Disclaimer

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.

Thursday, 20 June 2019

Water Into Wine

I'm very good these days at turning a negative into a positive. Let's face it there aew so many negatives!

I've run out of Pyrex bowls in which to cook my porridge. I'm just trying to wait for the dishwasher to be full before I put it on, so a couple of empty bowls are in there waiting to be washed.

Havever, I need breakfast, I NEED breakfast, and remembered some Pains au chocolat in the freezer, ready to bake. I mean, porridge may be good for my carbs but....fuck it!

I just need to train myself not to burn my tongue, and let them cool a while as I get them out of the oven!

Wednesday, 19 June 2019

Trapped

Meant to mention, lunch from hell last week.

4 hours, 10 miles from home (far too far to just walk out). I wouldn't mind, I've now kicked off my new development project so I had definite things to do once I got home. I don't work particularly quickly these days but there is at least a to-do list.

Still, made the decision for next time a no-brainer!

I heart Paris!

I saw a nice surprise yesterday. Way back in a previous lifetime I used to read a particular blog. I shan't use the blog's name because, the Internet being what it is, that'll probably give the author's identity away in 2 seconds flat! Her tale was interesting anyway, plus she was an English woman living in Paris. I used to love it there and would have liked to have lived in Paris myself, although my choice of career made that impossible. In IT you tend to regard London, New York and possibly Sydney as the places to be, and I was lucky enough to work London and New York - something like IT is very Anglo-Saxon and France is, well, French! We must've been around the same age, had kids the same age, etc. I think mine was a bit older than her's - enough at least for me to easily remember what life was like bringing up a young kid. We diverged because whilst I was settled down by then, she was going through the turbulence that is life - maybe that was partly why she was interesting, because she was experiencing something different to what I had? 

The woman wrote in a time when a good blog could lead to a book deal (maybe it still can? Reading - actual paper books - is too much effort for me these days so I don't keep up) and she duly published stuff. I definitely remember reading the first, but it was largely a re-hash of the blog, so I think I stopped at one.

At some time later I got myself a Facebook account, and must have said I "liked" this woman - she was on Facebook too but I don't think she wrote the blog any more by that time. I must've re-read her book at some point.

I forgot about it until I logged on yesterday and saw a post from her, linking to a fresh blog she now writes. Lots of water under the bridge etc., and she now writes from the perspective of having bipolar problems. There are parallels there with this blog, where I write from the perspective of having had a stroke, although obviously one is mental and the other physical.

I think a big marker, not really of recovery, but of whether you manage the illness or the illness manages you, is that our horizons get broader - like they used to be before we knew it could be different. Certainly for me - I suppose I can't speak for anyone else. Health once again became a subject, one of several, rather than the subject. I notice these days that I write a lot about politics - I mean, of course I agree with this stuff because I wrote it, but I expect it would bore everyone else to tears! But the point is that the posts have moved beyond the subject of stroke. I always said that I didn't want the stroke to define me, and political posts show that it doesn't any more. Politics is a bit of a cop-out, because you can engage from the comfort of your armchair (and I do!) but you're still contemplating something other than your health and your mortality.

Another, more direct, reason for me to blog is to record my physical recovery. One day I walked 10 yards, the next 20, and so on. So to a large extent, I don't really care how interesting the blog is to other people - it's a bonus if you enjoy it too, but really, I write it mainly for me. I guess writing on different subjects charts recovery too, but altogether more subtly. I've always thought of myself as long-winded, but rather than fitting into a newspaper story, I can use the blog to properly explore issues, so long-winded deliberately doesn't bother me. My posts are as long as I feel like writing about something.

I scanned through the new blog yesterday and saw posts on what seems like a variety of subjects - there's certainly been a change over the last couple of years, and seems to have moved away from health. I hope that's an indicator of recovery from her perspective too, claiming life back for herself. The posts are quite infrequent, so presumably there is a whole load of other shit going on, and the blog is just the stuff she chooses to share with the world. I don't detect a lot of conscious "recovery" stuff, but there again for something mental, how does one quantify recovery? I suppose that, like me, you set yourself goals, but unlike me thost goals will be mostly subjective. What might be a mountain for one person will be a molehill for the next.

