I’ve recently been in contact with the close relative of a locked-in patient in a hospital 1,500 km away who doctors say will never recover. This is my (slightly edited) reply and I hope it will support and encourage everyone with a loved one suffering from this terrifying condition:
“I hope your brother finds a way to break out of locked-in syndrome. I had lots of regular support at my side to stop me going crazy and help me communicate.
If you want your loved one to increase his chances, I recommend moving closer.
I can’t stress how important your daily visits will be to him. No amount of visits can destroy his chances of recovery. On the contrary…..
Talking, crying, laughing, more crying – the early day are simply hell!
To get things moving, if he can, he needs you, or someone close to him. You may feel helpless but your just being there will do more for him than you could possibly imagine!
I simply couldn’t have done what I have done without visits from my loved ones; every day for 4 months then, when I had improved, every 3 days or so.
It may not be possible for you, but I’m just telling you that’s why I managed to do what I have done.
I hope and pray things improve for you and that your loved one makes a full recovery.
Support from friends and family is the key!”