BEFORE YOU START: Please note that although I currently volunteer for both the Stroke Association and Age UK, the views expressed in this blog are strictly my own. I am not a spokesperson for either (or, indeed, for any) organisation, and I accept complete responsibility for the views expressed herein. As indicated by the domain name, I am based in the UK and the blog therefore has a UK bias - I've tried to use the Glossary to explain any ambiguous terms, but if you think there is anything I've missed, please message me.
Friday, 12 April 2019
I talked about my disabilities in the past, but not so much recently. I have a kind-of overall attitude that nothing much is changing, so I don't bother talking about it. But, just in the last week, something has changed, so I thought I'd just publish a recap of where I am. I'll split this into a few subtopics, starting with the most general:
I still find myself off-balance, but am able to correct myself either by shifting my body weight or, more likely, by using some fixed object to stabilise myself. Fixed objects are often walls, etc. The distribution of my body weight must play a part, since I can be standing still and still lose my balance. I actually feel more balanced when I'm, say, walking, just because my momentum is carrying me is a particular direction anyway. Changing direction introduces wobbles, as does "pottering" (by which I mean, moving somewhere quite slowly, without much momentum)
I guess I've improved since leaving hospital, just in terms of using fixed objects for balance, just because I have to do so less often. But I still need to do it, so this is largely anecdotal. Certainly in hospital, when I first started walking again, I never used to go more than a step away from a handrail, although now I can walk from A to B, across open space. I do sometimes feel unbalanced while walking, but I can fix myself and don't fall over. Which leads me to:
I learned early on that, if I wanted to get somewhere, I could go a short distance, take a break, move another short distance, and so on, and eventually I would get there. Within reason. If you wanted me to walk a hundred miles, I'd probably decline! But with a shorter goal, I'm generally happy that I'd get there eventually.
This is all still the case. Just looking back to the start (it was an extreme condition, so easy to compare against) I have improved, just in the terms that the short distances have become a bit longer, the breaks have become shorter, etc. I can probably manage 100 yards or so, before I need to take a breath, my breaks can be as little as 10 seconds, or so. It also depends on the day and on how much I've walked already, so presumably on my energy levels.
So, like I say, I get there. I have timed myself over distance, and looked at the numbers. Google Maps is great to compare against, since it can measure quite fine distances, and can come up with a "walking time" estimate (such-and-such a journey will take you five minutes, etc.) . I'm about 2/3 the speed that Google assumes. Google assumes a constant speed, though, where I get slower as I tire. And, I'm not sure whether Google takes account of uphill/downhill.
I've found that often, the reason I need to stop is because lactic acid builds up in my good calf. Bear in mind that until the stroke, this was my weaker leg. But I've found that even if I stop for a break, when I start again it doesn't take long for the lactic acid to return. For that reason, I try to walk slowly enough that it doesn't become unbearable in the first place.
Interestingly, in terms of state benefits, I don't get anything for my restricted range. To qualify for benefits, you either need to have a range of less than 20m, or have issues even planning a journey. I didn't argue with that decision, because (a) mostly, I can walk more than 20 yards, and (b) I'm as capable of planning a journey as the next person. So, they applied the rules correctly. But it is a silly rule, if you ask me, just because I do face issues not faced by able-bodied people.
My eyesight does, at least, appear to have stabilised. Immediately after the stroke it was worse than it is now. It is still not 100%, though, and will never be so. Before, and around the time of, the stroke, I was having problems with my eyes and had both laser surgery and injections to try and help. But either the problems, or the treatment, has left permanent damage.
My short-distance vision is OK, it has worsened just naturally as part of ageing, but my longer-distance vision is not so good. In addition, my left eye is markedly worse than my right, which indicates to me that the stroke might have had an effect. I have prescription varifocal glasses which I'm supposed to wear all the time, although I only tend to wear them when going out, and often have to come hobbling back into the house, when I realise I've forgotten them.
I have been told by the hospital (who I still see) that my sight is still good enough to drive, although because of my arm I haven't even attempted to get behind the wheel. I'm not sure how valid my insurance would be, for a start!
The stroke affected my left side, and my left arm is effectively useless. I can move my arm, but if I lift it, it is a matter of seconds before it gives way. So even something like buttering a slice of bread, I have to do one-handed with my right hand. My left arm isn't good enough to help.
I have less movement, as you move out from my torso. There's good movement at my shoulder, less at my elbow, none at my wrist. Or, very little. My hand is funny because I can clench a very loose fist, but I have nothing when it comes to straightening my hand. It's difficult when there is nothing - when there's a flicker, I can keep working on it, but when there's nothing...
I mentioned that I could sort-of clench a fist - the thing about that is the effort required to do so. An able-bodied person would just do it without thinking, but for me, there is very much thought and effort involved. You can see my face grimace as I attempt to clench my fist.
Even then, I can't maintain the clench, so if I put a knife, say, into the fist, then it just drops out. So I can't really use the hand for anything. My arm isn't even strong enough to lift my hand for any length of time, even if I could. So practical things like holding a pen, or cutlery (or typing), are out.
So, in terms of benefits, this disability is what counts. There are all sorts of things which I can't do, which take considerably longer, or for which I need gadgets to help.
My leg is the same as my arm, only worse. It is the same story, in that I have movement at the hip, a bit less at the knee, and nothing at the ankle. With this combination, however, I can walk, albeit with a very obvious limp. Because there is no movement at my ankle, it has become stiffer. The flexibility of an able-bodied ankle provides a form of suspension. The inflexibility of my gammy ankle means that I find it less easy to cope with non-flat surfaces. In practise, this manifests itself as a "twisted ankle" feeling quite often if I walk on non-paved ground.
The reason I say "worse" is simply because when I get to my ankle and foot, there is nothing. So, even the equivalent of clenching a fist is out. A very recent development is that I might have worked out how to move my foot slightly, but....millimetres - and not something I can just do at will - I'm baffled why I can do it some times and not others. It was such a small flicker of a movement that I had to ask my wife to keep hold of my foot, just to see if she could feel any movement. And, to move those millimetres, the effort and grimaces were enormous. But as I say, at least with a flicker, I have something to work on. But mostly, I have no use of my ankle or foot.
There is a knock-on effect to this in that my lower leg frms a kind-of arc when I walk. So it not just goes in one plane, but goes outward too. Consequently, I need a wider space to get through. This is a small thing, inasmuch as it only comes into play infrequently. But when it does come into play, I lose my balance.