There's always hope

involves demyelination in the spinal cord and in the brain. The demyelination in the brain is different than a demyelinating attack from MS; the lesions are scattered and do not appear in the same pattern as those from an MS attack.

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There's always hope

Postby yadman » Wed Jun 13, 2012 7:21 am

Hi all

Haven't posted here for a while as I've been incredibly busy.

I initially got ADEM in January 2009.

Spent 3 months in hospital where I was variously told I had Devics, MS, and just about everything under the sun until they finally diagnosed ADEM.

Lost my job through redundancy just after getting out of hospital (due to absence record! lol-one absence in my time there which did last a few months admittedly!)

Started working part time as I was still very tired and did not have full mobility especially in my right leg below the knee.

I will admit that I did feel sorry for myself for a while and kept thinking why has this happened to me?

Around a year after first beign diagnosed I remembered something which kepy me going while in hospital trying to do physio etc.

I had said to myself that I was gonna get back on my feet and do a marathon. At the time it seemed ridiculous but was a focus for me.

So there I was, unfit, without total control of my lower right leg, needing to sleep about 10-11 hrs each day.

Started to train and eat better. At first it was extremely hard. It took me almost 6 months to get to a point where I caould run for 30mins without stopping and even then it was very slow.

Booked myself in for the Edinburgh Marathon in 2011. As it turned out it was a bit too early as I pushed too hard in training and didn't give myself enough time to recover between sessions.

After recovering from the injury I booked this years Edinburgh marathon. Took my time with the training, not pushing too hard but listening to m body.

On the day of the race I was nervous but excited. Long story short I finished in a time of 6hrs 37 mins. Not gonna scaar Paula Radcliffe but I was proud of myself.

But one thing I've noticed, since starting the training I have more control of my right leg. It still locks sometimes and gives me a little pain from time to time but is definitely better. I am also only sleeping 6-7 hours a night now which was where I was before ADEM.

So for anyone living with ADEM don't lose the fight. Stay focussed and determined and things can get better.
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Re: There's always hope

Postby Shirley » Fri Jun 15, 2012 1:31 am

Amen to that, yadman. Congratulations on completing the marathon. You are an inspiration to us. :)
Keep well


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Re: There's always hope

Postby carrieanne » Mon Oct 01, 2012 10:16 am

Good for you!!! I need to exercise more, I'm getting older, I don't think I could jog one mile, let alone run 26 miles!!!!!

I had super memory loss and it would take me some time to comprehend things, etc, along with some of the other fun stuff that most deal with. I was struck with ADEM in January 2007. Its been a struggle, I've felt so stupid for so long, I used to be one of those founts of useless knowledge and my boyfriend referred to me as his memory card. Numbers confused me, technical things brought me to tears, it was awful and slowly got a little better. In Feb this year, I decided to take a big chance and now, I am in my second semester at community college and I remember stuff! Even algebra! It makes sense! The first month or so was grueling, I was exhausted and wondering what on earth I was thinking enrolling in school and how am I going to make it through this? Now I'm super excited for next semester when my chemistry classes start!!!!

There is definitely hope, we are not all doomed forever. We may all have some residual issues to deal with, they usually center around the bladder and bowel so that's no fun, but it is manageable.
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