Acute Disseminated Encephalomyelitis (ADEM) Support Group

ADEM attack and recovery process


#21

How is Kaye progressing now? I wasn’t hospitalised or paralysed but could barely walk, move & hallucinated for months & months. Mine was frontal & parietal lobe & all over in the pons, spine seems ok. The fatigue was extensive for well over a year or 2 but just did what I could, at times only 10-30 minutes at a time. I’ve improved heaps in 3 years & did daily neuroplasticity (brain training, learn something new every day to re-route your neural pathways). Best wishes. Sisters are great!


#22

Hello Natalie,

Kaye is still slowly making progress. She has a lot of movement in her
right arm, though not as controlled as she would like and just recently she
has gained a little movement in her left arm. She would love to have some
control of her trunk but that hasn’t happened yet. It’s a little hard for
Kaye to practice control of her arm, though she does, as her eyesight has
been quite severly affected. I tell her positive thinking and practice is
the key but I know it is terribly hard and frustrating for her.


#23

Took me a long time to use my left arm & hand, just no strength & kept giving way to anything in grasp. Same for one leg. Unfortunately some things remain, some slight improvement, some very good. I still have problems with one eye only but that’s because optical is part of the central nervous system. We can only do our best but the mental aspect is the most important. We take a lot for granted don’t we all! Keep up the good work & encouragement.


#24

Hello. Have your eyes improved at all from how they were. Kaye has optic nerve damage to both eyes, she has some sight in both but it is blurred,she is colour blind has no peripheral vision on the left side, she is hoping it will gradually improve a little because she can write, although child like but its hard for her to practice with such poor sight. Her brain stem was badly afftected, hence the paralysis. She has come a very long way considering were she was. She managed a little movement in her right foot yesterday. She doesn’t think that she will ever get back to how she was but i tell her that she is moving in the right direction. She finds it difficult to see visitors that are not very close family as she is embarrassed by her disability and speech. I have told her that positivity is key to her recovery.


#25

Zora, much eye improvement from onset but still blurred, although they tell me I do not have optical nerve damage, just disruption from the brain causing it. I had this checked twice with Optometrist also. Feel for you both, slow process but one small thing is a good thing.


#26

Your sister’s story is like my husband’s. My husband has been hospitalized for five months, making very small improvements. Your sister’s improvement sounds amazing. How long has it been since the distinction? What is the situation today? Is she still hospitalized? Looking for hope. I’m so scared. I will pray for your sister as well. (I apologize for my English)


#27

My sister is still hospitalized. Still on mechanical ventilation. A slight movement in her foots and hands. She actively talks (without voice because of Tracheostomy) and responds to commands.


#28

Hello Sharit,
I am sorry to hear about your husband, what is his name?
My sister, Kaye, became ill in September 2016, she quickly fell into a coma which she was in for five weeks, she was then in a vegetative state for four months and emerged in February 2017. She was in a rehabilitation ward from Jan 17 until May. She then moved to a nursing home where she receives speech therapy, occupational therapy and physio. We were given very little hope from the doctors as to Kaye ever making some form of recovery. She Kaye has recovered movement in her right arm, though not fully controlled. She can move her left arm a little and very recently can make a small movements in her right leg. Her speech is slurred and she has to drink thickened fluids and finely chopped foods. She has full mental capacity. when Kaye first emerged she was very distressed and she was put on the opiate fentanyl. this drug made Kaye worse, she was having nightmares and she couldn’t even function enough to speak, we asked for the drug to be removed. it would definitely have delayed any progress.

please tell me about your husband, how he was and how he is now. I am happy to correspond with you. it is so sad that these things happen to people. Stay strong, I truly hope things will get better for you both.

zora


#29

Hey Zora,
my husband’s name is Danny. He is sick since September 2017. He was in a coma for a week and a half. He was on a respirator machine , and when he opened his eyes after a week and half he only stared, He was not aware and could not move his body. He had severe seizures. I think it prevented him from getting better. He actually stayed in the hospital for five months while being on respirator machine . About a month ago he moved to a rehabilitation hospital. He is getting physiotherapy and occupational therapy. he is now breathing on his own and i can see improvement, but at a Very slow pace .Now he moves his hands, Especially the right hand and sometimes the left hand, not in a controlled manner. He started to move his legs and his head, but his staring gaze is tilted to his right side (I do not know why). he gets food and drink through a tube. He does not respond consistently. There are times when he’s really attentive and responsive and sometimes he is not. I noticed that he does not sleep well and continuously. what are your sister sleeping habits, since she woke up from the coma?
my husband is a very energetic person. It’s hard for me to see him in this situation.


