Let's Talk

@trust_level_0 to our older members and newer members, who have or are currently experiencing the trials and tribulations of ADEM, can you please share some of your experiences or thoughts with our newer members…they can benefit from our experiences. It may also help us reunite with people we haven’t spoken to in quite a while. I have yet to meet a member that I wished to avoid. I’m curious to know how each one if you are doing, before and after Covid I wish you all the very best!!!

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I’m not a member here (ModSupport Staff) but thought I’d share our "covid experience of the last year that all came to a head today with yet another adoption photo for a our wall… We all look like a bunch of robbers. Definitley stands out from the others:adoption

Coraline: Age 9 Penelope: Age 7 New parents: age 68 Judge: Age 74

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There are so many children on this earth that need a loving family. Thank you Tom and your family for opening up your hearts and home to these lucky lucky girls! I’m sure you and your wife feel lucky, too. We definitely could all use some bright light these days. :heart:

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Hi! Where to start, I was diagnosed with ADEM two years ago at the age of 30. I had just celebrated my birthday when I two days later came down with the flu and then four days later was paralyzed from my chest down and had brainfog. Turned out to be ADEM with lessions at the brain stem, hippocampus a place in the brain that controls dizziness, and my spinalcord was full of them. My paralyzes became better from my chest down to my bellybutton in the first months, and my lessions in my brain heald in about five weeks after diagnosis even if my memory is still a bit off and not what it used to be. My left leg is almost back to normal function but my strength isn’t quite there yet, and my right leg is weak and I only have some control over it. I was well on my way to walk again but 1,5 year in to my recovery i got a backlash. I got a new micro inflammation in my spinalcord that made me lose strength in my right side, both leg and arm. It wasn’t predominant in my right arm because it was functioning normal. I also felt extremely tired. But now 7month after my backlash I’m on my way on getting better again. I’m working out three times a week, two days at the gym and one at physiotherapy. I’m determined to one day walk again and not to be confined to a wheelchair :slight_smile: life for me after my diagnosis has had its ups and downs. I’ve settled in quite well to a life in a wheelchair and living independently. It has become the new normal, even if the disease has brough with it some nervpain and backpain. Life still runs its course and I’m just happy to be alive and a part of it :slight_smile:
Sorry for my English, I’m from Sweden

Your English is great! Thanks for responding. Do you have a way of keeping your spirits up? I feel lucky that even though I’ve recovered, not exactly as I was, but there is a lot that I can still do. I get frustrated, when things don’t work like they used to, but then I think, it could all be much worse. I have a great husband and a giant dog who makes me laugh all the time.

Hi im 50 was diagnosed with adem nearly 3 years ago. Was put in an induced coma for 4 weeks on ventilater for 7wks and about 1yr in hospital in total. I was told i should be on my feet 2 years but ive had setbacks with having double pneumonia couple times and no physio. In the end we went private physio who i have 3 times a week im getting stronger my core is and legs are but they fatigue very quickly dont know why. So frustrating if never had setbacks i could be standing. It gets me down so much just want my life back. I need to lose weight but find it difficult to as cant move that much. My lesions have gone from my brain and spine so its just a time thing. Any more information to help gain strength would be grateful thank you Karen

I was 55 when I was diagnosed. I think age hinders our healing a little. I found that good nutrition and exercising helped me. Are you able to walk at all right now?

Hi no not yet but going for a trial on monday 16th April for baclofen pump to see if it stops the spasms as they could ne preventing me from getting on further.

