Encephalitis Support Group

Hi Jane,

My name is Ruth, and I too had Encephalitis years ago. I was also in a coma for 2 or 3 weeks. I would love to share and swap stories to get an understanding of this thing they call Encephalitis.

hi jane
My name is Tina. I too have or had encephalitis and not sure which type. I've just came across this site, and i thought that i was the only one, i am glad to see that i'm not and able to talk to someone that understands what we are going through.
take care and maybe we can talk about it.

Hi Janie, I am also 49 and had viral encephalitiis when i was 21. I also was in a coma and the residual effects of E reeked havock on my life - a living hell for years but there is hope and help. I am an old pro at E and seizures so I would love to talk with u and get to know u. Ruth is great - so please don't be shy about getting in touch with anyone that has had E cause we are willing & need to share also. God Bless, LadyEve (Deana)

Hell Janie,
My name is siena aka. twinky. 3 yrs ago I came down with Hashimotoes Encphalitis. Very rare. I pulled through with 12 hours left but the dr. figured it out and here I am. I am 38 (until Oct). :)
I would love to talk to you about E. It has changed my life so much and right now I am so angry about this. I cannot wait to meet.

Yeah we're here and I had this disease many years ago. I got rid of it. It came from a flu shot that I got and affected my Cerebellar or the brain stem. I couldn't walk straight, type right or see out of the extreme right corner of my eye because it was distorted. When I ate it felt like I was eating cotton balls. I finally got rid of it. There's lots more people here. If you want to compare notes I'll be glad to talk. galed

Hi Jane, My name is Judith. I got Encephalitis in the summer of 2006 too, and nearly died. Mine was also from the herpes simplex virus. I am new to these types of message boards but I am hoping to find friends who can share ideas about how to overcome the frustrating and debilitating effects. I have always been an active, self sufficient, working mom all of my life and now find myself having to live with my kids because of my difficulties with short term memory. I'm hoping to find others who have learned to overcome the memory issues and lead a full life. I hope to hear from you and others. Thanks for starting this thread!

Hello,
My grandmother Isabelle was diagnosed with Herpes Simplex Encephalitis about 4 months ago. She is 86 years old. We nearly lost her and her recovery has been very slow with many setbacks. My family and I are seeking any information about the recovery from HSE as it seems that there is little information about what to expect for an 86 year old. My grandmother was also in a coma for about 3 weeks. She currently speaks some but it is very hard to understand. She is confined to a bed. Our situation is so difficult because it's so hard to see her barely responsive when before she was such an active 86 year old. I would love to hear what you went through after awakening from your coma alongw with any other information you are willing to share.

Janie,

I would like to know more about your story. I have regional encephalitis for over 40 years from a major car accident and a fall.

This is my first time responding to any one and just found the website.

Hi Jane,
I just had my wife Brenda read your call for friendship. She and I went through Brenda having herpes encephalitis in April of 2007.
Brenda was in the hospitals for 44 days. She was in a coma for 17 days in ICU. We had our lives turned upside down.

We are three years after it now and are still adjusting to many changes. We have a wonderful support system from our church and family.

Our faith in God sustained us. We are so blessed. I, Marcus, Brenda's husband did get my wife back. She was wonderful before, but now God has made her even more wonderful. She is different. We celebrated our 36 wedding anniversery this past June. On Brenda's birthday our children gave her the gift of having her picture taken with the family. I have attached the picture of Brenda and I with our 8 grand children. They are all age six and under. We are enjoying every one of them.

We hope this note will encourage you. Please feel free to e-mail us or respond. Brenda and I will share this site.
Marcus and Brenda

Hi Jane, my name is Sunny. I had this horrible thing in 2005, was in a coma for 3 to 4 days. Has really messed up everyday life. Would luv to talk to about your experiences.