Acute Disseminated Encephalomyelitis (ADEM) Support Group

Emotion

Hi guys.

Quick question… I learnt to walk/ talk/swallow quite quickly but my cognitive side stil needs a bit of work. The last thing I need to battle is my emotional side, I’m trying to deal with it but I end up crying a lot and struggling to deal with my emotions now, thinking why am I not back to how I was before all this and If I can’t do a. Whole two days of things I used to do I get very upset. Has anyone else been through this stage?

Thank you Britany. I know I should be proud that I have come so far in such a short time but the emotional side really gets to me that I can’t do things at the moment that I used to do, I know it takes time but patience with far is very hard to deal with.im trying to be strong but in some wash I think I’ve been strong for so long.

I know I should be proud that I managed to walk/talk and swallow again but I think like you the fact I can’t remember it doesn’t really help as it doesn’t feel like it happened to me. Your doing really well as it only Happened in aug. Mine happened in May and I didn’t come out of hospital until aug.

Oh no two! How awful.
You have done so well to overcome this. I do have people to talk to around me but I feel talking to people that have been through it helps more as they understand how hard it can be to have to relearn everything again and again. That’s something that tires me out, having to learn everything again. I didn’t even remember how to brush my hair or my teeth so had to be taught how to do that again which I don’t remember, my best friend told me that she gVe me my toothbrush and I just looked at her saying what’s this. It hurts to hear all of that but in some ways brings back my confidence slightly showing how bad I was to what I’m like now. How are you coping now?

I got told ADEM can only occur once, how come you got it twice? I got taken off Facebook and everything cos my spelling and grammar was terrible when I started to come round lol

Aw bless you, you have had a lot to deal with. Yes they did tell me possible MS but more than likely ADEM, no one has ever heard of it including me. How is your walking and talking? I guess you have you bad fags and good days like me. No one really understands that you can have good days and bad like anyone else really, they think your going backwards if you have a bad day but I just say it’s just a bad day and tomorrow will be different.

Haha I did see the posts that I wrote on Facebook lol an texts I sent people, can’t believe some people actually could read what I said lol. I had to re read them haha. When mum said think we need to take you off Facebook for the time being I didn’t have the energy to fight it, I just came off it which was probably a good thing.

Each day is a battle but as each day passes it does seem to get better with the support I have. I broke
Up with my boyfriend whilst in hospital , long story, my decision but that hasn’t made it any
Easier to deal with. I used to go away on holiday every year, I am a bit of a travel bug and it upsets me I didn’t get to do it last year cos of this and what I had planned this year will be on hold cos I don’t want to go alone, that’s part of the ADEM- loss of confidence

The cognitive challenges are still the hardest for me. I had my ADEM 2 years and 3 months ago. I find myself asking my wife " could I do this fairly easy before the ADEM. My ADEM was caused by Enbril the arthritis medication. My Memory took it the hardest as I have very few memories completely in tack. Spelling is also very hard for me now too. Even though I have a B.S. and M.S degree in Economics I remember very little of it. Ever year now I take a complete battery of cognitive tests. Very few people can fully understand what we have and are going through. Watching my IQ go from 147 to 94 in a three week period was hard for me to understand and adjust to. I wish you the best,

Barry ( Bchap)

The emotional is by far the challenge that has the longest reaching effects for Greta. Not all of her lesions disappeared with steroid treatment. They shrank, but some are still there. So, there's still messed up connectors in her brain. This will now be a part of her life - always. Learning how to cope is a huge challenge. It's a lot to throw on a little girl who is also, thanks to steroids??? - started her cycles a good year and a half earlier than the usual. Trying to explain things three or four times so her short attention span can get it, while not making it out to be really bad (she always asks am I going to die whenever she gets sick) so she knows she's okay and this is normal.

The neighbor girl who is her best friend has told Greta once that she wishes she could go back to before ADEM. This crushed our daughter because of course she wishes that too, but it's not reality. It's been 2 1/2 years since diagnosis and treatment and you would think we would have a better handle on this by now - and maybe we do - by simply recognizing that it is now a part of life and we will keep going and improving and finding ways for Greta to cope and surround herself with people that can help her cope.

Hi Vicky,

My neurologist explained that emotions are definitely a part of this process for some of us. I tend to react strongly to happiness or stress by uncontrollable laughter or tears. That part has been a challenge, and it may or may not heal. I am much like you that most of my physical challenges healed up quickly, but if I overdo it (which I usually do - trying to get back to "normal"), then my body fatigue sidelines me.

Emotions are a real challenge for me as is the fact that I seem to have lost some of my vocal filters, meaning, I say exactly what I'm thinking when I'm thinking it. I curse like crazy when upset and I have no verbal diplomacy working right now.

Hoping and praying for all of us to see recovery. I will be starting with a homeopath soon, and I will keep you posted on the progress.

Hang in there. LauraK

My physical side came back quite quickly so I don’t really have problems with walking and talking but can slow down if I’m tired but like you Laura I overdo it all the time and then get upset afterwards but I also say what I’m thinking all the time which is not good.

Greatas mum- that’s a good thing her periods came tho, mine stopped. I think as I went down to 5at

Stone my cycle stopped and still hasn’t come back, my neuroglogist said hopefully after a year it will come back and it’s coming up to a year so fingers crossed.

Barry I know what you mean, the congnitive side is a huge impact on me, I get impatient that I have to think About things more than I used too especially at work but something I guess I have to get used too.