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Incidentally...trying to work things out...I think the last time I was in Paris was in 2008.

I used to visit maybe one weekend a month back in the nineties, before I went to the US, before marriage, before parenthood, before flying was bad! I used to live in and fly from Southampton, and home-to-city-centre could be as little as a couple of hours. The areas I knew well were those around the fifth and thirteenth arondissements, a bit out, the area around the Rue Mouffetard out to the Place d'Italie, if those places mean anything to you.  I used to stay in a tiny hotel on the Rue Censier.

I used to love going to the Louvre on Sundays before I flew home, first because it was free on a Sunday. and second, because the bus to Charles de Gaulle went from the nearby Opera. Even now, if I had to pick a favourite artist, Corot would be right up there. My wardrobe was mostly French, and as I got better jobs I used to frequent the Rue du Faubourg rather than the Galeries LaFayette. I'd have places to myself when I shopped - Saturday morning was my favourite - because other folk wouldn't get up until lunchtime!

But Paris was really my bachelor playground and after I got together with my wife, and certainly after my daughter was born, we still went to France regularly, but stays in Paris were sparse. I have a friend who still lives just outside so we would meet up occasionally, and kids with very little else in common (including language!) would play together for a few hours. Daughter and I did the obligatory trip up the Eiffel Tower etc. - if it hadn't been for her, I wouldn't have bothered but it was worth it just to see her face when we came out of Bir-Hakeim and she saw the tower for the first time. I think the last time, we took a day trip there - Christmas shopping - from one of our new favourite haunts, Rouen, and had to fight our way through the crowds on the Boulevard Haussmann.

I don't now know when, or even whether, I'll get back there given my mobility these days. And, I'm reluctant to travel without money coming in. It's one of a long list of places with very fond memories, but not really vital to go back to.

Monday, 17 June 2019

Don't Ask

Partially as a result of my volunteering, I follow an Age UK news feed.

Last week, the UK's BBC announced plans to scrap a concession, that there is no need to pay for the license if you are over 75. If you're under, I think the rule is per-household (so if a household has 10 TVs at the same address, you only pay the fee once), but although this tax goes to the BBC, it covers any live streaming into your household, even, say, if you use the BBC's iPlayer to watch live tv on your iPad. As the Internet has developed, however, the line has become blurry - while you need a license to watch anything being broadcast live, you don't need one to watch YouTube videos, say, because they're not live.

I mean, it is to all intents and purposes one of those indirect taxes which people are just conditioned to pay. Whenever the subject is raised, there are always calls for a rethink on this tax. I must admit I can see two sides to the issue - on the one hand, it seems a very old-fashioned way to fund a broadcaster, and even the BBC has introduced subscription-only feeds of some of its content, so it seems to be moving away from that model. On the other hand, it is handy not to have content directly controlled by advertisers. Of course, add to this mix the fact that the BBC seems quite wasteful - digital projects costing millions have been canned with no tangible results, well-known presenters have been paid in the millions for their services - and it all becomes quite murky indeed.

Anyway, to raise more money the BBC wants to scrap this concession. That's the headline at least, although in the fine print, the plan is to keep the exemption for people on some benefit. So, I asked a question of this charity - how many people will this rule-change actually affect? How many over-75s are in receipt of this benefit, so will still not be required to pay?

Even within that question, there is grey area. It is accepted that many people who are eligible for the benefit, don't actually claim it. But I thought that there, the Age charity might have estimates. I have heard it said that some old people are too proud to claim the benefit and wish to live life standing on their own two feet - that may be true, but I suspect they don't come into this equation anyway, since they'll presumably be paying their £150/year fee regardless - because the over-75s concession is, after all, a benefit. What, I suspect, people mean when they say "too proud" is "it's easy to claim the concession currently because it is just a tick-box, but actually claiming the benefit is far more onerous". Which is something I can understand, having navigated the minefield of disability benefits. But, maybe that hits the nail on the head? Maybe the real issue is that we need to make this benefit easier to claim?

