2016 Rare Neuro Symposium

Hey gang,

I’m going to the 2016 Regional Rare Neuro-Immune System Disorders Symposium next weekend to represent and push again for more research for Adult-onset ADEM.

If you have any questions, concerns, symptoms, treatments, etc. you want me to ask about, please let me know here or email me to ■■■■■■■■■■■■■■■. I’m going to be “the squeaky wheel.” I’m tired of every doctor saying to me, “Well, adults don’t get this, so I’ve no idea…”

Also, afterwords, I’ll post any links to new information for everyone. You can always go to www.myelitis.org for current postings. They’ve redesigned their website (I don’t like it - not easily navigated in my opinion), so keep looking through menus to find the info you’re looking for.

Thanks, LauraK

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Hi, thanks for doing all this. We all can benefit from your efforts. Did you see the article I posted in General, about ADEM and Zika? Can you ask for an opinion on the possible effects of Zika on us? Lynn

We just returned last night. I’m exhausted, so it’ll take a few days to get a post up with what I learned from the seminars.

The big thing for me is to change my diet and start moving. The seminar on fatigue mentioned that although it’s counter-intuitive, movement will eventually help with fatigue. Plus it will help avoid secondary issues that come from being sedentary. So I’m going to start with a 5 minute walk each day for a week and work up plus adding very light free weights for my arms.

This symposium was better for me than last year’s one in Dallas as the sessions seemed more focused on symptoms and treatments in general rather than on specific illnesses (because they never seemed to focus on ADEM.)

Also I connected with a few other folks with ADEM which was good, and we shared info and experiences.

More soon,


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I’m glad you had a positive experience. I believe nutrition and staying active, with at least some exercise has made a difference in my getting better. We must take care of ourselves.