Acute Disseminated Encephalomyelitis (ADEM) Support Group

Physical rehabilitation from ADEM


#1

Hello.
I’m 32 years old and got ADEM post vaccinations 2 years ago and was wondering whether anyone of you or your family members is suffering from physical disabilities. For me is walking/running/jumping and so on… I’m doing everything on my power and slowly getting better but want to know if someone has a successful rehabilitate story to tell


#2

Hi,

sorry for my english first, I am from Europe. When I got ADEM 7 years ago I had a lot of physical disabilities. I could not fell my body from chest to the feet, so I could not even sit, stand or walk. One of my hands was also very bad in movement. In a few months I completly rehabilitate, so I have no problem with running or doing any kind of sports. I was just pushing myself hard and was detrmined that I will be successefull. Today I have only problems in my vison, becuasue I also lost my vision for about 3 weeks when I got ADEM. Vison returned but consequences stayed.
Just keep doing everything that is in your power and good luck :slight_smile:


#3

Thank you @bazo
At first I was also perelised from neck to bottom, so improvement is great. How long passed from when it started till when you started walking and running?


#4

I was in hospital for 5 weeks. After about 10 days I was able to sit, than I had a lot of physiotherapys, I started riding stationary bike and walk a few steps with a lot of help. After I went home from hospital I was walking with crutches and I was stil in a rehabilitation program for 5 weeks where I had physiotherapys, swimming etc. After that I was able to walk and run. So to completly physicaly rehabilitate it took me about 10 weeks.
Did you have any problems with your vison?


#5

Wow! that’s really fast! I’m 2 years after and still having trouble walking…
However, I do not have problems with my vision, only dry eyes (started since the ADEM)


#6

Naama, welcome to our support community. I’m happy to see that you have had some responses to your post. There are many other people out there, though, who may have wisdom to share. A couple of suggestions:

  1. Use the “magnifying glass” to the right in the green band to search for keywords related to your topic. Through a search like that, you may be able to find members with experiences to share. At the bottom of this thread, you will see an icon that says “Invite”. Click on that, and invite some of those people from the old thread to respond here.

  2. Go to the threads related to your keywords and ask your question on the thread: everyone from “back then” will get a notification about your responding to the thread. Never know what will come up.

Between reviving some old threads and inviting people to your current thread, you should get a fair amount of response. Give it a try: it should be interesting.

Seenie


#7

Hi Naama,

My brother was 29 when he got ADEM. He’s a year into his recovery and still can’t talk or use his body. He is now able to hold his head up, move his one arm, cry, smile, and laugh. His comprehension, memory and awareness seem fully intact. Your situation sounds like it was very similar to his. I’m curious, how has your recovery progressed from your earlier post?


#8

Hi Naama,

I was diagnosed with ADEM three years ago while I was a senior college student and thankfully went through a rather rapid recovery. I was initially prescribed a medical induced coma for over a week, had a total of 2 seizure episodes, and was hospitalized for a total of 5 months before transitioning into 2 months of comprehensive therapies through a home-based rehab program after discharge where therapists visit daily to work with me for several hours at my house. I officially returned to school in less than a year to finish my degree. I’m incredibly grateful to have finally stopped taking Keppra beginning of last month and will soon start nursing school in January. Please do not hesitate to contact me if you have any questions at all! Sending you warm wishes this Holiday Season and hope you have a wonderful Thanksgiving! :slight_smile: