Thanks for the update. I will pray for her continued recovery. She is blessed to have a friend as caring as you to be there for her. Take care.
Hi Sarah just to say there is damage to the ‘actual’ brain. I have brain lesions, spinal cord lesions and damage to the myelin sheaths.
That IS ADEM!
Sweetie, my daughter has been in hospital since July 1st 2016, I can totally relate, Stanford came up with a diagnosis finally for my daughter saying she has Susac Syndrom. But everything your friend is going through is exactly what my daughter is going through. she is still on breathing trach vent, and PEG for food. I am very very scared for her right now.
This disease is awful. My granddaughters anniversary is on Dec. 22. It will be 1 year Tomorrow she has follow up MRI to see about lesions. I can feel and hear the concern, and fear for our loved ones. I will keep all in prayer. I will say that even though my gd had a very severe case (9 1/2 weeks in hosp) she has been making progress. Very tiny steps at a time, but progress non the less. She was in a coma, blind, mute and unresponsive. Now, she can walk (not completely stable), talk (response time is very slow), vision has returned enough for her to pick up a book and look at pictures. This is all a miracle to me. She has pretty significant behavorial issues which were not there before, but we are hopeful this too will improve. Never give up hope. Stimulate with music, reading, touching…
Hy, early May, my son was diagnosed with ADEM. In this August, CT Scan showed a good development in his brain, doctors say his illness is healed and treatment for ADEM has been discontinued. But since mid-May until now, his condition is still unconscious. How long will it take for someone to regain consciousness(sometimes he opens his eyes but blank/ cant recognize anything) after ADEM attack? What should I do to help speed things up so that my child can quickly become aware? Thanks a lot.
I was diagnosed in '09 . I was in a coma for only 2 weeks but spent 2 months in the hospital. I was reading you say you opened your friends eyes and they seem to see you. That makes sense to me and hits home because I remember things from my coma I shouldn’t. People visiting or thing people would say to me while in the coma. I was a 32 year old mason when my illness occuered but the best possible way to explain and describe it is cartoon world for me. Conversation s that were had in my room I remembered but projected them in my head to be taking place in differt surroundings. Surroundings I’ve never actually been like the rainforest in a jungle or desert was one too. These places I “dreamed” up I believe to be directly linked to the conditions my body was in for instance the desert I believe is because my mouth was so dry attimes bbecause everything was given intervenis lay. I recommend you keep talking to your friend my belief is it truly helps
Hello. I am new to the site and have been looking for cases similar to my sisters, Kaye. Your friends story sounds a lot like hers. I hope she has made some kind of recovery. My sister was 35 when struck with ADEM in Sep 2016. She had headaches and an upset stomach but within a week became incoherent and couldn’t walk. She went to hospital on a Sunday evening and by Monday was in a non induced coma and by Tuesday on a ventilator. About ten days later she had a tracheostomy. She remained in a coma for 5 weeks and stayed in a vegetative state until feb 2017. Her ventilator was removed in March 2017. She had suffered extensive damage to her brain and brain stem. When she emerged from her vegetative state we soon discovered that she had full mental capacity but she was completely paralysed, she couldn’t support her head and we were told that she probably never would. She couldn’t eat, drink properly as her swallow reflex had been affected. Her speech was very slurred and it had also affected her eye sight very badly. The only thing it hadn’t affected was her hearing and her mental capacity. She has been slowly making progress. She has some use of her right arm which is improving all the time and her left arm is now showing very small sign of movement. My sister was in a coma/vegetative state for what is deemed a long time and her prognosis was very poor but so far she has proved (although slowly, which she finds very frustrating) the professionals wrong. I hope your friend has made some kind of improvement and if she has I would love to hear how she is doing. It is hard to find other people who have had ADEM at the severity that my sister had it and survived. It would be lovely to hear some stories of recovery from people who have suffered as Kaye has, because I really need to give her some hope.
Hi Kitty. Were you aware that Victoria Arlen, Dancing with the Stars contestant, had ADEM & was in a comma for 4 years. It’s a very interesting & encouraging story…not to mention something of a miracle how far she has come!
OMG!! Malinda that’s incredible!!! No I hadn’t heard of this lady I’m in th UK so don’t really get to see this program. This has given me a huge boost of hope! Do you know if anyone has ever contacted her? She’s on FB. I might send her a message. Even just to tell her how inspiring she is!! Thank you so much for this. My friend Aude has started to communicate more. The physios have managed to get her to say a few words. It’s slow progress but going in the right direction. I’m just really desperate to find a way for her to communicate easier. I know she’s in there trapped in her own body. Absolutely convinced!!! Again thank you so much!!!
K xxx
Hello. How long did your recovery take and and at what stage are you now. My sister was in a coma for five weeks and vegetative state for four months. She was 35 when it happened in Sep 2016. It affected her mobility but not her mentality. She was completely paralysed, her optic nerves are severely damaged and her speech is very slurred, she has dysphagia, so needs thickened fluids and a forked mash diet and she is constantly fatigued. She is dreaming of walking again but she still has no feelings in her legs and can not sit unaided. She is making progress but it is painfully slow.
Zora
Hello everyone
This thread has been “dormant” for quite a while, but I’m wondering if anyone could be so kind as to reach out to one of our new members?
@Prestopp came here because she has a family member who is in a coma. If you’d like to read the profile, just click on @Prestopp. Prestopp, you should be able to go to this thread by clicking on
You know how difficult it all is, and how much it helps when someone listens and then says they understand.
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