So I asked for these numbers. My hope was for the Age charity to respond, but they didn't. Instead about 20 other people did - some sensible answers but mostly negative in tone. I very much got the impression that I was being chided for daring to pose these questions. I mean, especially if somebody is campaigning for something, they should expect to be scrutinised. Even then, all I did was to scratch the surface.

One particularly offensive woman said that the numbers didn't matter because the whole thing was a misogynistic plot (given that women tend to live longer and would therefore pay for more years, there's a kind-of logic to that), and that being male, I came from a privileged background and couldn't possibly empathise anyway. Her tone totally wound me up, so I introduced my disability and said that, yes, I felt very privileged. I don't like to bring my disability into things because it really shouldn't be relevant to all but a very small part of my life, but... And, when arguments like that are presented, I think they do immense harm to a cause because they changed my attitude from one of open-mindedness to one of hostility.

Ultimately my attempt to find out more was not particularly successful, I mean, the BBC have introduced this rule change so as to make money, so certainly some people will be affected, but how many? In principle I've got no problem with some 80yo millionaire having to cough up £150/year. I would, however, like to see the poorest people protected, but by exempting people who are in receipt of this benefit, isn't that what they're trying to do? I'm yet to hear an argument that isn't really motivated out of self-interest.

Friday, 14 June 2019

Junkie News

Yay! I've measured and recorded my blood results each day as normal. The values have been pretty unspectacular, 9s and 10s mostly. However every reading gets entered on a spreadsheet - there are now something like 1100 of them - and I wrote a macro to keep a rolling average. It calculates the value over the previous 50 days. So, my average today would have included whatever was calculated 50 days ago but not 51 days ago, my average yesterday would have included 51 days, not 52, and so on.

Because these few days of results were unspectacular, I was surprised to learn that my average for most of the last week has been sub-9 (mmol/l. That's about 160mg/dl). That's pretty much lower than it has ever been since I started measuring.

'Course, all you non-diabetics can scoff, your sugar will still be half of mine! And, I didn't see those numbers this week, but my current insulin dose will take me down into the fives, and will quite easily take me into hypoland if I eat a late meal.

On positive discrimination

It's funny - one of the artists I follow on Facebook is Tracy Chapman. You might have heard of her -she particularly had a string of hits from the late 1980s. She is American but obviously the music travelled across the Atlantic.

I guess those early hits must have set her up for life, and I noticed a while ago that she was doing philanthropic stuff like organising concerts, where unknown wannabe musicians could perform. I thought that this was a nice idea, except she restricted the performing musicians to women. Tough luck if you were a wannabe-famous male politician, I thought, and said as much.

I was quite quickly reminded that women needed all the help they could get, and that the recording industry is very top-heavy in terms of its white, male executives. That might all be true, but how does positive discrimination  help the struggling male musician?

Funnily enough I saw this same effect once in a left-wing organisation, an event which brough out something which I thought was far more sinister. This group happened to mention that they applied some rules to election results, meaning that elected officials were split 50:50, men and women. Ironically, in this organisation, it was not at all uncommon for more women to be elected "naturlly" than men, so the rule had the effect of bolstering the numbers of male electees. I made a comment, more in mischief in order to gauge reaction, and was really quite surprised at the hatefulness of the reactions. The lesson I took from that experience was that dissent is not allowed (and that is the sinister aspect, forget your broad church!).  The irony there is that there is an argument for positive discrimination, an example being to enforce quotas of men and women, provided such measures are seen as temporary, until an equilibrium is reached. But nobody actually put this argment to me, something else which I found disturbing. It was kind-of, people knew that positive discrimination was good, but did not know why, or rather when, it should be applied. So I had nothing further to do with the group, which was a shame because, on probably 70% of the group's policies, I was sympathetic, but they lost my support over their intolerance towards dissent.

It strikes me that if quotas are a problem, then yes, positive discrimination is a sticking plaster fix, but it doesn't really address the underlying causes. I think we, at the very least, need to devote a big chunk of our efforts to solving these.

Next PM

This Tory leadership contest. I mean, I am reluctant to say anything since I've never even been a supporter of the Tory party, let alone a member. But isn't it a good idea that its MPs get to express their preference, but that the entire membership gets the final say? The members can cast their vote, taking parliamentary preferences into account, but finally choosing somebody with broader appeal than just the Westminster bubble.

