Job Done

I had two major commitments this week, and managed to sort them both today.

First and foremost, I had an appointment at the eye clinic at the local hospital. Unspectacular, in that my eyes are about as good as they were last time. But it’s good news if you take a longer-term view. I have had problems caused by diabetes for the last couple of years, but there has been no decrease in my vision for the last 6 months. Of course, this is the same kind of time frame as my stroke, and I’ve paid a lot more attention to my sugar since then. And the treatment I had 6 months ago, the consultant told me that they started with this treatment 5 years ago, so every time I see him he has statistics over that much longer a period. Promising. Also, I’m used to being pretty anonymous at these places, but today I happened to see my neighbour (who has MS) and his wife, so I had a little natter about nothing.

My second chore of the day was up at the hospital again (hence my combining the two things), and this was my regular drop-in to the stroke ward. There’s a lovely old boy there at the moment, his stroke has affected his speech so you have to be very patient, and listen carefully. He said that he hoped I could meet his wife at some point, and that he admired me (the last time we met, I’d told him about my own stroke and told him about my dead arm). I mean, this guy is really ever so intelligent, he’s just had all this shit happen to him, and he says he admired me. People can be so kind….

Anyway, that means that this week’s obligatory tasks are now complete. Actually I have another task planned, but this one is purely pleasure – tomorrow my wife (who has the week off) is driving me up to Oxford to have some lunch with an old friend, She had an operation just before Christmas, so she, like me, is recovering. This’ll be my furthest trip since the stroke.

Driving

Believe it or not, until about 5 years ago, I used to own a Porsche 911. It was a beautiful car, in fact I chose my featured image because it shows the same model and colour (although it is actually just a stock photo and mine was a cabriolet). I’d owned this car for years but for the last few I just drove it back and forth to the rail station, about 11km (7-8 mi) away. I had some expensive things go wrong with the car, and coincidentally, wanted to reduce my footprint.

I decided to buy a smaller car. Ideally I’d have liked a Smart car, although at that time my daughter was still living at home, so although the car mostly had an occupancy of just one, on occasion I needed for the car to seat all three of us.

The best car I found was a Toyota iQ. Although I always thought it was a bit ugly, I was impressed by the gadgetry, which most cars of that size/economy lacked. “Small” tended to equate to “bottom of the range”. So I went and bought one. Not that I could bring myself to part with the Porsche, however, this sat on the driveway for another six months!

By M 93 – Self-photographed, Attribution, https://commons.wikimedia.org/w/index.php?curid=7092528

I happily drove the iQ around for years, but in the meantime, Toyota obviously decided that the car was a flop, and ceased production.

Then, of course, the stroke took out my left hand, and I was unable to change gear (in the UK, our cars are right-hand drive and 90% of them are manual, so the left hand is required for changing gear). We still have the car – my wife prefers it to the family car that she used to drive, also daughter has since moved out so we don’t need anything so big.

For a few months after the stroke, my eyesight was such that I wouldn’t have been able to drive, period. However that has improved by now, although obviously I still have issues with my arm. I think it would be possible to drive an automatic – possibly I may need to modify it, but this is do-able at a price.

I always liked the iQ, and Toyota did make an automatic version, although since they no longer make the car, I’m restricted to the secondhand market. So that’s where I’m at currently – the only trouble is, these cars seem to be like rocking horse poo – very rare indeed! Especially as I’d need my wife to take me to the dealer for a test-drive, and I’m reluctant to make her drive any distance.

Theme Change

If anyone has been following this blog so far, I decided to play with the theme this morning. I’m sorry. The content is unchanged.

The first sign of health problems was trouble with my eyes – retinopathy – a couple of years ago. The first line of treatment was laser surgery – I knew no better at the time so didn’t object. This zapped the leaky cells at the back of my eyes. But the laser also zapped some good cells too. The upshot was that, as a combination of these two things, my eyesight is now less than perfect. I’ve never really been able to find the words to describe it accurately, but it is a bit like seeing everything as if you’re in a smoky room.

The upshot is that a bit of contrast seems to help. I did like the old pastel theme but, to be honest, stronger colours help when I preview the blog. And, since at the moment I’m probably the only person who looks at it, I started playing. It might not be over, although I do like the general “orangey” themes that I’ve used to date.

