I have had a very serious case of encephalitis that happened late in 2020. I’m really fortunate that I’m still alive and even more that I’m still recovering. I lost all movement in the right side of the body and slowly regaining it. I can walk without anything, the only difficulty is the ankle, balance a little and endurance. On longer distances I use a walker, and also use the bioness to help with foot drop, the bioness has been very helpful and worth price in my opinion. I’m reading a bunch of positive information on this group, and I want to inspire other as well hearing and spreading helpful information. I’m also interested in creating a e-book explaining my whole encephalitis, how I got it, the recovery stage and inspiriting others. I’m not sure on the process of creating a e-book or audio book but I’m very interested in sharing my experience.
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MaxYann
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Hey there. We sound a bit like E twins. Early 20s when sick. Late 2020. Almost died. Long recovery. Fatigue. Movement and walking problems. Drop foot. Etc.
Thank you for your kind words. Yes we really do, I have all those symptoms as well. I received it when I was 22 years old right before my 23 birthday. With the bioness I bought it for a therapist that specializes in it at Holy Cross, I could send the information from the therapist if your interested in it. The downside is the cost but I see it as worth it. You could also try it on to see if it’s a good fit cause a few people it doesn’t really benefit from it. Hope this helps you and look forward to hearing back from you!
Yeah, I was 24. Do you always have foot drop? I only sometimes have it, particularly when I’m fatigued or startled (I have brainstem damage that causes an exaggerated startle and various movement disorders).
How are you doing these days? We’re approaching the three-year mark!
That’s interesting, I sometimes don’t use it around the house, and my foot drop isn’t that bad. I mainly have cause sometimes my knee hyperextends when I have foot drop from stepping with the one foot. Which side of the brain and the body was affected for you? I have left brain was damaged meaning the right side of my body. Do you also sleep with a splint cause that’s way cheaper of an option as well that should help. I use both the splint when I sleep and the Bioness when I go out.
I’m doing great progress everyday. Just busy with therapy. I currently have PT, driving therapy, vestibular therapy once a week, and peripheral vision at home. I’m also focused on online school finishing up my bachelor degree. Should be done next semester. How are you doing, how everything for you?
I'm not sure which side was affected for me.. honestly, I think it was both because it seems lot of the inflammation was in the brainstem. I do notice my right side is worse for some things; that's the side with foot drop when I have an ataxic walk. I tried to sleep with wrist splints because of my movement disorders (hyperekplexia, myoclonus, dyskinesia, etc.), but it caused more pain when the involuntary movements were being restricted.
Oh my gosh, you're doing so much!! That is so wonderful. I had to quit school, so that's impressive you can work remotely. I also can't drive because of the startles (hyperekplexia). I don't do much outpatient stuff anymore, but I have some exercise equipment, including a nice recumbent bicycle here. I like to take outdoor walks, but I have to wear earplugs and use trekking poles because I startle from loud noises, sudden events, etc. I'm a homebody these days
Very interesting, my left brain stem was heavily affected. I also forgot to include that I also go to the gym a couple times a week and at the moment I’m using a walker to help me with walking. The bioness has very helpful in my recovery and walking. Hope the best for recovery!
Your recovery would definitely interest and inspire lots of people . The Encephalitis Society charity invites survivors to share their stories on their website , if that’d interest you ? The charity also promotes books by survivors who have written about their recovery on their website, too.
Yes I would really be interested in providing my story to this website. Does the link you shared provide how to upload my story and assist with making it?
I’m wondering if I could upload a video? Me and my family have watched a good amount when I was in ICU and beginning of the recovery. This site has been immensely helpful and motivating! I definitely want to help anyone that is recovering from anything similar!
What a journey you have been on. It’s very inspiring. You are young and I’m sure you will recover a lot more. This disease is not a sprint. That’s for sure. Thanks for writing.
I agree with all the comments so far. Love Tuesando comment. This journey definitely isn’t a sprint. I’m so sorry you, like Kit had this at such a young age. E is no respecter of age or anything else.
Today is my 5;year anniversary of the start of my own E challenge. To encourage you. I can now walk again normally, I couldn’t remember how to walk initially. Memory not bad. Speech back with random errors and wrong word use, which my family and I can now laugh about. Fatigue is a lot lot better. Still catches me out but I’ve learnt when to stop now. Well mostly! I’ve journaled since I was able to again, which has helped as I look at highs - there are a surprising amount- and lows and struggles So I would love to read your book too See how Encephalitis Society can help
Oh and welcome to our group. This is somewhere you are safe to chat knowing everyone understands and is on your side. Kit called us E warriors once A phrase that stuck because we are .