My only criticism of the process, really, is that their MPs whittle it down to a final two candidates before this members' vote happens. Surely, if they just whittled the list down to a half dozen, say, then the MPs could still be able to express a preference, as they did yesterday, but the membership would have a wider choice in selecting the leader?

If you have many candidates, as there were yesterday, then you could use the MPs vote, just to whittle the list down into a "top six", say. So, we'd know from a process such as yesterday's, that Boris Johnson is by quite a distance the favourite amongst MPs, say. That seems totally fair enough. If you have fewer than six candidates, then every candidate could be put forward to the members, but you could still have an initial MPs ballot, just to sort out their preferences. The only time this system falls down is if there is only one candidate, but in that scenario, the one candidate would automatically be the winner, whatever system you use.

My half-dozen number here is pretty arbitrary. I'd see a number large enough to give a decent choice, but small enough that filling out the ballot paper does not become overwhelming. In parliamentary elections, it's not unheard of to have a dozen or so candidates, so I'm sure six would be bearable.

I mean, if you wanted even more from your process, you could get people to express an order of preference, pick your top three candidates, say, although it'd be difficult for the Tories to use such a system internally, while at the same time resisting any proportionality in terms of parliamentary elections. But it boils down to a simple choice : would you sooner have a leader who, say, received 50.1% of people's first choice, but 0% of their other choices, or would you sooner have someone with 49.9% of people's first choices, but with >50% of people's second choices. It seems to me that the latter person, more people would describe them as "acceptable".

But, as I say, this is all centred around a party which I find unacceptable anyway, so not something I am prepared to get too animated about. These people, from the outset, have a different idea of representation to mine.

Thursday, 13 June 2019

Why do so few people get involved?

My wife and I were at something called a "Step Out" event in Salisbury last Saturday. The event is specifically designed as a sponsored walk for stroke survivors, even on a paved path so, if needs be, you can complete the course in your wheelchair. The course was, in total, three laps of a Salisbury park, making a mile in total. It was the distance which attracted me - I've never managed that far since the stroke, but I made it - albeit with one or two - or ten or twelve! - breaks along the way.

It probably took me about ¾hour to complete - that's just the speed I am these days. My wife somehow managed to keep up. Because my foot doesn't work, my lower leg acts like a kind-of pendulum. Anybody who remembers their high school physics will tell you that the period of a pendulum is dependent on its length and nothing else, so I'm kinda constrained by the length of my lower leg - things like faster and slower go out of the window.

Anyway, we got round, and that's how long it took. I was so knackered by the end of it I just went straight to the car, we drove home, and I hardly moved a muscle the rest of the day. That's how fatigue gets me. I thought back to the first time I rode my bike any kind of distance - a whopping 20 miles! - and I felt the same after that - just not enough energy even to move. A few years later and I was a bit fitter and did a hundred miler - furthest I ever rode - and felt the same afterwards. Legs like jelly for the following 24 hours.

Despite my personal triumph, I was a little disappointed that only two other people turned up. A guy and his son, probably looked about ten. They were able-bodied and ran the course. We spoke at the start, just to say Hi to each other, but of course they were finished long before I was so we didn't speak after. I'm not sure how able I'd have been, anyway. I think I'd seen this pair before, at another event (that time, we'd volunteered to help), but I've never heard of them apart from that. Presumably they too have some personal connection with stroke. So, just the four of us.

It does make me wonder - every fortnight I do my drop-in. Every fortnight, the ward is full - 28 beds. That must be a throughput of hundreds, if not thousands, per year. And yet, none of them comes to an event like this.

I understand only too well that some people must be left more disabled than I am - it's not uncommon to be housebound after a stroke - but equally, there must be people as-good-as-if-not-better than me? I mean, I had a full-blown stroke, I'm left without the use of my foot and my hand, I can't, seriously, be in better nick than anyone else who had a stroke?

