Many regular visitors to this site (and most of my friends) will be aware that I live with Visual Stress. For the most part it just means I wear snazzy orange glasses and can’t drive. Other less obvious elements are my lack of depth perception, terrible night vision and sensitivity to blue light. I used to hesitate to call myself visually Impaired, simply because for the most part it’s just my normal..
I’ve only recently come to realise that I’ve actually been using a whole lot of coping strategies for the vast majority of my life. Trailing my hands down walls at night, linking arms with companions as we walk, putting walking sticks down steps ahead of me so I know how far the drop is, unconsciously selecting high contrast colour schemes in warm tones, only reading second hand books so the pages have yellowed.
This is the social model of disability in action, as long as my environment meets my needs I can function just fine. The trouble is that as a home owning, self-employed, travels-for-work adult I have to be able to function in a wider variety of scenarios and environments.
So, over the last few months I’ve been carefully thinking about ways to make me more functional. Too explain the process I’m going to take a closer look at what makes up ‘balance’.
Balance is the ability to maintain the body’s center of mass over its base of support.
A properly functioning balance system allows humans to see clearly while moving, identify orientation with respect to gravity, determine direction and speed of movement, and make automatic postural adjustments to maintain posture and stability in various conditions and activities. Vestibular.org
Sounds simple enough, if your body is in working order you should be able to see where you’re going when you’re moving, tell up & down, left & right and automatically adapt to changes during activity.
The body’s’ ability to do this is reliant on a lot of different elements.
You body receives constant input from various systems including your eyes, muscles & ligaments and vestibular organs.
You get visual information from your eyes, track movement, depth and identify surrounding objects. Your visual feedback helps to orient you within your environment. This helps to put your movements into context. Hand eye coordination etc.
Muscles and ligaments help to provide detailed information about what your body is doing. This ‘proprioceptive’ information from the skin, muscles, and joints comes from receptors that sense stretch or pressure. Lean forward and feel the pressure through your toes. Move any part of your body and your brain gets information about where your body is and what it’s doing.
The vestibular system is your inner ear. These systems provide information to the brain about motion, equilibrium and spatial orientation. Which is why ear infections can make you feel dizzy.
These elements all combine to provide your brain with the information it needs to keep you upright and moving in the right direction.
Another relevent factor here is your autonomic system. Your autonomic system is in charge of regulating all the automatic functions of the body, this includes things like blood pressure, heart rate, the way your eyes react to changes in light, sweating and swallowing. You can have the most accurate sensory information in the world but if your blood pressure is low you still end up in a heap on the floor.
So we know how it should all work.. lets take a little look at how my body works.
Visual. Well, my eyes don’t work too badly but somewhere between the eye and my brain the signals get a little scrambled and everything comes out with static over it. My eyes also don’t work particularly well together so depth perception is an issue. ‘Really small’ and ‘far away’ look pretty much the same. Lots of glare off bright lights too.
Proprioception. Having super stretchy ligaments means that stretch receptors are a little inaccurate, wobbly muscles give worse feedback too. Stretchy skin also doesn’t feel the pull of stretched positions so not much feedback there either. Not really sure where I am in relation to space unless I actually look most of the time. Every few steps it’s advisable to check my feet are still going where they’re meant to.
Vestibular. Not too bad here just a little bit of non-specific, low level rubbishness.. sort of like age related decline but without the need to actually get old.
Autonomic System. A whole host of issues here thanks to PoTS. Blood pressure and heart rate are normally medicated to within the realms of normal but there’s often a bit of a lag after postural changes where my body desperately tries to catch up. My eyes don’t adapt very quickly (at all) to changes in light level and sometimes try to adapt when the light level hasnt changed.
So, simply put I have minor issues with pretty much every element of balance. This is kind of a theme for a lot of people with multiple overlapping conditions. You can’t really tell where one condition ends and the next one begins. Different symptoms combine to cause new and complicated issues.
My balance is seriously effected by my PoTS so I have much better sitting balance than standing. Sitting (as a wheelchair user), I don’t have to worry too much about falling over. Walking, I have to concentrate in order to walk well rather than just stagger from place to place. This is even more of an issue at night when I can’t see kerbs or steps and shadows look the same as potholes. It doesn’t take much to lose your confidence with walking when each time you fall off a kerb it jars your back and twists an ankle.
With this in mind I contacted Sensing Change, and enquired about using a long cane when I’m out and about at night. After a discussion almost as long as this blog post the person on the phone agreed it was a smart idea. Neither of us was sure if it would work for me or even if my wrists would tolerate it.
Today I had my first training session with a long cane. Something amazing happened. I could walk in a totally straight line. Without looking at my feet.
The added sensory feedback from using the cane made an absolutely huge difference to the quality of my walking, not only was my balance better but my ability multi-task too. I could look at my surroundings without it impacting the direction I was walking in. I didn’t snag my feet as I walked, no wobbles, no changes in speed or direction and it didn’t take up all my conscious thought. The environment we were practicing in was pretty good for me visually so I wasn’t expecting to get much benefit besides learning the actual techniques. Instead it was like using the cane actually compensated for my proprioceptive issues too. It felt like using the cane freed up some of my brain for other tasks which is odd because I’m actually asking my brain to do more.
We were practicing on the balcony of a local sports centre and off to the side and below us there were people playing carpet bowls and another group on trampolines. I asked my wonderful trainer to take a video. You can see it below. If you haven’t seen me walk normally you won’t be able to tell the difference but imagine someone who’s a little drunk, has ligaments made of chewing gum and is wearing shoes 3 sizes too big.
When I phoned my mum to tell her I could walk in a straight line while watching trampolining off to one side we both got a little emotional.
Lesson 2 is next week and we’ll be tackling stairs. I’m really excited. Today was absolutely best case scenario. Aids and adaptations can make such an amazing difference, today just goes to show you should never stop looking for the perfect adaptation. The result might be a total surprise.