Hello...so wonderful to find this site, you people :).
I am a mother and my son is William. He was diagnosed with acute viral E in April 2008. Origin unknown. One week in a coma...wakes up...can't do anything...9 weeks in hospital...home intense therapy to relearn everything; fine motor skills, gross motor skills, speaking, eating...everything.
Today - he is almost back to "normal" with the exception of ataxia and concentration. His brain damage effected his cerebellum and has created challenges for his gross motor skills. He uses a wheelchair and a walker with contact guard.
William has NEVER complained about his challenges. EVER!! What a trooper.
We have received conflicting prognosis...he will recover and walk again, brain inflammation takes time. Or...you might have to prepare yourself that this is as good as it gets.
I am so grateful to connect with others. Our journey has been unexpected and miraculous!
Meet William at our blog:
http://hamiltonsofphoenix.blogspot.com
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Where there is a Will....
- By darnencephalitis
- Posted June 20, 2009 at 3:12 am · 7 replies
- In Introduce yourself
- Shared with the public
- Edited June 20, 2009 at 3:16 am
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- By IngridGuerci
- Posted June 20, 2009 at 9:08 am
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Welcome to the group! William is amazing! So glad you found this group. Please ask as many questions regarding the residuals of encephalitis. We are all survivors of different types of enceph and our caregivers.
Ingrid/NYS
HSE 12/95 (I was 45 years old)
- By MichelleN
- Posted June 20, 2009 at 9:18 am
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I was taught many things again. I don't remember what that was, but my family was told many times I might not get better and that's after they were told I wouldn't survive.
Michelle
- By hoboswife
- Posted June 20, 2009 at 3:09 pm
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Welcome darnencephalitis,
I just wanted to let you know that your son is far from being done healing. Though the major healing happens within the first year, more healing is possible and does happen well after that.
Hoboswife-Kim
- By MaccaM72
- Posted June 20, 2009 at 4:12 pm
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Don't let any Dr's or professionals convince you that near full recovery is not possible. Most of us will always have residuals due to our experience but no matter the difficulties you have to let the human spirit remain strong. I was told many things by professionals that never came to fruition they started to seem that way but healing is possible and takes time. Granted some things they told me were true but there is always hope against everything.
7 yrs later and I am still learning about the new m'E' and limitations but nonetheless I still try to gain more of my "former" life back.
- By lemonplegde
- Posted June 21, 2009 at 5:31 am
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cheers to will and his family. Know that you are not alone in this.
tish
- By MichelleN
- Posted June 21, 2009 at 10:23 am
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I'm pretty sure I'm almost 5 years post E, but I am still finding I'm changing in good ways. The first year was the most visible changes, but people who met me in the last year say they have noticed changes for the better. Learning to walk was definitely noticable, but learning many things aren't as noticable.
Michelle
- By lemonplegde
- Posted June 27, 2009 at 9:49 pm
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welcome will and family. Thanks for sharing your photos it is so nice to put face to a name..sorry i don't have any photos up..but i just wanted to say welcome to this site and i hope you find it as helpful as many of us have.
take care,
tish
enceph 2003
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