It's funny, but at our coffee sessions at the Playhouse, I used to think and say the same. Why were there only ever four or five of us attended? When, as I say, thousands must've passed through that ward over the years. I mean, with the Playhouse, it was sometimes so sparsely-attended that I sat there on my own - I wasn't really prepared to do that, so in the end I stopped going too. I think that part of the problem with that group was just circumstances - nobody really came along after me. Maybe I scared everyone off??? But it was a group of survivors who'd had their strokes some time ago, several years in some cases, and who were all getting their lives back on track. Unsurprisingly, our get-togethers just competed with "life". For me it was a bit different - I was definitely still recovering and had time on my hands.

I don't know. I can't pretend I'm not disappointed that stroke survivors don't get more involved, but there's only really so much I can do personally. With the coffee group, and most definitely with the charity, I'd like/have liked for them to do well, but don't/didn't really feel that it is my responsibility. I will, of course, help where I can. For the coffee group, I wrote a web site and got leaflets printed up and distributed on the ward, for example. But it is funny - I felt that as soon as I was able, I had to reach out and find other people in the same boat, but obviously other survivors can't feel the same way.

Tick Tock

Hahaha - you have to take this stuff with a pinch of salt!

The stroke charity gave me a certificate yesteray for 100 hours voluntary work. I did say to the co-ordinator that the number was nonsense, but hey, it was just a bit of paper. In fairness, this woman has quite diligently recorded the time I've spent volunteering - since she joined last September! Her predecessors were a bit more variable. Certainly, going up to the hospital in the early days, I would go up to the hospital and not see another soul up there, apart obviously from the patients I visited. So, all-in-all, how anyone could even hazard a guess at how much time I've spent doing charity work is beyond me!

So I will try to hazard a guess myself. As a rule of thumb - I've been volunteering for approximately 3½ years. Every 2 weeks. So, that's 91 visits. There have been a few times when I haven't gone along, but not as many as you might think. If you think of an employee having 4-5 weeks off every 52, I've probably attended more regularly than that. We haven't gone on holiday much these last couple of years, don't forget.

So, let's say 85 visits. Then it starts getting harder. For each visit, I leave the house at 1:20pm and get back at 5pm, so, just in terms of "time away from home", that's 3½ hours per visit. Easy! That works out to 300 hours. But, not all of that time is spent at the hospital, a lot of time is spent travelling to and from. These days, I'm there for up to 1½ hours at a time, so that would be 127.5 hours actually on the ward. But this time itself fluctuates. Yesterday I was up there nearly 2 hours, but 1½ is really my safe maximum. As yesterday, visits tend to take the maximum amount of time these days, I think because we target patients a bit better with the help of staff, and we tend to chat to each patient for longer. But certainly that was not always the case - there have been times when I must've been in and out in 20 minutes flat. Equally, the bus times used to be different so I was up at the hospital slightly longer than I am now. 85 visits at 20 minutes per visit is only 30 hours! So, what do we say? Somewhere between 30 and 130 hours actually on the ward, is my best guess - that's a mighty big variation!. Time spent out of the house is a bit firmer, but you can't really count travel time as "work", can you? And, after all, when you're donating your time anyway, does it really matter?

Sunday, 9 June 2019

Maillot Jaune

I wish to pay homage to cycling. At 40, I had a bit of a paunch and decided that I wasn't getting any younger, so decided not to use the tube, in favour of cycling my two-stops-each-way instead. It took me a few years, but actually that short distance really helped with weight loss. So much that I rapidly dropped clothes sizes.

I reached the point, on a Friday afternoon, when I would miss not riding the bike at weekends. So, I bought a bike to use at home - a road bike, which is constrained to proper roads, but is good for speed and distance. This led to even longer rides still. It was not unusual for me to cover 300km/month - 200 miles? - on my bike. Mostly this was probably no more than a 50km/30mi radius from home, although I also took the bike on the ferry over to France for short breaks, and used to regularly put the bike on the rack when we went on holiday. In that manner, I cycled not just in France but also Luxembourg, Germany, Holland and Belgium. As you might imagine, starting at 40, I was never particularly a brilliant cyclist, but my enthusiasm was there.

