Acute Disseminated Encephalomyelitis (ADEM) Support Group

Memory loss and bad hearing related to ADEM?


#1

Hi everyone,

I was diagnosed with ADEM in the summer of 2013. It infected my small brains (instead of the big ones as usual), so I had troubles with walking, any movement-coördination, talking, seeing (blurry vague sight), ... and I had to throw up everything I ate. So I lost 14 kilogram in 2 weeks.

The good thing is, I've beaten the disease and I recoverd "completely". That's what I though initially. Now, we are 2 years later and I have lot's of troubles with my memory and hearing. The last weeks were so obvious that I had to know if it's related to ADEM or not?

I'm a graduated Industrial Engineer and I work for the moment as a Project Leader. But because of my troubles with memory loss and bad hearing, I'm affraid to lose my job.

Can someone please clear this out for me? Please. Did you also have such implications? Thank you anyway.


Many greets and nice to meet you =),
Mark


#2

Hi Mark2x, my name is Lynn and I was also diagnosed in 2013. My symptoms were somewhat different. The biggest problem was that I lost all control of my hands; where I had to learn to use them all over again. Almost 3 years later, I'm doing well. I do have some neurological deficit; I now see things as black and white and the gray in a situation is no longer really there. I can be speaking to someone and the words just disappear...I call it a brain fart. As far as memory, it tends to slip away, but I am also 57 so that may also be a cause. I have also had some hearing issues all my life, so I can't say much in relationship to your hearing. What I can say is this...everyone has different symptoms. I try to play cognitive games on the computer to help with my brain function. By the way, I am also more emotionally sensitive after ADEM. If I were you, I would go with the assumption, that ADEM has had an affect on your hearing and memory and simply try to find methods to help you overcome. Look at the bright side...ADEM could have had a much worse affect on you. I feel blessed that I have come through this and am doing relatively well: I could be worse off. Take care, Lynn


#3

Hi Lynn,

Thank you so much for your reply! Interresting story, maybe some different symptoms. But the big lines sounds so familiar! Really really thank you for just telling your story. It makes me feel a lot better. It's just that I don't want to blaim ADEM for my memory loss and bad hearing. I don't want to say that to my friends and family. Because it's kinda easy to blaim it on that, without knowing if it's true or not. But I'm already fine with it myself. Just the fact to hear that there's a possiblity that it could be true.

I'm glad to hear that you're doing well. You sound like such a positive person!

Love,

Mark


Lynn said:

Hi Mark2x, my name is Lynn and I was also diagnosed in 2013. My symptoms were somewhat different. The biggest problem was that I lost all control of my hands; where I had to learn to use them all over again. Almost 3 years later, I'm doing well. I do have some neurological deficit; I now see things as black and white and the gray in a situation is no longer really there. I can be speaking to someone and the words just disappear...I call it a brain fart. As far as memory, it tends to slip away, but I am also 57 so that may also be a cause. I have also had some hearing issues all my life, so I can't say much in relationship to your hearing. What I can say is this...everyone has different symptoms. I try to play cognitive games on the computer to help with my brain function. By the way, I am also more emotionally sensitive after ADEM. If I were you, I would go with the assumption, that ADEM has had an affect on your hearing and memory and simply try to find methods to help you overcome. Look at the bright side...ADEM could have had a much worse affect on you. I feel blessed that I have come through this and am doing relatively well: I could be worse off. Take care, Lynn


#4

I try and stay positive...I believe that, in addition to a positive and support husband, is what helped me get through the whole process. Take care of yourself,

Lynn


#5

I take a huge amount of notes at work now. I either write them, or type them, or take them on my smartphone as recordings. That is how I cope.


#6

And what kind of things do you write down? I mean, what in particular?

Occipital said:

I take a huge amount of notes at work now. I either write them, or type them, or take them on my smartphone as recordings. That is how I cope.


#7

Hi Mark2x,

Here are some examples of what I write down:

- When I am by myself, my own private thoughts
- Every time I think that I want to do something (TO DO), at any time,
I immediately take a 10 second or less voice note. That will probably
end up in a calendar or a to-do list. It has to be less than 10s because
otherwise I will get impatient going through the notes. Also there are
often duplicates, so, shorter the better.
- Every question that I want to investigate
- Every idea that I have. This is kind of a biggie. This way, I don't lose
stuff.
- When I am in a meeting
- Who said what
- What was said that was interesting and requires a follow up
- TO DO
- When I think about the day/week/month year
- Vigorously use the calendar to plan stuff out
- Think about previous events like this, what I did, how did it go, and how
do I want it to go again

Those are for me big value adds for keeping things together.

The thing is that in that moment, when I am exhausted, I cannot perform as
well, so I can sort of off-load it to when I do feel better.

I also chose two text-to-speech voices that I really like. Cepstral, Callie
and David: http://www.cepstral.com/en/demos . I get exhausted reading large
passages of text, so, I listen to them instead. I can still read, and do, and
using text-to-speech gives me a little "break at the desk" so when I do have to
do fine-grained reading, I have more energy to do it.


#8

Hi. I was hit with Adem in April 2015? Going to out patient rehab now and seem in Oct 2015 I was scoring 9 out of 10 in short term memory functions and in Jan 2016 I seem to have dropped to 6 and 7 out of 10. I believe it’s called the burns test. We have to keep at it!!!


