly seen here is Miami, Fl. I wish me and my family can sit with an encephalitis survivor and get tips on how to handle this. It’s been so hard on our mental state and it’s seems doors keep closing in on us. My dad will be released today from the hospital after having a seizure 4 months later when he was diagnosed with viral encephalitis, but will have to continue taking viral medication as a precaution of the virus coming back so he will have to go to a facility for 2 weeks till the medication cycle is over. The facility we would like to put him in has no room and others don’t have knowledge dealing with ‘encephalitis. It’s been so tough. I just want my father to get better and it seems like a long road.
Wish there was an encephalitis group ... - Encephalitis Society
Wish there was an encephalitis group based in Miami, fl
Hi Catmom8727
I can completely relate to your post . My mum was diagnosed last April with autoimmune encephalitis and it has been hands down the worse year of our lives . It really does take a toll on your mental health but what I can tell you is that slowly and with A LOT of patience it does get better . My mum is still in recovery in a neuro psychiatric hospital which is around 160 miles away from us .. it’s been incredibly difficult not being able to see her daily but she really is getting the help she so desperately needed .
Every visit I see little changes . I see just how far she has come but also I don’t expect miracles anymore . I was so worried for months that she may never improve because the recovery is painstakingly slow . I took advice from some of the lovely people on here and took each day as it came because there were some really dark days .. there still are times when I sit here and think why is this happening ? And will she ever be the same person again ? I don’t know the answers to either of those questions so all I can do is be patience , show my mum all the love in the world and accept that life may never be quite the same again .. but we will appreciate things that little bit more and learn new ways of coping with certain situations .
I believe every recovery is different but with the right help and support , slowly and I mean really slowly you start to see the changes gradually improve . My mom is still on a lot of medication . I often wonder whether they could be making her more agitated and irritable.. I have spoken to the doctor about this but they say she needs to remain on them incase the virus comes back . I really don’t know how long she should be taking the pills though without professional guidance . All of my mums hair has also fallen out over the last few months .
Anyway , I just wanted to say that you are stronger than you feel right now . It’s a seriously tough time for everybody involved and everything you are doing your father will be grateful for . Just hang in there and also make time for yourself . That is really important . I think you can get so emotionally involved that you forget that you also need to take care of yourself . Do the things you enjoy and reach out to people as often as you need to . The encephalitis society are fantastic !
I wish your father a good recovery and you take good care too
also I just wanted to add .. if you are not happy with any of the decisions been made on your fathers behalf .. please do speak out . My mum was discharged too soon from hospital ( after 4 months ) she received no help at home and we were all expected to cope . It was a complete disaster . We were stressed out to our eyeballs and none of us could fully function properly because my mum was just too unwell physically and mentally . We had to take her back to the hospital which was heartbreaking . She spent a month there whilst they found her a rehabilitation suitable for her needs . The one they wanted to send her to initially after doing my research , I found was rated ‘inadequate’ I thought no way in a million years is she going there ! It looked awful and I did not get a good feeling about it . I researched the second option and it just felt right . The staff are fantastic , the other patients are all women and she feels so much settled . They do activities all day and take them out and about . We visit her and are able to take her out all day so she can feel more ‘ normal ‘ again .
Always follow your gut instincts . If a place doesn’t feel right then speak up and be the best advocate for your father that you can be .
wow thank you so so much! I needed to hear this. I will keep your mom in my prayers. We are going through exactly that they discharged he went to a rehab facility who had no patience and gave up on him the mins he came home we were blessed with a physical therapist who helped him walk. Speech therapist was no help and that is what he also needed most. He progressed a lot at home, now him having a seizure has been a set back. He is currently in the hospital and my mom say she will not be able to handle him at home. So they are working on the care he needs after being discharged. I thank you for your reply it means a lot and agreed the encephalitis society has been my go to since day one.
First, I’d like to tell you that I’m praying your dad gets better every day- that truly DOES happen post encephalitis- day to day ups (and some downs) but please just know that it takes the brain a while to heal- like, 1-2 years. And new neuropathways do open up over time. I feel your anguish- as an E survivor, and former nurse researcher- I have learned that this disease can truly interfere with our everyday living. It’s such a rarity though. I mean, HSV encephalitis is 1-2/1,000,000, and chances are good that the other 1/1,000,000 isn’t living up the street! It’s like trying to win the lottery to find someone who “gets it”, but I do find that sites like this, as well as Facebook, are pretty helpful in not feeling alone, for caregivers as well as the affected people…
Your dad will get better and better. Just knowing that hopefully gives you and your family some much needed peace and comfort. Just take some deep breaths in knowing that!! (I could barely talk when I was so ill yet I went back to work educating health care providers! It can be done!!) Take good care!! 🙏🏻
I want to start off by saying your message was uplifting to me and my family. You gave us hope to be positive. You are amazing Thank you! This forum has been helpful and see your message truly was something I needed to see. It’s so tough to see a loved one go through it and the fact that it’s so long to recover feels never ending. I will definitely take some deep breaths and look back at this message as comfort. I am getting married in 3 months and he can’t stop talking about how he has to practice walking me down the aisle. It brings joy to my heart to hear him say that. 🙏🏻
Oh--- he will walk you down that aisle!!! The good news is- the parts of the brain that hold those needs, wants and loves - ain't all in that left medial temporal lobe!! Haha- never thought I'd know enough about the brain to even type that one day, but yeah...my daughter got married last year, and while I no longer could help with all the little "details", like who sits where, what time should we show up for pictures and where, etc...that new memory of her walking down the aisle (with her new-ish step dad- first one passed from cancer about 8 years earlier, when my two kids were in college, so they've seen a lot too...I got re-married and 6 months later, woke up and couldn't talk...) will last forever!! Life teaches us all some pretty big- and good -lessons- little did we know- with or without ABI..