#30

Hello Sarit,
Kaye emerged from her vegetative state a little over a year ago, which she was in for four months. Her sleeping when she emerged was very erratic initially. She was very distressed and had terrible nightmares but we believe this to be because of the opiate Fentanyl that Kaye was prescribed. She was taken off of this drug, as we thought it was hindering any progress. Once this drug was removed the nightmares stopped. Kaye’s sleep pattern is now quite normal but she is constantly fatigued and needs to have a sleep in the afternoon, otherwise she can not speak or function normally. ADEM did not affect Kaye mentally, she still has all her faculties, memories and is very sharp, which means we can still laugh and of course cry.
Her optic nerves in both eye were severely damaged and she was completely paralysed but she now has movement in both arms but in her left arm the movement is very limited and she can not move it all the time on command, Her speech is very slurred. Apparently Kaye has made amazing progress from where she was but it is all still terribly slow.
Can Danny talk at all. How does her respond or communicate when he is responsive?
Kaye can eat but she needs a fork mashed diet and thickened fluids as she has dysphagia, She still receives more fluid, as she can not drink enough orally, and her medication through a feed tube.
Can Danny move his limbs on command or is any movement random.
I’m sorry if I have repeated myself from other posts.
Best wishes, Zora


#31

Sorry, I forgot to mention, Kaye had very severe, almost constant seizures when she first became ill, She bit through her tongue. She was literally rigid the whole time she was in a coma. She was placed on two anti seizure drugs which helped a lot and she has been free of seizures for over a year now and is no longer taking medication for them,


#32

hi my name is tony, I’m 23 yrs old . i was hit with adem February 2017, it has been a year since, yet i haven’t had much recovery after the 6 months period. i can move up to my fingers but thats where the nerve damage starts to show. my fingers/hands are very weak and i have lost mobility from the abdomen down. i cannot walk ATM. Has anyone else lost the ability to walk, i haven’t read much on here about anyone not being able to walk. i feel as tho i may not have ADEM


#33

My 4 year baby lost hearing last year 100% now little bit can hear but only big sound


#34

How is he now he got hearing back


#35

Hi Tony, ADEM from my understanding from having my son diagnosed only means an inflammation on the white/grey matter of the brain. Like an infection. Once you find where it is and begin treatment. Lesion may shrink and become inactive. I do hear about the spine which seems to be like MS. (My son had right frontal lobe). I do hear that it takes time but I do hear of some who make a full recovery. Get physical therapy as soon as possible. Good luck. Feel free to write back


#36

Hi Zora, Dani is now in a nursing home. I’m sad to see him there. We do not have an agreed sign for ‘yes’ or ‘no’ … He raises one eyebrow when he wants to show that he is listening. It is sensitive to the touch … responds with resistance, especially with the hand. He manages to even push us. He gives me back kisses. And sometimes he cries. His right hand is very active. But not willingly. I believe in him. And pray every day to succeed in doing something consistent … to talk. I’m very worried. It’s been a year … I pray he’ll be home soon. How is your sister? I understood that she was already talking … How was the beginning in speech? I wish everyone health. I hope everyone returns home.


#37

Hello Sarit. It is good to hear that Dan is making a little progress although it must still be terribly hard for you. Kaye had her tracheostomy removed in March 2017, about a month after she emerged from a vegetative state. She could only say maybe a word at a time. She speaks a lot more now, has full mental capacity, but because her muscles in her face have been affected her speech is very slurred and it is often hard to make out what she is trying to say and her voice now is very quite, like a whisper. She has an hour of speech therapy three times a week. She also has dysphagia but over the year she has progressed to drinking a little unthickened water during the day when she isn’t tired. She has some functional use of her right arm, which is a work in progress but because ADEM affected the optic nerve in both eyes, her eye sight is very poor, this makes it harder for her. She laughs daily though, cries too because she has lost so much but she has good family support. It is still so hard for her though. Kaye too is in a nursing home for the time being. Kaye has come a long way from where she was. We were told she would never be able to even support her head or touch the back of her head. She can do both with ease. Progress is slow though and who knows how far she’ll get. She receives two hours of occupational therapy and two hours of physiotherapy a week.
Does Dan still have a tracheostomy? Have is eyes been affected?
Please do not give up.
I hope changes happen for you both soon.
Zora


#38

Hi Zora, thanks for your reply. Dani without tracheostomy… For ten months now. His eyes look ok But his level of concentration is very limited. We’re supposed to do mri soon. Hope this will give us a clearer picture of his condition…
Sarit


#39

Hey ,

How is your sister doing now ? My brother in law have same symptoms now . I can understand how hard it must be for you to keep patience .


#40

Hey @Sarit

How’s Danny now ? I hope he is doing better . My sisters husband got similar problem and they have 10 months daughter . It’s so hard for me to see my sis so helpless . She is barely 25 and now dealing with this makes me cry . I am miles away from her in different country . I can’t sleep at night or eat anything for a week . I just want to see improvement, I want some miracle so all these patients including my brother in law suffering from this disease can recover in a month.