I've got measured (15g of finely cut tea) consumed until 4pm. That is an easy way to get some extra neurotransmitters!
Hi guys. Today I broke another phone, the second this year (at work).
Going home after work I call it return to Abu Ghraib after the infamous torture "facility" in Iraq.... If I am lucky we adults dont talk, just me and the child and things go very well. As Occipital correctly said a brain injury acts as an amplifier. A high end one.... Oh yes, I just had my 5th espresso, (freshly grinded pure arabica), since 6am this morning and I am nicely tuned
Anyway it is beach day tomorrow, something to look forward to for as long as only the child talks!!!!
Oh guys, shame so sorry. You are all such stars going through so much and trying to stay positive! Neurologist had nothing new to report, more changes on meds, and back in 1 month. She says she is certain its ADEM still not MS. We waiting for approval on IVI treatment, not sure yet if we will try it though. Brian had a very bad weekend. Went 10 pin bowling, he his such a wobble. My youngest son eventually played for him. Yesterday he was finished - it was a Sunday luckily, he slept 4 hours straight from 12:00 and then back in bed at 8pm. He could hardly walk up the stairs, had to hold on to the railing. Very worrying. I dont know how you all cope. 10 out of 10 to you all. Thanks again for all the feedback xxx
Cheers
Belinda
Belinda, 2013 was a nightmare year with a flair up a few months after the initial attack. The year went very bad, then 2014 was a hard year, things started to shape up towards mid 2015 but still soooome way to go..... It s gonna take a while till the nerves find a way to reroute and skip the damaged area.Bowling isnt by any means the best thing to do: My finger tips are still numb and weak so trying to play is a catastrophe as I keep dropping the balls and this makes me very angry!!!
Rest is a must. I always catch a mid day nap between 3 and 4.30 pm before an angry wife calls to ask where dropped....Some times I oversleep till 6 and can not hear the phone. And then between 7.30-8pm I have to be back in the office. But no matter what dizziness is the best partner that doesnt want to go.
ADEM is hell on earth it seems! :-( Sorry for all you go through.
Maybe you have to miss something so that you can appreciate what you had.... My wife's approach is completelty different, based on indifference. This has made me very hard, cold and unemotional but also very strong in terms of the disease. I only talk to my next of kin about it but dont want to make them feel bad so it is always good news for them. I see every new day's small improvements as something to feel good about. If you raise the issue why me or why us? It just happened, no use to cry over spilled milk. At least we can walk and see whereas others can not. Be positive!
Thanks, and I am so sorry for your hardships! I'm not even asking why us? I asked all those questions when my youngest son ran in to all his medical complications. There are no answers... Its just crazy that a disease pops up and can totally destoy people's lives and marriages whereas before everything was just going along great. Brian wont talk to me about his feelings - he never did in the past, or where he is at, but I do manage to get out of him if it has been a good or bad "ADEM" day. So its positive and recently he has been asking for feedback from this site. Which is also a good sign. But he wont read anything from here that I print. He just wants to know the bad stuff. As you say, we must be positive so I try tell him the good feedback, and then also tell him how lucky he is compared to some, which is not fair I know, but when your partner starts talking about seeing the pearly gates you really get worried and try come up with ways for them to hold on to hope!
papageo said:
Maybe you have to miss something so that you can appreciate what you had.... My wife's approach is completelty different, based on indifference. This has made me very hard, cold and unemotional but also very strong in terms of the disease. I only talk to my next of kin about it but dont want to make them feel bad so it is always good news for them. I see every new day's small improvements as something to feel good about. If you raise the issue why me or why us? It just happened, no use to cry over spilled milk. At least we can walk and see whereas others can not. Be positive!
The doctors put me in physical therapy where they did balance "work" to improve my balance and dizzyness. I did NOT find it helpful. I still (2 1/2 years later) struggle with balance, dizzyness and clutziness. I'll be watching your post to see if others have thoughts.
Best of luck to you both,
LauraK
I find that stress/anxiety makes the balance issues... an issue. When I feel good my balance is fine. How about you?
