Mallory: Viral Encephalitis Lived Experience Mike's story

Mallory gives a presentation via video link from the US on her and her family's experiences of encephalitis for our My Brain: My Story event at the Liverpool Medical Institute, 19th October 2019. Mallory's brother in law, Mike, was affected by viral encephalitis in October 2018, and Mallory talks us through his diagnosis, treatment, rehabilitation, and the impact on the family.


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[thirdmares]

my son 9 years old diagnose encephalitis and now we are struggling where to get money to pay the bills and medication... but i know God will make a way.. i need your prayers for my son fast recovery.. TIA

[HKPSGShooter]

I was 38 years old when I had viral encephalitis. It began with extreme confusion and agitation, ending with me falling out on my back porch with a seizure. I spent about 5 days in ICU on a ventilator, and then another 2 weeks in critical care, where I slowly started returning to normal.

Doctors were mis-diagnosing it as a psychiatric finally a neuropsychologist evaluated me, told me that the cold sore virus had attacked my brain and caused my 3 weeks of misery. I was sent home the next day. It took me about 2 or 3 years to really make a full recovery, but I'd say it was about a 95% recovery.

[brigettehinton]

I 100% agree there is an extreme lack of understanding and knowledge of encephalitis here in the US. I also was being treated for a UTI when I got sicker with also a temperature of just over 106! I did not loose consciousness but was confused and lost to your surroundings. I live now four years later with memory loss, extreme fatigue and confusion with tasks or communication. I am so happy your brother in law survived and was transferred to a better equipped hospital. The US needs more knowledge about this horrible/more common then we know illness. Bless you and your family 💜

[TheMancini]

I got it in 2016. I still need a walker, have large parts of memory gone. I was in the hospital about 6 months waking only a few times a day for a few min. Then they did a plasma exchange. As it was explained to me, I just woke up. It still took time for my body to relearn how to eat and digest food. And find the words I wanted to say. All these yrs later, I still need a walker. Bad balance. I am not aloud to drive. And if Im alone, I cant cook or shower. They say my brain now is probably as good as it will get. I do think and remember things much better in the evening and at night. I do have great family support. My husband, my parents, my adult children, and even my brothers. All except my son live within 2 miles with most of us on the same block. My son is accross the country. Thank god for family.

[Pete]

I was almost a month in the hospital in ICU on a vent in 2018, it took me months to somewhat understand what encephalitis was. I live day to day with issues that I dont talk about because who will understand me. I hope these videos can help others with post encephalitis to understand what to expect after survival.

[kirkb]

My wife was diagnosed viral encephalitis in 2009 and fully recovered she died in 2023 . It was a long hard journey…..very hard…..I only mention this because as the lady in the video mentioned a new normal……I wish the best to all of you

[lawrencehobson]

I had HSE. It was the most difficult thing I ever dealt with... and I still go thru constant effects from the consequences of the infection and it's been over a year. I'm lucky to be alive. I was also 38 years old when it happened, last year. Glad I made it to 39 and wish everyone who deals with this infection the best.

[lfctubes]

Hi, my wife was diagnosed with encephalitis about a month ago. It was started with a seizure and later she was put to sleep about 11-12 days to control the seizure from damaging the brain further. She also diagnose with a breast cancer 4 years ago and still ongoing with her chemo treatment on monthly basis. With this cancer has caused her immune system is very low and hard for her to fight the virus in her brain. Thank god she doing well now but only that there is some effect on her brain and sometime the communication is more on her imagination. I can understand that after a month with virus on her brain there is a lot of gap that she need to catch up. I just hope that soon she will recover fully. I would like to ask how long will the brain or her memory will come back normally like before. I pray everyday hoping she recover and can do what she used to do before. With family, friends around her hope the recovering process is more faster. As a husband I must be very patience and supportive. Thumbs up to all family members around the world who has taking care their encephalitis patient..you all the best..

[rhondaedmonds]

My son is 30 years old. He has had encephalitis of the brain for 20 years now, seizure on a daily basis. 20 different meds, separated hemispheres, 7 clinical trials. We send ❤️. We understand your struggles.

[escarletobando]

Wow thank you fir sharing this video. I can say I am almost in the same position as you. My brother in law is suffering from encephalitis. He has been 3 months in the hospital. It is so sad and scary. His case has been very severe it almost seems hopeless. I am trying to give hope and support to my sister. The hospital has told us they has done all they can and yet he is still very fragile, unable to walk or use his hand. Etc. It is encouraging to see that other people have recovered and have gone back to their lives.

