After a couple of months of attending the rehabilitation unit I had a review, and during it I was encouraged to set goals. I told them I had two main goals that were important to me. The first was, I wanted to be able to attend my nieces’ wedding in August. The second was, I wanted to be able to walk my dog Dexter by myself, and I set a date that I wanted to be doing that by, which was 3/8/15.
To help me reach the goal of walking Dexter myself, an OT assistant visited to help me take him to the playing fields at the end of my street. I’ve mentioned in a previous blog that I had problems with bending forward, if I bent too far I would lose my balance and fall forward, and I could never judge when it would happen, one minute I’m okay and then the next minute this ‘klunk’ in my head would occur and I would fall forward! You are probably wondering why I’m making that random point in the middle of talking about walking my dog! It’s relevant because Dexter had a poo on this walk and the OT assistant was too squeamish to pick it up! So I said I would try but that I was worried I would bend too far and fall face first in dog muck! So she held on to the hood of my coat as I bent to pick it up!
My diary entry for that day (July 20th 2015) read: “I was so happy at managing the walk down to the playing field with only a few wobbles, it won’t be long before I’ll be walking Dexter on my own”. I then made a re-entry – under that original entry – on December 19th 2015, and this new entry said: “how wrong I was”. I had truly believed that I would be able to manage to go out on my own with Dexter within the next month or two, that the wobble that I spoke of would disappear once my balance had improved a bit more through the physiotherapy exercises I was doing. However, I go on to write in that second entry of December: “when I made the original comment I hadn’t been to visit Miss Myles (the neurosurgeon who operated on me). I had an appointment with her in the September and she explained the reason for the ‘wobble’”.
When I was at the appointment with Miss Myles I had told her that there had been several occasions when I would fall for no reason, it was as if my legs gave way. The worst time was when I was with Lesley (my partners mum) and I was trying to walk up an embankment to get a seat by the river. The moment I went to take a step up this slight embankment I crumbled to the floor. Lesley grabbed me and tried to help me back up but when I stood up the same thing happened. I bum shuffled back on to even ground, but I had no explanation for what had happened. Miss Myles explained it to me. As a result of the cyst stretching and damaging nerves in the brain stem and cerebellum, my proprioception had been impaired. I had never heard of proprioception before, but after learning what it meant it explained a lot of experiences I’d had before and after surgery. I will try my best to explain what proprioception means, although it took me a while to get my head around the meaning!
Proprioception is the sense of knowing where your body parts are in space. For example, if you were to close your eyes and wave your hand about, you will know where your hand is in space, even though it’s not being detected by any of the other senses. That made me remember the months before I knew about the cyst, I use to wake up and have the bizarre feeling of not knowing where my body was. I would lay in bed and look over my body and only then could I raise my arms or bring my legs out of the side of the bed. I use to think I’d drank too much the night before and my brain was still ‘alcohol foggy’!
Proprioceptors – sensory receptors located in muscles, tendons and joints – relay information about motion, tension and position to the brain and that’s what makes us aware of our body position and movement in space, these are unconscious processes. Without proprioception we would not be able to walk without watching where we put our feet. And that is why I kept falling or stumbling, and more so when I walked on uneven terrain or gradients, my brain wasn’t getting the information that there had been a change underfoot and so didn’t know to adjust my posture and balance to compensate for that. Miss Myles told me that my vision was the only thing that was giving my brain this information, so I needed to look at where I was walking at all times. Knowing this helped a bit with my mobility, but sadly, I also found that my brain didn’t just need to see, it also needs to concentrate on walking, so even if I’m looking at where I’m walking I still stumble, and this is because my brain can’t filter out sounds and sights. So, for example, if a car horn beeps, or a dog barks, my brain gets distracted by the sound and thus loses focus and attention on walking and that’s when I’ll stumble.
Miss Myles also warned me to be careful with the dark nights drawing in, as I would be more at risks of falls as the brain struggled to see where I was walking. This got me thinking, what would happen if I tried to walk with my eyes shut! Stupidly I tried it, if I stayed still with my eyes shut I was okay for a few seconds, but after that I started to sway. But if I tried to walk, it was the strangest thing, I couldn’t even lift my leg, when I tried it was as if there was a magnet attached keeping it locked to the floor. I told the physiotherapist what I had tried to do, she was horrified! She said I could have fallen and seriously hurt myself and not try do it again…I still try to do it to this day!
Miss Myles did offer hope with regard my neurological deficits, she said the brain was amazing in that it could rewire itself, this is known as neuroplasticity. So for the parts of the brain that were damaged, rewiring of the brain can make it possible for a function previously managed by that damaged area to be taken over by another undamaged area. It was likened to a diversion in a road. The quickest, smoothest route to get from A to B has a diversion in place. This diversion takes you a longer way round and along a bumpier, windier road, but it still gets you to your destination. So too, neurons in the brain create new pathways to compensate for the damaged pathways in order to carry out a task, it may take longer for that task to be done, and it may not be as efficient as before, but at least there is hope of completing it.
This appointment with Miss Myles helped me understand more about my neurological deficits, and offered me hope and made me more determined to do everything I could to become the best Elaine I could post-surgery.