Hi, I'm sorry to hear about your Mum.

My experience is a little similar but very different at the same time.

I have had three episodes of "generalised dystonia" or "locked in syndrome" or "cerebral posturing"..... Depending on what doctor I'm talking to.

Luckily my episodes have been just that....episodes.

While in that state my body stiffens my arms and legs extend, my back arches. I can't talk and I can't focus my eyes. However, I understand everything and feel everything. Oddly enough I feel disconnected from the emotion of it, it's as if it's happening to someone else. I remember at one stage having the ICU doctor leaning over and talking about brain damage etc and I was lying there thinking how handsome he was . I also made note that the hospital really should clean their air-conditioning vents more often. In my case there is a very clear disconnect between body and thought processes. My last episode was about two months ago and while I dread having another episode and perhaps even a permanent state, I still feel disconnected from it. I don't know if it's a defence mechanism to save your sanity or if it's a brain damage thing but if your Mum is experiencing anything like what I have, she is probably just emotionally disconnected and living within her own thoughts.

As for treatment, they tried the usual sedatives, antispasmodics, anti seizure meds etc. I didn't improve until they gave me huge doses of intravenous benzodiazepine. Even so I was "non verbal" for many hours after my body relaxed.

I didn't have any residual swallowing problems with this last episode but the episode before that, I had an inexperienced nurse (being kind to her here) try to force a tablet and water down my throat and I choked and had to have the fluid sucked from my lungs.

BTW, I saw a program on one of the cable TV channels ages ago where they gave patients in supposed long term comas or similar, Stillnox tablets and they responded well and emerged from their withdrawn state. The improvement only lasted while the tablet had an effect so they were very sparing with the dose and number of times they administered it. I think the documentary was made in South Africa. It could be interesting for you check out.