On the 1st January 2012, I started to move my head from side to side. Just a few centimetres each way, but it was voluntarily moving muscles in my body! Doctors told me that it was highly likely I would never move a muscle again. So needless to say, this was a big deal.
For the first time in 2 weeks I had real hope.
I became like a woman possessed. Whenever I could muster the energy, I would be moving my head and neck, each time trying to achieve an extra centimetre of movement. Every nurse, wardsman and doctor that came near me, was given a performance of my new trick.
THERAPY BEGINS (3rd January 2012)
It is very unusual to receive rehabilitation therapies in ICU. The physios on the ICU ward more commonly work to keep chests clear so that critically ill, immobile patients, do not develop pneumonia. After 2 weeks, my condition was quite stable. I was lucky enough to have 2 extremely proactive physios who had little experience with locked-in patients, but believed anything was possible and therapy was worth a shot.
Margot was a senior physiotherapist, in charge of the ICU. The more junior physio on the ward at the time was a young woman named Megan. Both these women had the most incredible bed-side manners. They explained that we should get started with whatever therapy we could manage to capitalise on any chance of recovery. For the first time I felt like I had some power in my situation. I was finally ‘doing’ something.
For the first few sessions the physios got me to try and move my limbs while visualising actual movement. They gave me a list of exercises to do on my arms and legs. Although my limbs were not moving, visualisation is a very important way of trying to rebuild connections between the brain and muscles and joints. It is incredible how much it feels like you are actually moving till you decide to look and realise it is not moving at all. It is also extraordinary how exhausting it is attempting to move a paralysed limb. It has been likened to an able bodied person pushing weights of 100kg.
So I spent every waking moment trying to move my arms and legs. My sister Ali and Dad became my militant coaches. When they came to visit, my exercise sheets were out of the drawer almost before they had said hello. Mum too was pretty vigilant but I’m sure it was largely due to fear of reprimand by Ali. I was pretty determined and most of the time didn’t require much encouragement. There were the occasional days (usually after a vomiting episode) that a few ‘Suck it up Princess’ were needed. For anyone thinking nearly dying and being paralysed in ICU will get you sympathy, I don’t recommend it. It is a lot of trouble to go to, to learn that the answer sadly is NO!
Family members then started to move my limbs for me as I performed my exercises. This provided more feedback to my brain, that we hoped would encourage new pathways to form.
The physios also explained to me that lying down long-term was not good for me. Getting vertical was the only way to ensure my body maintained it’s ability to regulate my blood pressure. Putting weight through my legs was also very important in keeping some condition in my legs. Enter … THE TILT TABLE. It sounds like an instrument of torture you say, …. well you’re not far wrong.
The tilt table is a padded physio table with a motor that allows it to tilt upwards. This allows patients to get in a more upright position. Moving me onto this table was quite an ordeal for the physios who had to ensure all my tubes remained in place. My body, legs and arms were then fastened down with large Velcro straps. The table was then lifted a few degrees at a time. My blood pressure was monitored regularly to check my body was coping with the position. My blood pressure was surprisingly stable, so I was able to spend much longer than expected at a much greater incline than expected.
The most uncomfortable part of being on the tilt table, was my lack of head support. When my head flopped forward or sideways, it became 4kg of weight hanging off my neck muscles. It was very uncomfortable and pretty painful. I of course had no way of attracting attention. If my head flopped I had to wait patiently for someone to notice.
The tilt table became a regular part of my routine. While it wasn’t exactly my idea of fun, I was able to appreciate how much effort the physios put into making it happen and what a privilege it was to have access to such therapy in ICU.
ANOTHER BREAKTHROUGH (5th January 2012)
The dramas with my locked jaw continued. The medical team decided to try Propofol. Propofol is an intravenous drug used in general anaesthetic. It also happens to be the drug that killed Michael Jackson.
Each afternoon a team came around to administer Propofol, allowing nursing staff to attend to my mouth infections and clean my teeth. I looked forward to it so much. Sounds kind of sick really, but as the drug was pushed into my IV, I knew that for 10 minutes, I would be truly at peace. It was the only time during the day, that I completely escaped the nightmare I was living.
On the 5th of January, my good friend Donnie was visiting as Propofol time came round. Propofol acts very quickly but it also wears off very quickly. So Donnie knew I wouldn’t be out for long and decided to stay.
As I came to, I opened my eyes to find Donnie standing beside my bed. I had a strange feeling in my right hand. It felt like I was moving it. I often was convinced I was moving muscles, only to be let down, so I didn’t want to get my hopes up.
I started blinking to let Donnie know I had something to say. I spelled out ‘hold hand’. Donnie thought I needed comfort and reached for my left hand. I blinked again. ‘Right hand, hold your hand.” He realised then that something was going on. “Do you want to hold my hand?” he asked. When he received the yes blink, he moved around the other side of the bed and curled my fingers around his hand.
“Well here goes” I thought. I squeezed with all my might. Donnie looked shocked. “Did you just squeeze my hand?” he asked. I squeezed again and again. I think we both had a tear in our eyes. Donnie quickly text Kel and my family. Steve, Mum and Ali were so excited, they jumped straight in the car, hospital bound. By the time they arrived, I had completely worn the muscles out and was unable to show them. I felt bad that I couldn’t show them, but they were so happy anyway. It was a very special moment, shared with a great friend.