My husband was diagnosed back in 2019 of March with ADEM. He is up until now confined to a bed and has been in the hospital for 2 years. They did all what can they medically do but still no physical recovery. I wanted to bring him to Johns Hopkins and find specialist that can treat him better. He is in a long term care facility and in a vent and has not come home. Covid contributed much to our loneliness and the isolation deteriorated him during those months. OT did not visit him those covid months and he lost a lot of muscle movement and strength. We pretty much do facetime 24-7 after the second lockdown. Leaving his cellphone at his room and talking to him via facetime is our normal. And I am free to call him everyday, anytime of the day. It is now again he regains his spirit as I can visit and take care of him on weekends. I am praying to God that he will reach what you guys are in now. Having to move, Out of the bed and can roam around even on a wheelchair and taste food. He wants to scratch his nose when it itches, he longs to talk, do mundane things; as typing your experiences here. I wanted the hospital to allow me to do muscle therapy on him, those you can attach to the leg and arms to build the muscles again. Sadly the hospital he is right now do not allow it. The hospital does minor range motion but it is not enough. I do believe Seattle does not have much facility that deals with this disease. Theraphy nor studies that will help such patients to recover. Right now muscle spasm is painful for him, yawning and coughing does not help. although he takes muscle relaxant too. He is now again weaning from the vent but gets tired. Slow baby steps after covid. Regaining again the movement he lost during lockdown. I pray for both your love ones and you coping with this disease to stay strong and draw strength from each other and from God. Faith is what keeps me and him going and facing this battle head one. I believe Covid made us both realize that we need God and each other more than ever.

I am soooo sorry you are both going through all this ADEM stuff. It can be hard enough wading through healing, but add Covid to the situation and your situation simply becomes harder. My aunt and father both died in nursing home due to Covid. My mother did not sit with my father until the day he was dying. They went 6 months without seeing each other due to Covid,

How did your husband develop ADEM? Any time you have questions, want to talk or simply vent, we are here for you! Remember you must take care of yourself as well. You are needed.


He had a fever the night before. He brushed it off being a man and all. But he was complaining a week before of being tired all the time. I went to work the next day and found him on the floor grasping for air that night. He was laying on the floor for more than 5 hours. He said his legs felt weak and could not even call me. I got anxious when he was not responding to my calls. When I found him, I called 911 and the hospital doctor got mad as they told me that I brought him in that state of being critical already. They put him on the vent immediately but went to comatose after making him sleep to put the Orotracheal intubation. They did brain scans and found multiple white lesions on both of his brain and took sample of his spinal fluid. The doctors told me that the priority is to wake him up first as the hospital brought 5 different doctors to wake him up from 2 weeks of comma. They did plasma exchange, steroids etc. And finally told me that he had ADEM. He woke up very slowly as we started to communicate on his first week of waking up from comma by blinking his eyes to yes and multiple blinks to no. Eventually he gets to move his mouth by yawning and eventually smiled. He regained his memory and can respond to pain and questions. But no movement still. He gets muscle spasm when he yawns and coughs. We are trying to recover those things he lost. It takes time, patience, understanding and a lot of Love.

I appreciate your kind gesture to vent. I do get upset from time to time when his needs are not being met and if I encounter a rude hospital personnel that does not show any compassion to a patient that is bed bound and helpless.

I pray for them that takes care of people like my husband for more understanding and treat them as they would if they were family or themselves in that position. And I pray for myself too for longer patience and get rid of my anger as quickly when I see my husband smile. Taking care of him right now and telling him how much I love him each day is so powerful for him that it pushes him to fight and live.

Hi, I haven’t been in here for quite some time. My husband was diagnosed with ADEM in 2013. He never really got especially better as every doctor said he would. Come 2017, I take him to hospital because something isn’t right and he proceeds to go into a very low state of consciousness for two days. Then he just wakes up, knows me and doesn’t know what happened but has difficulty knowing the year and where he is at. Three weeks of hospitalization where he goes from neuro floor to rehab floor, to an acute illness floor due to pneumonia, then off to a nursing facility for rehab for two months.
After all this the docs start calling it MS and recommend Ocrevus infusions. The neurologist still not very clear in his diagnosis saying if there is a room full I’d neurologists half would say it’s ADEM and other half MS. Needless to say I have had a lot to deal with in caring for him and he is declining. Doesn’t walk, talking so low I can barely hear him, and myriad of other things.
I guess my question is this: Is there anybody else experiencing all this? He has no quality of life, I have no quality of life, and talk about COVID19, I quit my job for ten months and it was awful. We have been vaccinated now and he did well with it but I am still hesitant to take him anywhere. I noticed there doesn’t seem to be an MS group anymore. I just need to know if this is happening to anybody else.

Seenie here from ModSupport. I’ve just come across this wonderful thread that Moderator @Lynn launched back in the spring. Let’s hear it for Lynn! :clap: :clap: :clap:

Let’s have a thread revival! How is everyone doing now? If you use the reply button, everyone on the thread will be notified of your response.

Why not drop in to say “hi”?