I'd always quite liked professional cycle racing, but as somebody who was now a cyclist myself, I took a greater interest. I took days off from work to watch a few Tours of Britain, and even headed over to France a few times to watch Le Tour - I remember one year I flew the whole family out there for a few days so we could see a stage in the Pyrenees (the last time I flew). I loved track racing - passed all the training levels at my local track, Calshot, although they seemed only to want to train people for competition, which never really interested me - but I also went to meetings over in Flanders in Belgium - hallowed turf, the home of the sport. There was definitely something special about standing watching a race from the middle of a cycle track, with thousands of other peoplea a beer in one hand and a sausage in the other. And the professionals get up such a speed - in the region of 50 mph in some races - that each lap of the track is only 25s or so.

It turns out that stroke is a lot like cycling. When climbing a hill, for example, you've given your all, you're running on empty, but there is no alternative other than to keep going. Stopping isn't really an option, because you know you'll never get going again. Even over time, you'll get faster on a climb but you'll never stop giving 100%. You develop an attitude to keep going - in a large part, it really is a state of mind rather than anything physical. There is no "can't", there is only sweat and effort as you "do".

To a large extent stroke is similar. It can be, anyway. You can say "can't", you can spend all day every day in bed, but really, what is the point in doing that? You might as well just say your goodbyes and trot off. Especially somebody like me - the meds I take would do the job nicely, if I took enough of them. But, of course, I keep going. I climb that hill every day, just because that's my nature. And I do my charity stuff. I'm not sure how much I'm appreciated by stroke survivors - I know I'd have appreciated speaking to someone like me, but equally I know I'm not typical of survivors - but I know my clients at Age UK appreciate my calls.

Plus, of course, in more specific things. You have to walk a half mile to the end of the road. You try and walk it taking eight breaks instead of twelve, say. You try and make each break last one minute instead of five. And all the while, the lactic acid is building and you calves are screaming for you to stop. When I first started walking (and had recovered enough to even get to the road in the first place) it really was getting from one wooden bench to the next, where I could sit and rest. But, you keep going. And you improve, but like any sportsman, you can't ever get too satisfied, because there is always further to go.

Saturday, 8 June 2019

Audible Update (9th June 2019)

I must quickly mention my current, excellent Audible read. I've had a few disappointments recently but A Very British Coup seems excellent. It was written in the early Eighties about the late Eighties, so I suppose from that perspective, you could describe it as Dystopian.

Obviously with the word "coup" in the title, I had imagined that there might be some armed insurrection involved - that might still happen, I'm only part-way through - but despite the word "British" I hadn't realised that it would be set in the UK.

A left-wing government is elected, just through the normal electoral process that we have today. From Day #1, they are undermined - by the Civil Service, by the Secret Services, by the Americans, by the newspaper barons, by corrupt leaders of trade unions. I suspect this is the "coup" bit, as they are forcing the government out of office every bit as effectively as if they held a gun to their heads. It all sounds very 1970s - but also quite ominous in terms of Corbyn, now. I mean, none of this is particularly visionary - inasmuch as we know what we understand actions and reactions. It's just interesting to see the possible effects if a few people act in unison, nicely collated in one place.

I mean, it's written as a novel but really it seems to be a manual on how to topple a government. It's actually a very serious read, although it is dressed as fiction.You could imagine it still happening today, especially if ever we elected a government on an anti-establishment ticket.

It does kind-of make me think of how over-arching the establishment is, and how the odds are stacked against a government which wants to change things. Tony Benn used to say that when we have an election, it is not a vote to change the system, but merely to change its manager. The author, Chris Mullins, is a politician, by the way. Not really any surprise there. He held minor office in one of Blair's governments and I remember he wrote an entertaining autobiography about his time in office. Seemed to focus on the sheer impotency of junior ministers.

Wednesday, 5 June 2019

What's in a name?

I smile sometimes at the names of some stroke support groups. Not being critical - but I think you make a choice between punchy and ambiguous, and between precise and a mouthful. I never really managed to get a happy medium.

For example, around here the groups include the Onward Club and The Forward Club. Now, please don't get me wrong, I'm not criticising either of these groups or their names. Onward and Forward - those are directions in which we all want to move, surely?

In that, though, lies the rub. Unfortunately, neither name conveys anything about stroke without further digging.