The irony of the laser surgery was that it didn’t stop the leaky blood vessels, so I lost a part of my sight for no gain. The follow-on treatment was to have some injections into my eye. Sounds like torture, doesn’t it? All I can say is that whilst the thought of the treatment is terrible, the injections themselves aren’t so bad. They anaesthetise your eyes beforehand (drops), so it feels quite removed from a “regular” injection. As far as I know, these injections are not-at-all destructive (although I suppose there is always the chance that they don’t help, either), so you’d think that they would be the preferred treatment. But again it all boils down to cost, and this really annoys me. Laser surgery is cheaper than these injections, so they try to laser your eye first.

As an aside, it is now a good 6 months since I had this treatment (last summer), I still have regular scans (in fact, I’m due one next week), and not only has the decrease in my eyesight been halted, it has been reversed slightly. To give an idea of the scale of this, it is often difficult to recognise detail immediately – it takes that little bit longer. The consultant says that I am still above the threshold at which I’m able to drive, although obviously the effects of the stroke make this problematic. I’ll talk about driving at some point.

Charities and Cutbacks

The Stroke Association decided to have a Q&A session on Facebook today, and I couldn’t help but be a little mischievous and ask them how many people they were firing on account of local authority cutbacks as they rebudget in April.

My local coordinator is being made redundant at the end of March because our local council is reducing its support, and I can’t imagine that Wiltshire Council is unique amongst UK councils. Nor do I imagine that the Stroke Association is unique among charities – organisations across the whole spectrum must be taking a hit.

I do find it particularly sad that, as the NHS itself delivers less and less, so too are charities being forced to do less because of funding cuts.

Unfortunately I never got a direct answer to my question, instead they fobbed me off, saying that the services offered by the charity would continue (so, by that logic, the people they’re getting rid of were sat on their hands in any case!), and inviting me to join some campaign mailing list.

Why is this kind of stuff not on the news in the evening? Why aren’t the Stroke Association being more vocal? Charities in general? I can buy that they want to keep the charity focused on the primary purpose of healthcare rather than on the politics surrounding it, but are the two not intertwined? One of the reasons I have always had an interest in politics – your basic values of right and wrong – is that it spills over into absolutely everything.

I must admit, I am less inclined to spend my time to help the charity, when they just appear to be rolling over. I’m not necessarily saying that you need to march the streets in protest, but at the very least you can point out the consequences of these cuts, and to let people judge for themselves whether they agree with them.

Is it that the people who care about these cuts are just the people who use the charities, and the majority of the population just don’t care?

Quiet

A quiet day with nothing planned. I think I’ll have a long soak in the bath later to celebrate…

Even though I’ve hardly been writing this blog for any time at all, I have already mentioned that people’s assumption that, as a stroke survivor, I am some helpless vegetable drives me mad. I think whether somebody sinks or swims in this situation is defined 95% by attitude.

Stroke or no, life just has to go on. For me, yesterday afternoon, this meant faffing around on the driveway installing a battery charger on our second (now dormant) car, which, I found to my cost, sits just a little bit too far from the power supply in my garage. One of those maintenance things which will keep it’s battery completely topped up. I was amazed how much smaller this thing is, compared to my old battery charger (which I still use occasionally, but which is by no means “smart”).

You know, if you’re going to move forward in life, you simply just need to “do” this kind of thing.

And I must admit, although I think of the day as empty, I now have a deeper understanding of what my HbA1c value means, as opposed to the value I read on my glucometer every morning. And my cholesterol numbers.

Post-FES and buses

My appointment went well and everyone is happy.

The only issue was that I had to get the bus up to the hospital, and it happened to be running about 15 minutes late. Unfortunately I couldn’t build in any slack (the buses only run every 90 minutes, and I made the appointment months ago, when I assumed my wife would be able to drop me off). But with no issues to complicate things, we were finished within half an hour, so the guy was easily on time for his next appointment.

I apologised, of course, for being late, but beyond apologising I just have to shrug my shoulders and explain that I’m at the mercy of our public transport system. People either understand or they don’t – but mostly they’re fine.

It’s funny – Google insist that the plural of “bus” is “busses”, but it looks wrong to me!

