As LIS is an extremely rare condition, most medical teams have little knowledge and even less experience in dealing with it. In South Africa, for instance, only a couple of cases have ever been presented, so, when a new patient was moved to a rehabilitation inter-care centre recently, his brother, Emanuel, contacted me to ask for guidance. Here is my reply which I hope will be encouraging and helpful to all LIS sufferers and your loved ones.
‘Hi, Emanuel. I’m really glad your brother has been chosen for rehabilitation, which is a really positive step forward. When I got to rehab at Shenton Park, no one there was in the know either!!
I was a rare case, the first locked-in patient my excellent physiotherapist Alysha had ever come across. By this time, Jade and my Mum had organised a list which they posted on the wall by my bed for the benefit of the nurses. To keep this list up to date, they’d use the wordboard (or alphabet board) every day to ask me what I needed. Individual patient obviously have his/her own requirements, but here is a brief rundown of mine:
Hi! My name is Peter.
This is for all you Nurses!!!
PLEASE READ IT.
- Cream on my lower back every morning, please
- I blink my eyes to communicate –once for ‘yes’ , twice for ‘no’
- The first question I need to be asked is ‘Toilet?’
- I like a pillow at the bottom of my bed, please, to stop foot-drop!
- I like my pillows to be butterfly
- Please use my wordboard*
*(Give a brief description of how the wordboard works – yours may be different to mine. See my post:
This page includes a picture of my own wordboard, which should give you some idea.)
The nurses will all find it hard to get to grips with at first, but explain that this is your brother’s only means of communication and maybe show them my blog or even print it off to display on the wall by his bed. The biggest battle is getting everyone on side, so the easier you make it for the nurses; the more likely they’ll be to use it.
If your brother can understand you, tell him my secret:! To be nice! If you’re nice to everyone, they’ll be nice in return, taking care of you better and going the extra mile. Remember, it will help!!
No one wants to pick up a wordboard if they think you’re going to waste their time or make unpleasant remarks. A few compliments will do wonders, i.e. ‘You smell nice’, ‘I like you’, ‘You’re so kind’ etc. At the end of the day, they are your guardian angels and you must get them on your side. Visitors can do their part by bringing the occasional gift (a tray of cakes is a good one!) After all, the nursing staff is going to be family from now on. Don’t forget also, that most nurses are really pushed for time, rarely having enough to do their rounds – but sometimes they’ll go the extra mile, if you go the extra mile also!!
As the months pass it may seem less strange for your brother. Getting into the routine may take time, but I’m always here for you and hope my own experience will be of help. For me, settling into rehab was terrifying but hopeful too. It’s the not knowing that’s the frightening part! God, there were some tears, I can tell you!!! And, please give him this message from me:
“No matter how scared you are, you must find that inner strength to forget ‘what was’ for now and try to concentrate on ‘what is’!! Every day now is going to be a battle, from sunrise to sunset. Just let the nurses do their thing, try to be nice to them and they will help you, they are your arms for a while. Let you brain recover, and in time you’re going to improve – to what stage no one can say, not even the specialists. And, because no one really knows, don’t listen to negative opinions. And don’t waste your time asking EVERYONE – because, even if they knew unlikely), they’re not allowed to tell you!
Take one day at a time. I feel for you right now, and I do hope you make small gains quickly. Oh, and it does no harm talking to God, either, as He was the only person I could talk to in my head. Your communication will be hard for your brain right now (it will seem a joke), but you must work on getting some form of communication system going, as this will be everything for you, your family and the medical staff.
All the very best my friend There are plenty of us out here for you when you’re ready!!! So hang in there and think about wiggling them fingers now. Remember, THINKING is DOING! If you can’t move at first, don’t be put off. Even TRYING will send the signal from your brain to the rest of your body and, over time, that will become stronger until one day you might just twitch your finger or thumb!!!!
Hang tough and try to be brave….. AFTER A DARNED GOOD CRY!!!
I‘m here for you any time.”
Emanuel, I can’t imagine what your family is going through! I was the other side of things! Try to be positive with your brother; this one’s hard – but don’t cry around him if you can avoid it. Make him laugh whenever and however you can, as a positive outlook could be the key. I don’t know for sure, but after he’s into the daily routine the crying will subside and, with your help and the right motivation, things will change from “I can’t move!” to “I will beat this “!!!
The shock to the brain and the body is so bad, it may be many, many weeks or even months for the crying to subside. The doctors will put him on anti-depressants for sure!!!
Please keep me informed from time to time and remember, I’m thinking of you all. God be with you, your brother and all locked-in sufferers and their families.’