I must admit when I struggled with this problem myself, I jumped the other way. Salisbury Stroke Support Group. The plus is that it described the nature of the group quite well. We should probably have had the word "peer" in there somewhere too. But all this has a minus, basically the name was a total mouthful, "peer" or not. Imagine typing all that into a web browser, say.

Our name was christened when the local coordinator for the stroke charity offered to get some flyers printed. In the end, that never happened, but it set us thinking. If we got the flyers printed, they would need to conform to an existing template. But at the time, we had nothing, so I thought "so what". It didn't stop other people criticising the template, but, in the end it boiled down to whether we wanted the leaflets or not.

The template required us to think of a name for the group. From experience, thinking up the name is the hardest part of any project! I was at a loss, although I did think we should have a name which went some way to conveying what we were. I was guided by a friend of mine, who was involved in a support group over in Essex. Harlow Stroke Support Group. If it could work in Harlow, why not Salisbury?

So, Salisbury Stroke Support Group was my suggestion. I took this to the group and it was agreed although with little interest. If we talked about the group previously, it was just to refer to it as the "Playhouse coffee group" or something. I didn't think we could use that as a title, so argued against it in favour of something else. No arguments.

In the end, the leaflet offer fell through, but the cost of a few leaflets was so trivial that I ploughed on and designed something myself. I was lucky in that, being computer-literate, I was familiar with how to approach such a task. It took a bit of time, but not much. But, of course if you come up with any kind of flyer, you need to call yourself something, so I stuck with the name.

Anyway, that was the history. Somebody did criticise the name later, but I just told they that changing the name would be fine by me, but if they wanted to print leaflets, they'd need to pay for that. And I'd happily tweak the web site, but they'd need to pay for renting a new domain name. Never heard another peep. But, of course, we ended up with a mouthful. I wonder if things might have been different, if we'd adopted a punchy name?

Tuesday, 4 June 2019

Shocked

I did my voluntary session today, as normal. I ring around some people, just to say hi and chat. I usually refer to these people as "clients", although there is more to it than that. Over the months you get to know people, they get to know you, so they become friends. In fact, I deliberately use the word "client" to remind myself that ultimately, this is professional. If they decided they didn't want to speak to me any more, for whatever reason, I wouldn't have a choice but to not call them any more.

I've been doing this for almost a year now, and it has happened a couple of times. You can't take it personally - one of the clients said after only a couple of calls that she would prefer to speak to a woman. Reasons can be that fickle. For the mst part, however, you build a relationship with somebody which, like any relationship, grows over time.

I had a first today. One of my clients I've only spoken to intermittently for the last few months. I knew she was ill, and at one stage she told me she'd had a spell in hospital. Today I phoned and was told by her husband that she'd died last week. I mean, I was very shocked. Perhaps I shouldn't have been - the work is by definition with the elderly, this lady was in her nineties, plus I'd known she'd been unwell.

But I'm afraid I did find it quite shocking. I remember saying how sorry I was to hear that. I used to really enjoy speaking to the client and told the husband so. But it is only really now, after the news has had a few hours to sink in, that there was other stuff I could and should have said. The obvious thing should have been to ask the husband how he was holding up. I mean, he must be a similar age, I suppose, and they had probably been married for many years.

I did at least tell the Age UK woman all about this, so hopefully she will have had the presence of mind to call the guy at some point, but I know only too well how stretched the charities are. At the very least I must learn from this.

Lost for Words

I might have talked of this in the past. Way back in the years before the stroke I used to love going over to France and just soaking up the atmosphere. I loved the culture, the language...

Since the stroke I have very much gone into my shell. Of course, travelling there now presents new problems, and certainly, in the early days, my wife was very keen on not going abroad, in case anything happened to me whilst we were over there.

I've come out of my shell again somewhat, in the time since the stroke. Social Media is great for allowing people to keep in touch with each other, remotely. I started off by joining a group of French ex-pats living in London. They talk about "London" and "British" things, which I know only too well, but they talk in French. I've kind-of expanded to follow some groups based in the geographic areas that I know best - Normandy and Brittany. Obviously these groups are based in France so are, by definition, French-language.