LauraK said:
The doctors put me in physical therapy where they did balance "work" to improve my balance and dizzyness. I did NOT find it helpful. I still (2 1/2 years later) struggle with balance, dizzyness and clutziness. I'll be watching your post to see if others have thoughts.
Best of luck to you both,
LauraK
Close to 3 years and dizziness persists. The mood plays an important role. When relaxed and not stressed things are better. When loaded things arent any good.
Night is the best part of the day, when I get decongested and feel better
Shame laura, yes Brian also went through some therapy work through a Vastibular clinic I think... They said he is quite off balance. Also did not help. The dizziness is so bad some days. Maybe it is stress that makes it worse, I can see how it would... Its a vicious circle though, you get dizzy, so you stress, and then get more dizzy etc. Well thats what seems to happen.
Occipital, When he is feeling better, there is most certainly an improvement in his balance. You seem to have hit the nail on the head. Sorry, bad pun I know :-(
Papageo, how does being decongested at night help? Confused? Enlighten please! :-)
I am 3 years post ADEM. My ADEM was caused by the medication Enbril. At first everyone told me I had MS even after 2 spinal taps. Finally I got to see Dr.Nancy Sicotte at Ceadars. She had written a paper about TNF inhibitors like Enbril and this rare reaction. My IQ that was tested on line in 2005 was 142. three months after the ADEM I was 92. a year after the event I was 96 and the last test I took 8 months ago I was 98. I have had to relearn a lot of stuff. starting a year and a half after the ADEM, I would start getting dizzy a lot. Meclizine helps some. I found also that hanging upside down makes it go away for a while.
Best of luck to all of you,
Barry
Awesome Barry, thanks for sharing this. Best of luck to you as well
Cheers
Belinda
With decongested I mean more at ease. It is normal at the end of the day, having accomplished "my mission"
At this point, we need all the jokes that we can get, and that includes bad puns, so, please keep them coming lol.
For me the dizziness can turn into a loop with anxiety. I get upset so I get anxious, and that gets me dizzy, and so on and so on. I meditate a lot to try to calm down and notice what is happening so I can try to stop it before it gets out of control.
BelS said:
Shame laura, yes Brian also went through some therapy work through a Vastibular clinic I think... They said he is quite off balance. Also did not help. The dizziness is so bad some days. Maybe it is stress that makes it worse, I can see how it would... Its a vicious circle though, you get dizzy, so you stress, and then get more dizzy etc. Well thats what seems to happen.
Occipital, When he is feeling better, there is most certainly an improvement in his balance. You seem to have hit the nail on the head. Sorry, bad pun I know :-(
Papageo, how does being decongested at night help? Confused? Enlighten please! :-)
Hi, I am Dooglass (Douglas!) married (now) 56 years to Ingrid who suffered an ADEM brain inflammation in August 2014.It followed a gastro attack which put her in hospital here into Adelaide South Australia. She was in a coma for five days and then the doctors diagnosed ADEM. After a further three days of injections and tests she slowly recovered and, within three weeks she was transferred to rehab at another hospital. Six weeks later she came home.
Now we come to the point of this presentation. She suffered slight voice slurring but the major problem, which continues to this day, is her imbalance, She cannot walk without a stick and often stumbles.
My research, supported by the neurologist, indicates that she has probably ataxia of the cerebellum. This is the area of the brain responsible for balance (at the top of the spine) Ataxia describes a loss of balance Myelitis describes the stripping of the âinsulationâ covering connections between parts of the brain, effectively block signal that give you balance normally⌠That is the ADEM effect on Ingrid.
Over the past three years we have tried just about everything. The neurologist says that,eventually, she may regain full balance. But Ingrid is now 80 so that is not really a good message! What gave some improvement was neurological physiotherapy. These are special exercises that improve brain/muscle interaction. I am sorry I cannot give you more hope but, bearing in mind that I got Ingrid back behind the wheel of her car after two months and she returned to teaching at the U3A after 3 months, she has made great progress.
