Acute Disseminated Encephalomyelitis (ADEM) Support Group

Has anyone lost speech completly due to ADEM and got it back?


#1

Hi
My husband started showing symptoms of ADEM from 14th May and his condition deteriorated in 4 days. He was started solumerdol from 4th day and was put on IVIG from 5th Day. The first symptom was slurring in speech which developed further into total inability to speak , confusion and changed behavior. Right now he is alert and is responding to some extent. I am not sure if he exactly understands what we say or not. He has spoken few words since then. But the words are sometimes not clear and sometimes seems to be in different language altogether . Has someone else in the group had similar symptoms ? If they were able to recover from it ? I am feeling depressed and restless. Please tell me if adem induced aphasia can be treated?


#2

When my daughter at 30 yrs old went down with ADEM at end of 2015 very quickly, one of the early symptoms was being unable to swallow, then her speech went plus everything else. She was sent to Royal Free Hospital, London, where there was a great team of specialist physios who helped her re-use her limbs together with a speech therapist who helped her speech return. Her speech was normal after about 4-6 weeks but she then went into neuro rehab centre in Garston for another month which helped her enormously. She still has some remaining problems with Utthoffs, fatigue, Optic nerve damage and bladder nerve damage but she remains positive and back at work for 4 day week. Hope this helps.


#3

Hi Kathy,
Good to hear that your daughter has shown great recovery.That gives me hope.I wish my husband too recovers soon.

Thanks
Nidhi


#4

Hi, yes that was one of the first symptoms my wife suffered, along with rhs paralysis of the body from leg to arm.
She recovered speech after being brought out of.induced coma after 4 weeks, and slowly started talking again albeit she wasn’t sure who we were when she came round, which sorted itself a week after

After 5 months in cardiff ruh and then Rook wood rehab she made a good recovery, short term memory, rhs haemenaopia vision loss to one side of each eye, balance problems and fatigue are permanent 8 years on.

But speech is fine now,
Doctors had no idea what caused it, tough times which affects everyone, you need some moral support from friends and family but wish your husband a speedy recovery
All the best
Richard


#5

Hi Bikerbriggsy
Thanks for your reply. I am happy about your wife’s recovery but sad to know about vision and memory issues. Is she able to join back work ? We have small kids and our family is financially dependent on him but nobody can predict after how much time and to what extent he will recover. Just hoping some miracle .

Thanks
Nidhi


#6

Hi, my little granddaughter has been stricken twice. The first time was 3 days before Christmas 2015, she was 3 1/2 She was left with many deficitis in vision, speech and coordination. She was in picu for 4 weeks and rehab for 9 weeks.
Then this past January she had a relapse.
She was in hosp. for 14 weeks. She is still unable to talk understandable words, her walking is very bad. Her mood the first time around made her very volitale in her mood. She was very labile.
She is receiving Pt. ot. sPEECH THERAPY There is a doctor in Pennsylvan9ia that I want them to take her too. Just for another opinion. What are latest protocols? etc. Main thing is to always have hope. Look this malady up online and find out the docs that are making this a field of study and writing protocols. Good Luck.


#7

Hi nidhiJ
See the Myelitis.org page. Click on “Resources”. There are several symposium videos for rehabilitation, info etc. They are great for yourself & family to watch. I have found them most helpful. Most of them do relate to ADEM, TM & NMO. Best wishes, Natalie.
https://myelitis.org/living-with-myelitis/resources/resource-library/?fwp_type_of_resource=symposium-videos


#8

Thanks Natalie…I also want to know if anyone was incontinent after 3 months of adem attack. My husband is off catheter now but gets agitated and angry if we keep asking him if he needs to use bathroom. He sometimes uses bathroom on his own, sometimes when we ask him but still a lot of cloth wetting. I Dont want to keep him in diapers all the time as it may cause infection. Any idea how to toilet train him quickly ?


#9

Hello, nidhiJ
It’s been about a month since we last heard from you. How are things going now? How are your twins coping with their Dad’s illness?
Please let us know, I’m sure people here will be wondering.
Seenie


#10

Hey Thanks for your concern. Its great to hear back. Things are definitely better after 4 months mark. Now my husband is walking , talking (though he slurs), mostly continent during day time . Though he is still not independent . His restlessness and aggression are also getting better.His behavior is very much different than it used to be earlier. He doesn’t have much energy to do things , has difficulty in writing, cannot focus on reading more than few lines and finds difficulty in doing simple arithmetic. I hope he recovers fully in next 2-3 months and is able to join back work .Twins are happy that now their father started playing with them. Sometimes he snatches their chocolates ,teases them and behaves kiddish. But they are mostly happy with it except some meltdowns.

Thanks again for all the support .


#11

Glad to hear that there’s progress. I don’t have personal experience with ADEM (I just work here … :wink: ) but I understand that recovery can take a while. It sounds as if, with your patient love and care, and being surrounded by family, he is making progress. May he continue to get just a bit better every day!

Please don’t forget about everyone here: one day you will drop in to visit and someone will have a story, and questions, similar to yours. When they feel all alone, you will know what they are going through. They will appreciate your reassurance, just as you received strength and hope from the good people here.

So good to hear from you again, Nidhi. All the best to you, your husband and the whole family.

Seenie from Moderator Support


#12

Thanks for all the support. We still have a long way to go as he is still far from being independent :frowning: .I just hope he recovers fully and become the same jolly loving person he used to be. I will always be happy to provide any kind of information/assistance to this group .Prayers for all those hit by this disease.


#13

Glad to hear there is some progress. Please keep us updated. Lynn


#14

@nidhiJ
Hi Nidhi , how’s your husband doing now ? My sisters husband is in hospital as he is diagnosed with ADEM and can’t speak or move his limbs . Looking for some
Hope. Sending positivity and prayers .


#15

Hi there,
I have not posted in here for quite some time. My husband Robert Bartik had a very serious attack 11/2015. He was in a coma for about 7 weeks and lost his speach, his ability to walk, his ability to breath on his own. He could not eat and had a feeding tube. Three years later exactly he is still working hard at improving. Sometime he speaks clearly and sometimes he seems like a child. He has lost much of his memorys and has very poor short term memory.
BUT He is still improving every day. I have hope that he will someday at least be able to walk a few steps so he is able to go to the bathroom and gain some independence. I don’t truly know if the speech will return completely but he can read, he does understand.
The best treatment I have found is just to keep working. There are some good apps you can put on an ipad and I am happy to give you any suggestions or things that I have found that can help. I am so sorry that you are going through this.
Kris Bartik