Please keep us all posted and sending hugs...😌
wow!!!! That is amazing I really want to thank you for sharing. I feel like your response was the sign I needed. I’m so happy to hear you are doing so amazing and also what to thank you for what you do as a healthcare worker. I myself am a nurse and I love what I do. I do want to ask did you have any post encephalitis seizures??
I actually want to thank YOU for dedicating your life to nursing. It’s a big job, and I get that. I was never much of a direct patient care giver- my strengths were more research/education oriented, so bedside care - if that’s what you do- is something I need to acknowledge and appreciate, especially the care I received in an ICU…
Re: anti-seizure meds- my EEGs did show some activity so I was put on anti- seizure meds. But another thing I’ve learned is that I am pretty intolerant to meds…I was vomiting etc on depakote, so they put me on a couple of others and I was just sick to my stomach 24/7, so my neurologist took the chance of weaning me off, warned me what to look for re: active seizure activity- and thankfully 3 years later, I’ve been seizure free. I did have another EEG last year to follow up and there is still some abnormal activity but…I’m ok. I do feel it’s safer to be on meds though, if they are tolerable…has your dad had any “active” seizures?
oh, I re-read your post and he apparently does have active seizures…ugh. So sorry to read that…meds are pretty justified then.
Thank you so much! 🙏🏻 Ok so here is the story, after my dad was discharged home he was sent home on keppra gave him horrible side affects aggression, anxiety and so on. We didn’t think anything of it because we were aware that encephalitis can cause that. So after following up with his neurologist he kept him on keppra but the pill form of 1000mg it made him groggy and aggressive and my father was refusing the medication saying he did not want to take it. Because my mom is vulnerable right now she decided to not give it to him and leave things in gods hands. But then 3 weeks later he had his first seizure thank god with my mom around and did not last more than 5 mins. He was admitted to the hospital (currently still there) was put back on keppra and additional testing was done. The keppra continued to make him aggressive to the point that he wouldn’t let no one touch him for testing so he had to be sedated. Finally he was put on depokote 3 days ago he seems to be tolerating it well. No aggression just complaining he wants to go home lol. I saw him last night he looked like himself and even began remembering his relationships to us. Only thing thing he gets stuck with words.
PS- I have to add something...I was an RN/educator for 35 years- and, am on meds, doing all the "stuff" you're supposed to do to feel better physically/emotionally,etc. Yet...my new husband bought me a set of drums for Christmas two years ago...and all I can say is that they have helped me more than any cognitive rehab, counseling, drugs, etc. He actually listened to me joking that some day I will play the drums, and he totally surprised me with them, and I am now desperately addicted to them...and they have literally opened up neuropathways I never even knew that I had!! I am pretty good at it too!! So, there ya go..another "you just never know" tidbit. .🥁❣️🧠
Great news - thank you
Hello Catmom8727,
I'm so sorry to hear about your dad. Encephalitis not only affects the patient but also the whole family.
I am a caregiver to my husband. He came down with NMDA Receptor Encephalitis 2 and half years ago. This is a rare autoimmune disease that affect the brain receptors. I was totally unprepared when he came home from the hospital. He spent 32 days in the hospital. During his stay I was unable to see him due to COVID. I expected my same husband to come home. That was not the case. He was extremely tired, still confused, no short term memory, lost 10 to 20 years of his memory and has face blindness and ringing in his ears.
I would be up at nights crying and wondering how long it would take to get himself back to old self. I have come to realization he may never return to his old self however he has made great improvements.
Things that help me, a good support system, reading this website about other people who have encephalitis and their experiences, reading the book "Life after encephalitis". Listen to others who had any type of experience with traumatic brain injury. I also learned in order to take care of my husband I have to take care of myself.
I also learned to change doctors if need be. For example he was going to an ophthalmologist and I found out that he was having problems with his field of vision. I found out through his speech therapy group there was a neuro ophthalmologist that would be able to help him more. I made an appointment with the neuro ophthalmologist and he sent him to eye therapy which helped to improve his field of vision. His vision improved so he was able to start driving again.
I realize to help him, it takes repetition, time, patience and love. Here are some things that have help him ...... Keeping a calendar of daily events, a daily routine, getting out to walk the dogs. (this started a small walk and now he is up to 2 walks a day.) puzzles, card games, physical, occupational, speech and eye therapy. (He has been referred to these therapies several times during the past 2 years by his neurologist upon my request). I made videos about his past family members so he could watch them and learn what happened to them. This way I did not have to keep answering his questions over and over.
My husband has made great improvements. He can now drive. His short term memory is improving slowly. His sense of humor is back and he starting to cook again He can manage his own pill box.
After two years of infusions of Rituxan and Cytoxan, he is now on a maintenance medicine program of Cellcept for the encephalitis. He will be on the maintenance program for another 2 years.
I hope this helps you. Stay connected.. you're not alone out there.
Nebraska/Texas
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