I pray that Brian makes a full recovery and, eventually, by whatever treatment, regains his balance so that you can once again live a ânormalâ life
Best regardsa
Dooglass
Hi Dooglass, than you so much for sharing yourâs and Ingridâs story. Itâs a really scary disease 
Brian has regained most of his balance and is working full time. But when he gets home in the evenings he is exhausted and on weekends when he is not working we hardly see him. He has an armchair upstairs in our room which has lovely views of our local beach down the road. This chair and the view is his salvation in a way. He still experience some stiffness I his neck and head, and is still extremely sensitive to the weather, wind, and extreme temperatures are a problem. The biggest issue now for him is the past year he gets these hectic electric shocks that shoot through his lower buttocks and legs. It is so painful that he screams out at night, and if he is home and we have no visitors, otherwise he holds in the pain but you can see it in his face and how his body jerks. My boys on average get to bed around 10pm at night, and keep in mind the one is 11 and the other 14 yrs. So this is no good for their performance at school but somehow they keep going. Its become the new norm for us to live on 4 to 6 hrs sleep. Only once he falls in to a stupor type of sleep, can we get any. Most often he sleeps in the chair these days. Despite that it must give him one hell of a neck ache, he seems most comfortable in a sitting position then even lying down. They have tried 2 lots of chemo - rituximab infusions, Feb 2016 and March 2017. The head and neck seem better, but the lower body seems worse
He also sometimes has âwetâ accidents at night in the bed or chair, and I have found him collapsed on the floor a few times when his legs just give in. These times normally were preceded by a bout of drinking when he has just had enough of life in general. Those nights are the worse, as then he screams and rants and raves about God forsaking him. I cannot stop him, and he wont seek professional help. He is seriously depressed, and I donât know how to help him anymore. This disease has destroyed my family in so many ways. We have not just lost a father and husband, we have lost our lives as we know it. My heart breaks for him and my boys. I just keep praying for an answer or hope from somewhere. The Neurologist cannot give us any prognosis on his future. And sadly SA donât have any decent teaching facilities where there are Drâs who are looking for cases like this to work on. I see America has a lot of these. Not sure about you guys in Australia? He lives on Lyrica and Baclofen to get through the day, and when we can afford it we buy Cannabis Oil and he drops a little on his tongue to just take the edge off. Its still illegal here in SA, even for medicinal use. We have a local supplier though who has so many cancer patients. Just so sad they cannot legalise this drug. It would help so many people!
I still wonder if my husband has not been incorrectly diagnosed, however every time they do a lumbarpunch it comes back negative for MS. The Neuro says ADEM, the Prof says NMO. We have tried both treatments and 3,5 years later we are still no more the wiser than when he was first diagnosed.
Sorry my feedback is rather bleak. I am hopeful Ingridâs situation is improving by the day. I pray for all of us going through this hectic path in our lives. Thanks again for writing, really means a lot to not feel so alone!
Best wishes to you both!
Cheers
Belinda
From Sunny SA! :-)
Dear Belinda,
Thank you so much for your reply. I appreciate it all the more because of the continuing difficulties you are having.
I feel incredibly lucky that we live in a country where there are medical folk who recognised and rapidly treated ADEM for what it was and ensured Ingridâs early recovery.
There are some after effects that are now appearing. Slight changes in character and behaviour are now becoming apparent ( especially after 56 years of marriage!) but they are minor compared to the nightmare you and the children are going through
I wish there was a magic cure that one could find but reality dictates that a radical change for the better is unlikely. Your husband is defenceless in the face of this awful disease and is reacting as one does, I guess, faced with a very negative future. Are there no support groups in your part of SA who could take some of the burden off you? You are correct in wishing cannabis oil was legal in SA. Here, in the other SA (South Australia) it is legal now and has been a real boon to many sufferers.
Please continue writing if it helps you get through another bleak day. We wish we could offer you more than friendship and support but they too, are a measure of the affinity we feel with and for you
God Bless
Doug
2 Likes