Green

If you detect a political slant to this blog, I must admit to being a member of the Green Party. This pre-dates my stroke slightly (by a couple of months), but is really quite recent in terms of the length of time I have been interested in politics. I never really found a party that was a good fit, but the Greens have been the best fit for a few years now.

I’ve always leaned slightly to the left, I suppose, and while early on I supported the (British) Labour Party, they are wedded to our current electoral system. Not only do I think it needs to be changed, but I think the issue is second only in importance to the environment. The Greeens say that too, plus they have the right idea on the environment. So anybody who can tick my top two boxes, I will support.

One area where I diverge from the Greens, however, is that they are very pro-EU, where I am not. I don’t think that the EU is particularly representative, and I think we need a representative democracy as a foundation, even before we start building policies on top. The EU isn’t that, and has no intention of becoming that. So I’ll pass. Frankly, Westminster isn’t that either, but let’s fight one battle at a time. If I wanted to be mischievous, I might ask why Greens don’t think the same way. Even if they said there were things wrong, but that on balance we are better off in, then it would be a start. But no … (Incidentally my view is a very left-wing Labour view, so maybe I am closer to them than I think?)

The Brexit issue is only a single issue, though, so hopefully we can agree to disagree on that one issue, and concentrate on all the things we do agree on. I mean, sure it is a big issue, but the environment is bigger.

But I’ll try to keep things on the blog logical, not ideological – I had to be very rational on account of my working life designing software (although my wife may disagree!) so I’m hoping it won’t be a problem here.

I suppose it is helpful to support a party with a name which is known the world over, I think pretty much all of us must have a Greeen Party. Even if they differ slightly, the general thrust will be the same. So international readers will know immediately whereabouts on the spectrum that I sit.

FES

I have a quiet week lined up. I try to restrict my week just to a couple of things, just so that I don’t overload my body.

The only thing showing this week is an appointment with the FES people. FES is Functional Electrical Stimulation, which involves sticking a pair of electrodes on my leg, and applying a small current when I walk. This stimulates the muscle that controls my foot, artificially raising my foot to give me a more natural gait. See? I’ll be you never knew there was so much that happens when you take a step!

I’ll talk a little bit about FES. Old hat? I mean, electricity has been around for 200 years, right? Wrong. FES is actually leading edge, at least in the medical world, so much so that the NHS does not provide this treatment as “standard” – In fact, I was only offered this treatment after they’d checked my address – apparently I live in the “right” county (Wiltshire) and am eligible for the treatment. Of course, this then raises the question about what treatments I haven’t been offered, because I live in the wrong place?

The equipment itself is a couple of electrodes stuck to my calf, as I’ve said, and these are attached by wire to a control box which sits on my belt. In addition, the thing needs to know when to apply the current, and so you also wear a small, flat pressure sensor on an insole in your shoe. this too is wired. So you have two wires which run pretty much the lengt of your leg, to this control box (in which, by the way, there sits a 9V battery).

Whilst it is true that the device does improve one’s gait (which means you walk faster), there is an offset here, and this is installing the device each day, making sure these wires are placed under your trousers. So whilst, for me, there is a gain, there is also a cost in that dressing becomes slightly more complicated and time-consuming. Consequently I find myself asking myself whether I’m going to walk anywhere that particular day? If I’m just going to stay around the house, it is quicker just not to fit the device that day.

When I first got the kit (and it is probably a reasonable question to ask why I didn’t get it until 6 months after I left hospital yet another to ask why I didn’t even know about it) I got back in touch with the people with some suggestions for improvements. As you might imagine, at the top of the list was to make the thing wireless. “Ah, we’ve already done that” was their reply. But I’d been given the more basic (and, presumably, cheaper) “wired” version. So there you go – by default an NHS patient won’t get the service at all, and even if an NHS patient does qualify, you’re not offered the bells-and-whistles version by default.

Of course, the bells-and-whistles gadget is available if you’re prepared to approach the company privately. The company is called Odstock Medical, although beware – you need to create a login in order to see the prices of their products (they say this is necessary because these things attract different duty depending on which country you live in, although I don’t see why they can’t quote a price which excludes duty). I am not sure whether these guys are the only company in the UK to offer such products.