Hi Everyone,

I am a newbie here and I am still trying to learn about ADEM. Currently, I am seeing the 6th Neurologist in 5 years. I am dealing with weakness on one side, mostly in my calf area and my shoulder. I have no idea if I have ADEM for certain as the diagnosis is still in progress. Is this what everyone else has gone through? Kind of a mystery disease?

Thanks,

Sophie

Wow. This has been the most helpful discussion I have seen so far. My husband does not have the emotional ups and downs that you are all describing , but his neurologist put him on Zoloft right from the start. He just gets so fatigued really easily, and he feels like he has medicine head all the time. It is a struggle to focus. Part of me has just thought that he can't get past what has happened and that he needs to work past it. I get frustrated because he always seems to ask me what I was doing or where I went when I told him specifically before I did it. Now I am seeing that you all seem to have the same issues. We did try tapering him off the Zoloft recently, hoping it would make him less fuzzy headed, but about 4 days after getting to the point where he could stop it completely he broke down and started sobbing from the frustration of it all. He went back on the Zoloft next day. We have been trying the high fat/no gluten/no carbs and sugar(not easy there) eating discipline and I believe it has helped some. We are reading the book "Grain Brain". Some of it may make sense to some of you. Thank you all for being so open in this discussion, it makes me feel like I can be better understanding now.

Hi Sweetie Pie,

I know this sounds ridiculous to say, but you both need to give your husband a break. He has had a life-altering illness that (if like me) has left some damage to the brain. I don't know if it will heal or not, but the sooner you both accept his current limitations, the better. I sought counseling, and that has helped. My husband and I joke that this is the "new normal." It may not be forever, but it's what we've got to work with now. I have avoided meds for depression by choice, but there are nights especially when I've overdone it that I have to take Valium or I cry uncontrollably - whether sad or not.

It is scary when you're used to just doing things, but it may not be possible right now. This "wisdom" comes after a year of beating myself up.

Be patient and love each other.

LauraK

Sophie it doesn’t sound like ADEM but a form of MS. What does your neurologists say? Anyone else have any info for Sophie?

I agree with Laura sweetiepie, our emotions are up and down and when your used to doing things and then it gets taken away and you struggle and get frustrated that you can no longer do what you were used to doing. However there is a plus side, your emotions are one of the last things to come back so he is doing extremely well if that’s come back, if you look at it this way you are starting from birth again, learning to walk, talk, eat again and then you go go the adolescent stage of emotions and frustration.

For a lot of us, it is about choosing our quality of life. This is what makes it so terrifying for me as a mother. Right now I'm doing the best I can by Greta. My husband and I are constantly discussing, asking questions and seeking out more options. We are open to hearing suggestions and have been blessed by trying different things for Greta. My greatest fear, as an ADEM parent, is that I will have chosen wrong for her. Guided her wrong in the process. It's a heavy responsibility I take very seriously.

For those who are older and able to decide for themselves what kind of treatment they want and what kind of quality of life they are looking for, I'm sure you go through the same things, listening, observing, asking questions and being willing to try other options. In the end, no one knows your body like you do. In this case, no one knows your husband better than he does himself. Not even the doctors. He's got to choose for himself how to deal with this and it's probably no easier for him than any others. It is a bit of a mystery disease and if it's impact were predictable and consistent across the board for its victims, we'd probably have better answers - but we all know that ADEM has such a wide range of ways it impacts each patient due to so many variables and factors. We all have to do the best we can. Hang in there.

I know about the misery of medicine head personally. I've seen Greta's inability to cope emotionally at times and since her neuro hasn't seen fit to go the route of meds yet and we keep trying other things that help her, we believe that meds aren't the best route for a vivacious 11 year old girl. But that's not the right choice for others. It all hits us differently. Hang in there.

sweetie pie said:

Wow. This has been the most helpful discussion I have seen so far. My husband does not have the emotional ups and downs that you are all describing , but his neurologist put him on Zoloft right from the start. He just gets so fatigued really easily, and he feels like he has medicine head all the time. It is a struggle to focus. Part of me has just thought that he can't get past what has happened and that he needs to work past it. I get frustrated because he always seems to ask me what I was doing or where I went when I told him specifically before I did it. Now I am seeing that you all seem to have the same issues. We did try tapering him off the Zoloft recently, hoping it would make him less fuzzy headed, but about 4 days after getting to the point where he could stop it completely he broke down and started sobbing from the frustration of it all. He went back on the Zoloft next day. We have been trying the high fat/no gluten/no carbs and sugar(not easy there) eating discipline and I believe it has helped some. We are reading the book "Grain Brain". Some of it may make sense to some of you. Thank you all for being so open in this discussion, it makes me feel like I can be better understanding now.

Thank you Laura and Vicky. You are both right. We have been dealing w/ this new life for a year and half now. The most of the year has just been concentrating on getting him better and not just living. We were counting on him getting so much better than he has gotten after a year as that is what the neurologist led us to believe. It was a huge blow to both of us when he said that Mario has brain damage and that this may be as good as it gets, when all this time he especially was believing that it would mostly go away. We have a very close knit family that loves him and his grandchildren are all so cute because they are very protective of him and they will come to his aid w/out being asked. We will continue to try to find ways to make him better and get the most out of his health. It helps to know that what he is experiencing seems to be "normal".