Acute Disseminated Encephalomyelitis (ADEM) Support Group

Coping with ADEM after being discharged from the hospital


This is where you need to reach out to family and trusted friends and send them YouTube links about recovery so they understand what is happening and they can help.

How it feels is that you can’t remember to pay attention to time. It isn’t about caring or not, you just can’t. Even if you get reminded constantly you just can’t keep track of time. But it gets better.

That is great news!

The fatigue takes a lot of energy. The fatigue affects everything. Also neuroplasticity: the brain has to rebuilds its information highway. So, it is a constant work in process.

It is good to have goals! They will take time. That has to be so hard to be in this situation, reach out to this group for support because they understand.

Everybody is very different. Everybody is good and one thing and less good at another. In recovery though, it can be slow. During the first years the best thing to do is to focus on recovery. Do puzzles. Play music. Meditate. Eat a low inflammation diet. Exercise. Search the internet for brain injury recovery tools: they will help your husband and help you feel more in control and have a better sense of what recovery can look like.

Keep at it Nidhi. Things will get better.