#9

Very interesting and maybe kinda remarkable for ADEM patiënts? I also started writing things down since I was diagnosed. And I still do! Maybe not as detailed and extensive as you do but it's very remarkable that I started this since my contact with ADEM. These are the things I write down: to do lists, some thoughs, questions, ideas, letters to close friends, ...

I also started to write a lot more down for my work. So I can look everything up, instead of having troubles remembering it. It takes a lot of time but it's worth it later on.

I realized that I'm writing down more and more if I compare it with previous years.

I think...some day... I'll maybe end up like you! :D

Anyway, I think it's something really nice, relaxing, interesting, and just very valuable. So I can only suggest to keep on doing it! :)


Occipital said:

Hi Mark2x,

Here are some examples of what I write down:

- When I am by myself, my own private thoughts
- Every time I think that I want to do something (TO DO), at any time,
I immediately take a 10 second or less voice note. That will probably
end up in a calendar or a to-do list. It has to be less than 10s because
otherwise I will get impatient going through the notes. Also there are
often duplicates, so, shorter the better.
- Every question that I want to investigate
- Every idea that I have. This is kind of a biggie. This way, I don't lose
stuff.
- When I am in a meeting
- Who said what
- What was said that was interesting and requires a follow up
- TO DO
- When I think about the day/week/month year
- Vigorously use the calendar to plan stuff out
- Think about previous events like this, what I did, how did it go, and how
do I want it to go again

Those are for me big value adds for keeping things together.

The thing is that in that moment, when I am exhausted, I cannot perform as
well, so I can sort of off-load it to when I do feel better.

I also chose two text-to-speech voices that I really like. Cepstral, Callie
and David: http://www.cepstral.com/en/demos . I get exhausted reading large
passages of text, so, I listen to them instead. I can still read, and do, and
using text-to-speech gives me a little "break at the desk" so when I do have to
do fine-grained reading, I have more energy to do it.


#10

Hi Mr. H! And nice to meet you.

I'm really curious about all the things you said!

So what was this test all about? Like why did you have to do the test or did you do the test yourself?

Did the doctors ask you to do this test? what is this test all about? How did it work?

I'm sorry that I ask you so many questions. Answer only if you feel like it.

Thanks for replying anyway!


M. H said:

Hi. I was hit with Adem in April 2015? Going to out patient rehab now and seem in Oct 2015 I was scoring 9 out of 10 in short term memory functions and in Jan 2016 I seem to have dropped to 6 and 7 out of 10. I believe it's called the burns test. We have to keep at it!!!

#11

I’m finding my hearing to be not as sharp anymore as well


#12

Hi Mark

My situation was similar to yours. I thought I had recovered too, then three years into it I suffered major residuals. One of the worst problems has been hearing loss. Regular audio tests showed normal hearing but after different testing known as audio process testing, it showed my hearing was affected by the ADEM. I had specialized tests done again after that I went for vestibular therapy that helped marginally. Re short term memory I have never recovered. I carry a small memory book and used to carry a small recorder to record things I needed to remember. Hope this helps.

Blosson


#13

Hi mark these are all progressive tests during the final stages of rehab comparing between October and Jan 2015. Today I also am experiencing short term memory issues , hearing seems week as well. Moods are dancing like crazy


#14

Hi Blossom,

How did you say this to your friends & family? I mean.. I don't want to blame my illness for it. But on the other hand, it would be nice that they understood why I'm having troubles with hearing and memory.

I just don't want them to have compassion or that they would feel pity for me. That's not what I'm longing for.

Mark

Blossom said:

Hi Mark

My situation was similar to yours. I thought I had recovered too, then three years into it I suffered major residuals. One of the worst problems has been hearing loss. Regular audio tests showed normal hearing but after different testing known as audio process testing, it showed my hearing was affected by the ADEM. I had specialized tests done again after that I went for vestibular therapy that helped marginally. Re short term memory I have never recovered. I carry a small memory book and used to carry a small recorder to record things I needed to remember. Hope this helps.

Blosson


#15

Hi M,

Are they still evaluating you in relation to your memory (and hearing)? Are they actually following up ex-patients long enough to get real big results in relation to memory and hearing loss? I wish they did some tests with me too...Is there something we can do to slow this process or maybe even block it or something... ??

I think they underestimate this side-effect, and they should maybe take this much more into account.

Mark

M said:

Hi mark these are all progressive tests during the final stages of rehab comparing between October and Jan 2015. Today I also am experiencing short term memory issues , hearing seems week as well. Moods are dancing like crazy

#16

I'm a survivor at 2 years and 4 months. I can do a lot, so much more than at the beginning.

I still get nauseous, dizzy, overwhelmed, upset, memory quits working.

So I can go to work and do really great work, and then that afternoon, I become 100% symptomatic again. Worst case scenario just like it was 2 years and 4 months ago. That would be my worst day. There are better ones. Most days are pretty darn good.

Am I complaining? No.

Am I starting to take into consideration the reality of my situation? Yea, maybe.

It is a big topic on my mind right now because I feel like pushing hard yields good results.

But... I am not getting the results that I want.

There is no user manual unfortunately.


#17

Big agreed..,.


#18

My son last year find ADEM he lost hearing still same .


#19

Hi again I lost all hearing in my right ear three weeks ago. It was sudden. I have had three surgical injections and go for further tests next week. I was told I had: mini stroke. blood clot that destroyed my ear drum or a virus


#20

My baby lost 100% last year but he recover 20% i wish he will get back good hearing power