Acute Disseminated Encephalomyelitis (ADEM) Support Group

They could use encouragement


#1

Good evening everyone,
I’m sure we can all remember the moment we were diagnosed with ADEM. After my diagnosis, I was lost, until I found our site. I found a lifeline! To all of us who have improved since our diagnosis; if you feel that your path could be encouraging to our new members, please feel free to briefly share your story. Do you remember how scary your ADEM diagnosis was…well ADEM continues to attack new patients. Let’s try and give them a lifeline.
Thanks, Lynn


#2

Good evening Lynn. When I was diagnosed I was so out of it that it didn’t scare me. Looking into the faces of my family and then friends; I could see that things weren’t good. Still though, I could simply “not mind” because of being out of it. Only now just about three years later it is starting to hit me. This was a big deal. This was scary. This delayed reaction is vexing. Glad for all recovery, upset that I missed out how bad it was. Then again, maybe it is good not to know; we have enough to worry about as it is.


#3

Hi Occipital
My husband(aged 40) is too hit by this dreadly disease. He is not able to speak at all and is on tube feed and catheter. Though he is able to move his limbs he cannot stand without support.He is admitted to hospital since past 50 days and showing little improvement in response. what was your condition at the time of diagnosis ? how long it take for you to recover. He got 5 days IVIG treatment and heavy dose of steroids initially which are tapered to 8 mg now.Doctor said he doesn’t need plasmaphoresis .
As he is becoming more alert now he is gets aggressive if we force him to speak because he is trying hard.
Please tell me were you able to speak after the attack ?
Thanks
Nidhi


#4

Hi Nidhi. You are going through a lot right now. Now is the time to get as much support from trusted friends and family.

I was able to speak. My medical event had a lot of things go right. What is the same for all of us survivors though is that it takes a long time to recover. The aggressive frustrated behavior is because your husband has his checks and balances reduced because of the brain injury. Also it is insanely frustrating trying to think/act/speak/do when your brain will not let you. Be sure to read up on brain injuries and join a brain injury support group, either for survivors, or caregivers because it is truly hard and nobody outside of you really understands. But other survivors and caregivers understand: you are not alone reach out here because we can get through this together!

Our body and mind are developing new connections so we can get back to what we did before.

Because you are close to it, it will be harder to see the small improvements bit by bit. Also it is hard and scary. Caregivers go through the most pain in the world. They are the toughest people I know.

So know that it takes time. It take a lot of time. In the end he is still him and he will always be him. Know that the brain injury is what is different but he is the same. Just keep at it, it can take a lot of years. I am 5 years in and I am still recovering. The Internet says on average it takes about 10 years. Also your husband is still young, so he will recover faster. Just give it time and give yourself some TLC to help you make it through this recovery, too.