[muhfux]

I feel for you bro. I've had to deal with this three times in my life. Having others around definitely is helpful

[TheRetiredVeteranPensacola]

I’m glad I found this video. My wife is currently on month 3 of hospitalization. It is very frustrating.

[miraclealvarez]

Thank you for your story my daughter has been fighting this decease for 2months now your video gave me hope she is 25 and has a 7year old i was so afraid of her not recognizing her son or me this has been the worst nightmare ever but thank you for video i am sitting in the hospital watching your video and telling my daughter she will be ok !!!

[kikecabrera]

Thanks for all your stories it really helps to read these stories my little brother is going through this it's really hard too see him through this but I have faith he will recover 🙏

[KeenlyClever]

Just to let you know I am so thankful of you sharing what happened to your brother in law. It is further motivating me, I also am dealing with encephalitis.affecting the brain. I understand how it is considered more of a new diagnosis all over the world. I am going to write this down ASK THE DOCTOR TO GIVE A BETTER UNDERSTANDING. I need to be understood that I need practice to further improve the various things that I do IN LIFE.

[mandycumberland]

Your brother in law is doing an amazing job, I know how hard is it as had Bickerstaff brainstorm encephalitis in 2014 . I was in a coma for 5 weeks and had to learn everything again too, which meant I had a 3 month stay at a neurological rehab unit till I was able to walk un added. 8 years have pasted and it been a journey that I didn’t want to take but I did and your right there should be more known about this illness as I have nerve damage, balance issues and many more and getting answers about what’s happened and how are questions that have no answers. Keep fighting it will not Define us x

[leecorum]

Glad to see the videos about encephalitis cause i needed it today for sure. I had encephalitis two years ago and have had a rough time since it happened and never new about it. It has totally changed me as a person i have some not so good results from it but i am alive and happy to be with my family. I agree there needs to be more research into this i still want more answers cause i has never heard of it till i got it. Much love to everyone 💙

[cindyherget]

Thank you so so very much for sharing your story.

I’m in Oregon. My daughter survived Viral Encephalitis Christmas
She was 9-1/2....
Now she’s a sassy 17 year old navigating high school and all the stress that brings her.
She has quirky quirks that make life difficult for both of us. But I’m grateful for life that she’s here and not in heaven.
She’s here making life difficult for me and me not crying all the time because I miss her.
As frustrating as it is to mother her so much I know it’s just as hard in her, because she’s the one with the brain that was damaged although physically she looks okay and seems to act okay most of the time, she’s still not at full brain processing age of general education kids her age. She’s like the little sister to most.
Liberty is loved by so many.
Although most thought she recovered, yes she did, to a point. No one saw her struggle for her “brain” to work right.
It’s nearly impossible to explain and the glitches.
Some day I’ll be able to eloquently write down all she went through (I went through, experienced). I lucked out and we didn’t loose her.

Thank you for your “American” story.

[johnboltman]

Thank you for an incredible story. I was diagnosed with ADEM (Acute Disseminated EncephoMyalitus) in 2003. I had almost the same symptoms as Mike, not knowing the source - we think it was either a tick bite or mosquito bite while on holiday Christmas 2002. I was comatose for 10 days and on life support. You story brings tears to my eyes, - I have been there. The hardest part of it was the withdrawal of my civil aviation medical, that broke my heart. However as you say, I am alive. (My father, sister and brother in law were all medical doctors, they though it was time up).
Thank you so much for making others aware of this terrible infection.
When my friend took me to a doctor initially (after my behavior had changed) the doctor suggested post traumatic stress, related to I still don't know how or why he reached that decision.
It's been 20 years plus now, I am unable to fly planes, however I hold a job down, - I have an adventure motorbike, I'm totally in love with it.

[penelopelambson]

I went through 8 + months recently with viral encephalitis with no medical care. Immobilized with horrible brain inflammation I was afraid to breath, turn over, sneeze, or even sigh, for fear my brain would rupture. The pressure in my brain was intense. It was terrifying.
I have been much better for 5 months as the pain is mostly gone, but have noticeable cognitive impairment. Word finding is sometimes laughably poor. The mental exhaustion is very dominant, recall is not good. Also experiencing apathy, depression. The months in bed has left me physically deconditioned and weak. The road ahead to rebuilding myself looks long. The strange part is that no one realized what I was going through. I was fortunate to have a milder case than many but it was nonetheless an excruciating and prolonged ordeal. I sympathize with all who have this disease.