Acute Disseminated Encephalomyelitis (ADEM) Support Group

Adult case of ADEM


#1

Hello Everybody,

I'm very happy to see a site dedicated to people helping eachother cope with the effects of ADEM. My wife just came down with ADEM on October 28. She is 37 and was fighting pneumonia right before it happened. Since then, life has been a not so fun roller coaster for us. The good news is that we had very good care from Lahey Clinic in Burlington, MA. She is responding well to her treatements (steroids + IVIG 5 day course), and clinically she is doing quite well. She was able to get discharged to in-patient rehabilitation and is now doing out-patient rehab. Her main issues have been trouble speaking and writing, loss of movement on the right side of her body and some minor cogntive and memory issues. Luckily, she seems to be rebounding quickly. Now she has much greater control of her right arm and is definitely regaining quite a bit of sensation on the right side of her body. Her speech has improved greatly too.

I am curious if any adults on this website can share experience with disability benefits. Unfortunately, she was not enrolled in short term disability at her current job (major oversight on our part) as we relied on my own benefits. So, now she is unpaid and basically her employer is "holding her job for her". She is technically not on FMLA. The research I have done seems to show that she is in a strange position: she is not eligible for workman's comp because this is not a work-related injury, and it seems like Social Security Disability Insurance is not very applicable either because she hopefully will not be totally disabled for more than 12 months, but who knows??? Any experience you can shed on this would be beneficial. I have an appointment to speak with a SSA rep next Monday.

Thanks in advance, and also thanks for having such a great place to go to to talk about ADEM.

Ryan King


#2

Hey Ryan,

I was diagnosed with ADEM in September 2010 in Seattle. My speech was really effected and I had complete facial paralysis. I was drooling and was on a feeding tube. Now I am doing much better and have pretty much regained everything back but I am still working on the fine motor skills when it come to speech. I get better all the time and am even back to work with the Navy. It is a long road but it gets better all the time. I will elaborate in the future but I am tired so I'm going to bed.

Matt


#3

nice post