I do have a fair grasp of the French language, but I'm not perfect. I have French friends who are professors of English, who will readily correct everything I say (if I ask them)! But it occurs to me that one of the effects of stroke must be pretty similar. Certainly sometimes, there is something I wish to say in French. I can say it in English but I am constrained to say it in French, and I don't know how to do that. So I try to think of another combination of different words, which has the same approximate meaning. If I'm on the ball, I can think of such a formula - it is like a key turning in a lock. Otherwise, I have to resign myself to not saying anything, very frustrating, because I just don't have the words.

The reason I mention stroke is because one of the possible effects is on speech, and is called aphasia. Aphasia is a very over-arching term. If you think about the process, something comes in, gets detected and processed by the brain, which then formulates a response and sends it out via the muth. Aphasia is a loose term covering all the parts of this process. I've seen this most regularly in that very last step - getting the mouth to say the desired thing - but that is just my personal experience. Despite the words not coming out, there is perfect comprehension. I was lucky - I have experienced a slowdown, but in my best Spinal Tap analogy, I have gone from 100% to 99%. I would be impressed if you could notice it, most of the time, even my wife can't, although I know I'm not as quick, certainly, as before. It is just finding the correct word - although there are many words to choose from, there is normally one one which evokes exactly the right meaning - must be very frustrating when you can't, to the point of just giving up. I saw that in my dad, who had dementia, although, unfortunately I wasn't switched-on enough to recognise it at the time.

I don't know. A lot of the time we struggle to describe the effects of stroke to people who have no experience of what it's like. I mean, that's got to be a good thing, right? That most people can go through life without that experience? But maybe if you ever tried to learn a foreign language, this gives an idea?

Sunday, 2 June 2019

Costing Projects

Oftentimes in my career, I've been asked to produce project plans. I have a few simple rules I worked by, but they were not rocket science and I usually just ground them out.

By grinding them out, it was basically sitting down and working out, as best I could, all the different little tasks which went into the whole project, and, as best I could guess, the duration of each task. From there, just basically adding up the numbers together. The end goal was to be able to say how many man-years of effort would be required. I let other people juggle with the number of people involved, and, frankly, a lot of the time it really was no more than juggling!

A lot of tasks were repeated across the board. For example, every task finished with a unit test, so "unit test" was always a sub-task. A unit test is simply testing the part in isolation. But again, unless you realised this and took account of it, you wouldn't allocate enough time for it.

I had a basic rule that a task would take a minimum of half a day. Sometimes a task might be a single change to a single line of code, so a half-day was overkill. But over the course of the project, it averaged itself out. Conversely, if I costed a task at more than a fortnight, I knew I needed to break that task down into smaller parts to get a better idea. Overall, there were normally the same feelings on each project - when you first worked out the numbers, you, and other people, would say "crikey, will it really take that long???" because the number you calculated would always exceed your gut feel. But at the end of a project, I was generally happy with my initial estimates, although requirements invariably changed during the course of the project, par for the course.  After all, because the duration of an entire project was just the sum of these small tasks, for each task if would have been very difficult to miscalculate by all that much. So, unless you hadn't thought of all the tasks... Project Managers would often be not happy at the end result, but that was their problem - ultimately tweaking the numbers at this point would just have been wishful thinking - they'd have the math right there in front of them, so it'd take a degree of bravery (foolhardiness) to ignore it in favour of their gut. But some of them did, and they invariably got burned. If my advice had been wrong I'd have been concerned, but if they'd chosen to ignore my advice and subsequently got it wrong, that was their problem.

In my last few years, I met another guy who claimed he could estimate the cost of projects without grinding things out as I did. Quite funny, really, I'd regularly meet people in my career who could do things more efficiently than I could. For some reason, I survived despite being so inefficient. This guy just used his gut feeling. The difference, as always, is the working out - the documentation. My detail would be used as the basis of the plan that would span the entire project, the final number that I produced was just the headline. I was fortunate, I suppose, because I encountered this behaviour early on in my career and developed coping strategies - the guy, often parachuted in, who tells you. ever so nicely, that what you've been doing is crap, so you just had to cover your backside.