I'm the one who called us "E warriors" as I thought it's something more applicable to everyone. The fact that I was referred to as a "little fighter " when I was little and everyone here is a fighter in my opinion.
Because I had encephalitis the day after my first birthday I don't use the term survivor as it doesn't seem applicable to me.
Everyone has their own way of looking at life after E because we are all different.
Hi,The more information out there the better.In UK very little available and that includes many doctors.When I was in hospital they brought 12 trainee doctors to see me as said so rare to see if they could work out what I had just from symptoms.Was not put on a specialist ward and was on a stroke ward with largely over 70s. I discharged myself as ward was so bad with lack of staff.Safer at home with nurses coming in. Very little out there re E and Covid and Covid injections.After Covid injection they rushed me in with extreme headache and said no just Covid headache as had had E.3 months later had an episode where everything went apart from my hearing....couldn't see,speak,stand,sit up,lost control of everything. .they said paraplegic migraines as a result of Covid and E.Lasted 5 days and got to take meds for that now.Post E is a strange world and only real support in UK is this site.
Hi Max, I'm sorry to hear about your situation. Enc is very rare about ten cases per 100,000 so not many specialists and I found I did tend to draw a crowd when in Intensive Care and in an induced coma. Hospital wards can be a shock not all staff can be bothered.
I have not read a book on recovery from E but appreciate the comments on the forum. Going by my friends I would say that people generally are not in the slightest interested in a hidden disability. The best info on Enc and recovery is at Enc Soc website or via Google etc. Rest, exercise, good diet and no intoxicants. What I would do without the webnet I can't imagine.
In the UK your GP should refer you to a social worker who, if they are any good, put you in touch with supprt services, physio, psychiatric, dietary, psychology, speech therapy, disability support, blue badge etc. You can get assistance with transport to and from medical appointments.
I have a few other problems - thyroidism, spine fractures, immune deficiency, PTSD, anxiety, panic attacks and I have repeated UTI infections and sepsis. Covid was like flu, pneumonia just needed rest and IV penicillin.
I suffered repeated suicidal thoughts but just couldn't come up with a foolproof method. My wife would have been very upset and we get on very well. She drives and chaperones me when out and about. Noise, light, busy areas, travel are all triggers for me. An eye mask and earplugs help at times.
A Hidden Disability lanyard and a walking aid can alert others to your difficulties.
Now and again I can go hillwalking and then have to rest for several days. I use a TENS device for pain. I still wear a mask when at a clinic in case of coughs and sneezes. I no longer attend crowded events etc. I'm 73 so have had a go at life but Enc. is a tough cookie.
I didn't get vaxxed and was advised not to by the Doc - he said I had enough problems. It seems it was the best choice looking at many reports.
Open Office is free and is good writing software if you can handle the learning curve. You sound motivated - keep it up, it makes all the difference.
Just here to echo what G2 said about most not noticing or caring to understand hidden disability. I have to remind myself to not try to make others care and just stick with those who already love me.
Very good advice, sending texts and emails that remain unanswered just adds to the annoyance. They'll all be there when my will is read out. They'll be walking home.
Wise words from my brother, which relate to MaxYann ’s plan to share his story: “Don’t tell your story to make people care. Tell your story to people who care.”
Max, do it because it will probably help fellow survivors, but don’t expect non-E folks to care much. They usually only care about what’s happening in their own lives at the time.
Hi MaxYann,I'm so so sorry to hear that you are severely affected by the after effects of this illness. Its still only early days for you. Three years is not a long time.
I had Herpes Simplex Encephalitis the day after my first birthday and I was also diagnosed with Status Epilepticus at the same time, so I have never really given it a thought that I'm still alive (a bit like the average person) but I know that I have always taken anti-epilepsy medication all my life (I'm 29 years free now) and hope the next 29 plus years to be free too. I will share something here that I don't know what this means - doctors have said I have a "right sided spike" or something whatever that's supposed to mean.
I've always been a very anxious and paranoid person from the age of about 3 and I suffer from profound complex Obsessive Compulsive Disorder - OCD that is my disability. I improved over several decades and I'm much better than I was and I was always very patient with myself which is an important part of recovery, learning to be patient with yourself is one key factor to consider. There s no time limit on it, believe me.
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