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Rather than go into all of the residual effects I am experiencing as a result of WNV meninegal-encehphalitis, would like to know if anyone on this board had encephalitis as a result of West Nile I could connect with?
Pain Memory Falls Poliomyelitis Encephalitis West nile virus Meningoencephalitis
Hello Claire, and welcome to Encephalitis Global.
Please understand that feedback here is not from medical professionals... it is from people touched by encephalitis. You should first discuss your situation with your doctor.
One point is that you are still in the recovery phase post encephalitis. You may wish to check out the HELP! section at Encephalitis Global ( http://www.encephalitisglobal.org/id18.html ) to view more on this topic.
I had west nile meningoencephalitis in july of 2002, and am still suffering a myriad of effects from it.. while I am not a doctor, I have many experiences, good and bad, and am happy to talk to you or anyone who might benefit from having someone to listen! my e-mail address is likaloha@aol.com if you want someone to talk to, someone to listen etc.. I hope that you find the help you need, and this site seems to have lots of nice, caring, knowledgable people..Lisa
I had West Nile virus Encephalitis in Feb. 2003 and also am glad to correspond. My email is kynrhart@gmail.com.
Thanks to all that have replied so far. I found this web site quiet by accident. Just knowing that there are others out there who understand is a relief.
Hi! I am westnilevictim caregiver. Johnnie had west nile encephalitis in august 2006 and he is now slowly recovering. He is 100 % aware but can not move, eat or breath on his own. I (Jean-Luc) am with him 24/7. He enjoys watching tv, going to the park and to the movies. Every outing is a bit complicated but we can get it done. There is life after west nile encephalitis. Hang on!
good luck! Jean-Luc.
my husband was diagnosed with it just last month. he is getting worse, so they now think it may be WN Poliomyelitis. I need to talk to people also...this is so uncommon, people who are not going through the encephalitis just do not understand.
carmenmarielowry@yahoo.com
West Nile Virus Meningoencephalitis August 2005.
I'll be happy to listen Claire, blast away...
~hen
Claire, when did you get sick? What year?
~hen
I came home from work August 4, 2008 with what I thought was the flu on a Monday but by the following Saturday (August 8), was in a coma, on life support, and paralyzed from head to toe. I don't think I would have come through it without the support of family and friends. I have spent the last 14 months working my rehab (I am a "triple Type A") and can now walk with the aid of a cane but subject to nasty falls at which if I am by myself, cannot get up. I also have multiple other stuff e.g. tremors, emotional liable, etc. However, I am probably now at a stage where I am just now allowing myself to process the past 14 months which involves a lot of grieving as well as gratitude for coming through the illness. Therefore, wanted to reach out to others.
Congratulations on your achievements in rehab. It takes a lot of courage and will power to show up each day and to do the work it takes for that kind of recovery. I wish you the best in your post encephalitis journey, and yes, it does seem helpful to reach out to this community who may share some of your experiences.
Claire, go ahead and contact me at ronbartlett@cox.net. Sounds like we are in the same boat. -Ron
It's a shame to see you take this discussion offline and away from the group here. There is always something that can be helpful to others and that others can add.
Unless you're taking about getting together somewhere off the computer.
~hen
I haven't taken my discussion off line, I just don't really know where to start because I have so many things still going on e.g. tremors, balance, fatigue, pain, etc. I have re started PT and OT to see if I can learn to get off the ground by myself when I fall and I have started a couple 1/2 days /week volunteering to get me out of the house. I am trying to focus on what I can do and how far I have come verses where I used to be. I do have mild cognitive issues (mainly short term memory) and really work on not feeling sorry for myself. I guess I would say the biggest helps have been the wide support system I have with family and friends.
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