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FrBob

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1 reviews

Review for Encephalitis Global, White Plains, NY, USA

Rating: 5 stars  

I joined Encephalitis Global in February 2011. Ten months prior I was in a coma and had been diagnosed with Meningoencephalitis. This illness left me with memory problems, speech problems, problems walking, weakness down my left side, constant nausea and vertigo and severe fatigue. Returning to functionality has been hugely challenging and, for the most part, lonely. No one around me knew anyone who had survived Encephalitis.

Then my wife and I discovered Encephalitis Global. It was like a homecoming! Suddenly there were 1,000+ people who knew what I was going through as a patient, and what my wife was going through as a caregiver. The comaraderie has been immensely strengthening and encouraging. I don't know what we would do without E Global!

Thank you Wendy and Ingrid for your perseverence for the past 10 years. It has paid off in my life... and in the lives of countless others.

I've personally experienced the results of this organization in...

My regular contact with other survivors of Encepahalitis has helped me remember that healing from an aquired brain injury (ABI) takes lots of time. My "Encephalitis Global Family" has reminded me to count small successes as important steps in the right direction. They've affirmed me in my progress and, thus, raised my level of self-confidence. The people on Encephalitis Global understand how discouraging, even infuriating, mental confusion can be. And they've helped me not "throw in the towel" and give up.

If I had to make changes to this organization, I would...

Encepahlitis is a fast moving and devasting disease. Those who are diagnosed quickly stand a much better chance of survival with minimal impairment. I want to help Encephalitis Global develop a national initiative to education and train primary care physicians, ER doctors and those who staff urgent care facilities how to diagnosis Encephalitis early on, thus saving lives and minimizing suffering.

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

How did you find this group?

I found this group through a Google search for Encephalitis.

What, if any, change in your life has this group encouraged?

This group has given me a possible new direction for my volunteer time and energy. I want to help Encephalitis Global alleviate suffering -- both the suffering of isolation brought on by the illness, as well as the direct physical and cognitive suffering of this debilitating illness.

When was your last experience with this nonprofit?

2011

Role:  Client Served & After one year I returned to work as an Episcopalian Priest, though working fewer hours.