Guillain-Barré Syndrome, Physiotherapy, and Strawberry Yazoo.
In writing anything about Guillain-Barré syndrome, or GBS, it’s important to know just how serious a condition it is. A rare neurological disorder, affecting the nerves in the feet, hands and limbs, causing numbness, weakness and pain. The immune system attacks these by mistake. We don’t really know how it’s caused but chest infections and stomach bugs commonly happen in the build up. GBS can present as a mild, brief weakness, but also a devastating paralysis. It can interfere with breathing and the heart, and be life-threatening.
Jamie (31), diagnosis: GBS.
I was dropped on to an intensive care unit (ICU) as a very junior physiotherapist. I still remember my 1st day, seeing rows of stationary people in beds, with wires and tubes sticking out of areas I didn’t know you could stick them.
It was in the ICU that I came across the curious case of 31 year old Jamie. He’d already been given a GBS diagnosis, couldn’t breathe for himself, and the only part of his body he could move was his eyes. Imagine not being able to speak to let someone know how you’re feeling. Imagine not even having a flicker of movement in your body. Imagine having a crease in your bed sheet under your bum. It’s been digging in for hours and it’s so uncomfortable, it feels like it’s burning. And you have no way of telling ANYONE that all you want is for someone to straighten it out to take your pain away.
The time to start seeing improvements is unpredictable. In Jamie’s case, days and weeks went by and nothing changed. At least it gave me plenty of time to get to know him. I had to try and understand his wants and needs through his eye movements. Cognitively, he was as sharp as anything.
Jamie found it very painful when sat up. But he’d sometimes choose to tolerate it because it made a change from staring at the ICU ceiling. I found out that he loved tennis. Smartphones were relatively new at the time. So every morning, after clearing his chest and performing his passive stretches, I’d hold up my phone to him, and scroll through BBC Sport’s tennis news. He’d blink twice for me to move on.
After 3 months of groundhog day, we started to see flickers in Jamie’s muscles. He would use every ounce of energy to do it and was now tolerating being sat up in the bed. So much so that we were able to transfer him to a PAT slide chair. This was a new gadget to me and it was essentially, Optimus Prime. A bed with pressure relieving properties (to protect skin), that you could press a button and transform it into a chair. We’d slide Jamie from his hospital bed to the PAT slide chair using a board to bridge the gap, and then press the magic button. Quite a novelty after laying flat for so long.
Jamie pops to the shops.
Jamie had not left the ICU in 4 months. The lead respiratory physio and I had a conversation about him, and in a moment of inspiration, we created a portable ICU and took Jamie shopping. To do this, he needed to be hooked up to everything so we could keep an eye on his heart rate, blood pressure, oxygen levels, respiratory rate, and temperature. And just as important, to not become unplugged from anything, such as the tubes helping him to breathe.
The plan was for us to take Jamie to WH Smiths in the PAT slide chair to buy a strawberry Yazoo - his favourite. En route, he signalled for us to stop, as he overlooked the main entrance of the hospital. It was at this moment that it happened. This was my best and proudest ever moment in physiotherapy. This moment was when I and my team saw the joy in watching a 31 year old man, people-watch.
I’m sure you’ll have seen those videos of children who get glasses and see their mum and dad for the 1st time. It was just as if Jamie was discovering people for the 1st time. Not the ones in uniform who were keeping him alive, clearing his airways, and desperately trying to relieve his pain. The ones who just go about their business in the NHS hustle and bustle of a normal day. I’ve never forgotten the look on his face. That was as mesmerising to me as people-watching was to him. I promise we did keep checking his observations, but we were also able to appreciate a fellow human taking joy in the mundane beauty of human existence.
After a few minutes we went into WH Smiths, and Jamie signalled to the shopkeeper what he wanted. We then put money in his hand so that he could complete the transaction of exchanging it for a strawberry Yazoo. A simple pleasure, but one that was especially sweet for having been so long denied.
And then it was over - for me.
It wasn’t long after this session that I rotated to another physio role in the community. I never saw Jamie again, but I’d always hoped that the next round of physios were able to take him to the next level. 6 months later, I was on call, and brought on to the ICU in the middle of the night to help the nurses clear someone’s chest. After treatment, the nurses offered me some left-over pizza. It was 3am and I started my actual shift in 5 hours, so I considered it breakfast. Just as I was signing off my patient notes, Ian the ICU consultant appeared and came over to ask if I remembered Jamie. Of course I did. Ian told me that Jamie walked into his clinic last week. He was using 2 sticks, but he was walking independently. And I cried.
What you CAN you do about GBS?
In most cases, GBS isn’t preventable. Although rare, you can do the smart things like eating healthily, exercising regularly, and washing your hands. As the precursor to GBS is usually an infection, anything that keeps your immune system boosted, and bugs avoided, will lower the risk.
I took the greatest pleasure in wheeling Jamie around the hospital that glorious day. However, in the nicest possible way, I don’t want to have to do that again. I was delighted to hear that Jamie had returned to walking and can only take comfort in the fact that I’d played my small part in his recovery. Even if the best bits were watching people and buying strawberry-flavoured milk.