Please excuse this re-post; I may have posted to wrong section of the website :)
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.
I just had to respond because I developed ADEM exactly one year before your wife (10-28-2011). I cannot comment much about the disability but I would strongly encourage her to apply for FMLA as that will protect her job for 3 months. In my circumstance I worked on Thursday and on Friday I was in the unit on a ventilator and in a coma. It was a very sudden onset and as I was not sick at all before they attributted it to the flu shot. Anyway once I was correctly diagnosed and they put me on high dose steroids I recovered quite quickly. I was in the ICCU for 10 days on ventilator, but once I got off the vent, I was only on the regular floor for 2 days and then sent home. I did home therapy and I actually went back to work within 2 months (started back 1/7/13). So I am hopeful for your wife that her recovery will be pretty rapid and she will not need long term disability. I was fortunate enough to have plenty of sick time accrued to cover me
Thanks a lot for your insight. I believe my wife's was triggered by Pneumonia. She is indeed recovering quickly, and maybe she as well will be back to work in January. May I ask, how long were you on steroids? They are slowly tapering off on the steroids and she has her first follow up Dec. 6. I'm wondering how long she will be on that medication because it certainly has its own side effects (especially lack of sleep!).
I was on the steroids for about 4 weeks after discharge, it was a slow taper. I know what she is going through, not able to sleep, etc. Plus for me the steroids gave me a very metallic taste in my mouth and everything I ate tasted metalliic, so I ended up losing about 10 pounds. My appetite returned though once the dosage of steroids was smaller. All in all I am so thankful that I have I have had a full recovery and am able to return to my normal life. I do notice I don't have as much stamina as I use to have, but I am 57 so it could just be my age!
Hi there! I was given the DX of ADEM 1st. I called disability but was told it would have to be a long term disability to qualify. So, I didn't do anything right away. When I went to my 1st appointment to speak to Dr about stem cell transplant for Multiple Myeloma, the social worker and nurses that I spoke with 1st were amazed when they saw me. They expected me to be in a wheel chair, drooling. Thankfully I was not. They got the ball rolling for me and said not to wait, I should be eligible for SS. I was approved in about 2 weeks. Good luck to you and your wife. PS When in the hospital with ADEM (8 Days) I was put on steroids IV for 6 days I think. No further steroid treatment. Repeat MRI of brain last Jan. did not show any changes from the original one. I said, "that means there has not been any healing". Doc said correct. I asked what I could do and he said nothing. That was the first negative comment I heard from him. Accepting that has been difficult. I keep trying. There are good days and bad days.