So how did I communicate, I hear you ask?
Well I went through many 'phases', shall we say; firstly I rolled my eyes up for yes and then down for no. Seriously it was awful. You're stuck inside your own mind, all these thoughts rushing around your head and you have absolutely no way of telling anyone. You can only answer to yes or no questions. I'm also a bit of perfectionist/have a bit of OCD so I always want things a certain way, well my way. So when I got a pain or ache in my neck from being in a crooked position, obviously I couldn't tell them or point to the problem so I just waited for them to move my neck. It was like trial and error. The nurses would work their way through a list of body parts until I rolled my eyes up for yes.
Second, I would squeeze people's hands, once I had regained a little movement in my right hand. And I really mean little. The 'squeeze' was encouraged but often failed through me getting fatigued, so my trusty eye rolling was my fall-back.
You know just after you've woken up and you feel like all your strength has just disappeared? Like, you can't squeeze your hand tightly for a while? That's what it was like.
Then I used an E-tran frame. (For those that don't know, I'm sorry I couldn't post a picture, it won't work!) :(
So it's a clear plastic frame with a hole in the middle. The person you are talking to raises the frame up so that their head is in the hole. The person talking then uses eye gaze to indicate on the frame what letter they want.
Yes, it was very tiring and an extremely long way of communicating, but hey, it had to be done.
Then after I moved hospital, to the rehabilitation unit in Northwick Park Hospital, my right hand gradually improved and I then learnt how to write again. I got through a good number of notepads! My writing was sometimes unintelligible but that's where my Litewriter came in; a device where I typed what I wanted to say and it then spoke what I'd written. It opened up a whole new world of communication for me, I could ask nurses what I wanted, if they wanted to move me I could say exactly how I wanted to be moved so 100% comfort was achieved. It was great. Obviously not as great as using your actual voice but good all the same.
I even had a proper conversation about the 'X Factor' with a fellow patients daughter one evening.
I remember trying to get my voice to come back every lunchtime. While my neighbour scoffed down her chicken nuggets, I would lay there forcing out my voice. I tensed my barely-there stomach muscles and pushed. But nothing. Not even a squeak.
So instead I circulated my tongue around my teeth and pulled all sorts of different faces to practice my facial expressions.
Rehabilitation of my voice was tiresome and involved a lot of weird tasks, such as blowing bubbles and saying 'Aaah!' at random times of the day. Speech therapy was always something that I looked forward to. My therapist, a young, happy and very bouncy lady, made me enjoy it more, her enthusiasm and constant jokes were something I missed on the weekends.
My voiced returned in January of 2013 (hurray!) much to everyone's surprise. My usual therapist had gone on holiday for the week so in her place, I had a fellow speech therapist who never failed to make me laugh. He would see me on the ward and ask me to say 'Aaah!' as loud as I could. He was probably one of the only people to really care for his patients and their wellbeing and his efforts to get patients to get the most out of their rehab was amazing.
I was simply saying 'Aaah' and then he asked me to try and shape my mouth into a word. It worked! Then he just asked, 'Try and say the days of the week..?' So I did.
My voice back then was extremely quiet and very poorly articulated but I still done it.
Hallelujah!
And then the real hard work started. I had 2 hours of speech therapy nearly everyday where we would focus on articulation exercises and projecting my voice.
I remember shouting 'I AM SPARTACUS!' over and over in one session. The stuff I used to do...
When I was discharged from hospital on the 4th July 2013, my voice was still fairly weak, in comparison to how it is now.
Since my discharge I have worked so hard on getting it even better; louder and better articulated. And by god, has it improved. Ok it's not 100% but its sooooo much better than when I could only really whisper sentences.
However good it is now, I still play it down. I can't seem to help it. Then when I met with Daisy yesterday she was like 'your voice is so good! It's fully understandable!!'. Oh well...
Another thing I've found that improves it is confidence. When meeting people for the first time it can be quieter (not really quiet but quieter). Then once I get talking then I'm fine, I'm comfortable with myself and in that persons company and my 'guard' comes down and I become the chattiest person.. ever.
For anyone else suffering with a voice problem after stroke, I just recommend constantly talking. Whether it can't be understood, just talk. That's the only real way it'll improve and your confidence will boost.
So talk.
Even if people tell you to shut up or you haven't quite got your voice back yet, just mouth words instead.
:)
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