Acute Disseminated Encephalomyelitis (ADEM) Support Group

My wife Ingrid is aged 77 and suffered an ADEM attack at the end of 2014. She is now in rehab. I wish to discuss with other mature ADEM sufferers or carers the issues facing these patients and ways of

Ingrid's main problems are: imbalance, a semi-drunken gait and a "lead head" to use her description and; food allergies that have appeared six months or so after her recovery began. Formerly she was tolerant to gluten and lactose. These now cause a severe reaction in her abilities to walk and concentrate. There are also periods of severe short-term memory loss, lasting a day or so.

Anyone out there with similar reactions or symptoms?

Not sure if I can be of any help but my son was diagnosed with ADEM in April 2015. He is 31 years and had a very severe attack. He was hospitalized for around 6 months and had one biopsy done on the brain and a surgery for a brain herniation because of complications from the biopsy. He was given Steroids, 7 rounds of plasma exchange and 4 rounds of Chemotherapy. He is currently at a cognitive rehabilitation center. He just recently started reading and does simple maths but with a very short concentration span. When he laughs profusely he loses his balance and falls. The neurologist is expecting a full recovery by November 2016. Progress is slow but there is progress. His long term memory is better than his short term memory. He never remembers where he has left anything. We always have to help him to find things. It is sad that she has trouble walking from watching various documentaries and reading walking is very good for brain healing. Healing does occur but it is a long and slow process. He does appear bloated from time to time but we are not sure if it is because of the brain injury or because of the medication he is currently on. Praying that your mom gets well. This is the hardest and longest journey. All the best to you.

Dooglass, my name is Lynn. I was diagnosed in May 2013. My case may not have been as bad as your wife, but we all seem to have some things in common. I was 55 at the time. I developed ADEM after a neurovirus. I had pins and needle and numbness in 3/4 of my body and loss function of my hands. Long story short I was in hospital for 4 1/2 days of steroid IV. That started the healing, but I had to learn how to use my hands all over again. Almost 3 years later, I’m doing well. It has left me some residuals in my hands and a few personality issues. Nothing totally upsetting. I’m more emotional, can’t handle as many things at one time, I see more in black and white than gray. And sometimes I lose my words mid sentence. BUT, compared to 5/2013, I’m doing just fine. We all have different symptoms and are left with residuals. Most of us end up functioning fine. Healing is a slow process and can be stressful. Take one day at a time and celebrate each and every improvement. Any questions, simply ask. Take care, Lynn

Hi Dooglas.
Hi Dooglass

My name is Linda, I’m a newbie to this site, I’m now 63 years old and was 61 when I was diagnosed. I received no treatment, advice, or support beyond an ongoing prescription of betablockers to help with the continuous migraines. My neurologist is currently monitoring every six months, and seems particularly interested in finding out if my Adem is morphing into MS. I have a full range of symptoms but thankfully have not experienced coma or paralysis as evidenced by so many on this site. I therefore decided to put in place a regime of self help. First port of call was my yoga teacher who conducted a one-on-one session with me to question me about my symptoms and then put together two programmes - one for ‘good’ days and one for ‘bad’. I can walk, but am limited by my chronic fatigue symptoms and badly impaired balance. Now I walk with Nordic poles on good days and walking sticks for support on bad days. There’s more but I won’t bore you at the moment. I hope that you find this helpful and I would be interested in hearing of anyone else’s tips for coping strategies. Good luck out there!

My name is Lynn and I was diagnosed with ADEM in May 2013. Feel free to look around the site. You may find some answers to your questions. You may already know, but we all have different symptoms and results. A couple of things I would like to share with you is this: People do get better, but it generally is a slow process. Recovery can be very frustrating. Please try to remain calm and stress free. Not an easy thing at times, but if you are stressed, it does not help your condition. Most of us are left with some kind of residual. Celebrate each and every improvement, no matter how small. Think about how your condition is today compared to yesterday, a month ago or at time of diagnosis. If you have questions or you just want to vent your feelings, please feel free. There is a good bit of knowledge on our site and we will try to help you find answers. Please keep us updated to your condition. We wish you the best. Lynn

Thanks for the welcome Lynn. :smile: