Category: Salisbury Stroke Support Group

Fandango’s Friday Flashback – 27 September 2019

Well, it is Friday lunchtime once again, and I’ve had quite a productive morning. Diem, my Diabetes web site – in nearing completion. But more on that later…

I saw in my Inbox a notification from my WordPress friend Fandango. Every Friday, he posts a “Flashback” post, something that he posted on this day in a previous year. The intention is just to give the reader an idea of what he was up to back then.

So, I follow suit. Rather than just reblogging my old post, I wanted to provide a short commentary, complete with links and formatting, and I haven’t worked out if I can do that yet with WordPress’s “reblog” button.

Earlier on in my recovery, I used to be involved with other stroke survivors in a peer support group. It was a very informal affair – we met in a certain coffee shop at a certain time, and just caught up with each other for a few hours.

Peer support is a big deal. When you first come out of hospital, you can’t be bothered with things like computers and you don’t have the strength to get out, so you just sit there in the chair all day, thinking “I’m the only guy who ever went through this”. And you gradually get your head straight enough to use a computer, and your body strong enough to leave the house, and lo-and-behold you realise you’re not alone. That other people have gone before you.

That’s why peer support is a big deal. You’re meeting people precisely because they’ve had the same experience as you.

Our group was very laissez-faire. You either turned up, or you didn’t. I was somebody who did turn up because I think it is important to be consistent. But this state of affairs meant that several times, I turned up on my own. Even getting to this coffee shop was a five-hour roundtrip for me, and if I was going to spend that time sitting on my own… well, I can think of better things to do.

I don’t want to re-gurgitate the original post in my commentary. Plus, there are other posts in the blog which tell more of the story (same category), if anybody is interested. Suffice it to say that I stopped going a year ago. The group presumably folded. I have the contact details of a couple of the guys who went occasionally, but I’m not really in contact. Sad, but people move on. They moved on. I moved on.

The “better thing I could be doing” is developing my own software, which brings me full circle. With one product released, and another almost there, I guess you could say it has worked out okay. And, I still meet with other stroke survivors, by virtue of the charity work I do at the hospital. If one of them sees me, and thinks “I’m not the only guy…”, then it is worthwhile.

With all this in mind, I hope you enjoy the post.

https://strokesurvivor.me.uk/2018/09/27/end-of-an-era/

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?

End of an era

Well, not quite, but I’ve decided to place some other commitments over my Wednesday afternoon peer support group, Salisbury Stroke Support Group. In truth, the attendances have not been brilliant for a while, and yesterday I turned up and was on my own (again). I actually took my wife with me yesterday, so strictly speaking, I wasn’t on my own, I just mean that no-one else turned up. And, at least I got a lift home afterwards, so I didn’t have to hang around for the bus. But the two of us spent half an hour just chatting to each other, something we could easily have done at home any day of the week.

It’s good, I suppose, that people feel they have recovered to the point where they don’t think it is useful to come along to the group any more, but at the same time a little sad. Moreso really because I think of it all as a bunch of mates getting together rather than just peer support. And, of course, there is the perennial question, “what if someone new needs support.?” There are precious few avenues as it is, and we’ve just closed off one of them.

Certainly, whilst I’m not working, I had a very straightforward view that I had nothing better to do than to go into Salisbury every couple of weeks, so I was happy to go along. By that I mean that there was always other stuff to do, but generally these days I don’t have to be in a certain place at a certain time, so I was happy to go to the group. But, really, if I’m going to go along – leaving the house at midday and not getting back until 5pm – and sit there on my own, there are far better things that I can be getting on with. I may even end up going into Salisbury anyway, but at least I won’t be constrained by meeting times.

Happy Lunch

I had a lovely experience when I visited to Salisbury today. The local bus service is sufficiently infrequent that I frequently end up with having time on my hands before meeting people. Today, I was meeting my stroke buddies for coffee, and had time to eat some lunch beforehand.

So I was sitting there by the side of the river eating my sandwich in the spring/summer sun, and heard both French and Flemish being spoken by passers-by. I mean, fine, I live near a city which is renowned for visitors, but just to be able to sit there and hear other languages was brilliant. It does upset me a little that some of my countrymen don’t share this view.

Coffee 25-Apr-2018

Gosh, almost all of us turned up today for coffee today, braving heavy showers to get to the Salisbury Playhouse. Here we all are:

Salisbury Stroke Support Group (3)

So yesterday I finally put this page “live”. We’re at: http://salisburystrokesupport.org.uk

The only whiff of complication here is that I wrote a date generator, just so we can say firmly “our next meeting is on 1st January”, or whatever. If we just said “every fortnight” then we’d be forcing someone, even after they found our page, to contact us to find exact dates. The page had been sitting there for about a month, fully developed, and I finally got some feedback I was waiting for. Although the page was sitting there ready to go, there were two last-minute developments:

  1. I spoke to a representative from the Stroke Association. All of the group had thought it more professional to use their Salisbury office (which is unmanned but which has an answer machine), as opposed to an individual, as the main point of contact.The Stroke Association originally seemed quite “up” for that, but on Wednesday, they said they weren’t. It sounds to me like there’s been some steer that they want nothing to do with us. But that doesn’t really matter, as the group has always functioned as a standalone group, at least since I’ve been going there. It does have implications, because the Stroke Association originally offered to get some flyers printed up for us, but the decision to say we’re a totally separate entity means that the offer has evaporated. So of course, saying this saves them the cost of those leaflets – which of course might well be the driver in the first place. But I’m clear on what this original offer meant – getting a few hundred leaflets printed up costs around £25 (I looked yesterday). So we were never being promised the earth, exactly. Of course, they might have seen these flyers as the thin end of the wedge… Anyway, I’ve just used my own name and number instead.
  2. On the web site I had used the same font as the Stroke Association, basically because it associated us with each other. People would see their leaflets up at the hospital, see our leaflets, and make a link. I’d tried a few times to locate the origin of the font, with limited success. Yesterday, I happened to come across some copyright information for the font. It pointed to a London design agency, which sells……fonts! Again, I couldn’t find the font i wanted to use on their web site, but there were other fonts on there which they wanted to charge several hundred pounds for people to use. There was a vague “if you’re a charity, call us” but I judged that, whatever the cost, it was unlikely to be zero. In any case, we’re a peer support group, with no formal arrangement between us. And from my perspective, I really didn’t even want to spend even a penny, so instead I used an Adobe font (which I am licensed to do, by virtue of owning a license for one of their other products). Last minute change, therefore. As a bonus, this new font seems a bit crispier and smoother. It’s still quite “scripty”, which I think is informal, but possibly easier to read? You be the judge:

Old font:

 New font:

    Faux Pas

    Hahaha, sometimes I think my choice of words could be better.

    I’ve blogged previously about my involvement with a peer support group, and I’ve just started a group on Facebook so we can all keep in touch between meetings. Because the group only meets fortnightly I think in terms of “on-weeks” and “off-weeks”.

    Anyway, because this Facebook group now contains people who don’t come along to the Playhouse every single time, I posted this morning that there was no meeting tomorrow because we were in an off-week.

    I got an amusing reply from someone to say that they were having one too 😊

    Salisbury Stroke Support Group (2)

    So I’ve been thinking about how we can raise the profile of our peer support group. I was pleased that we agreed on a name and a poster, but I think they are just the start. Every time I visit the hospital stroke ward full to the brim, the statistics say that 80-90% of people survive their hospital stay, so where is everyone?

    Sure, people end up with all sorts of mobility issues which might prevent them coming into the centre of Salisbury. But not everybody, surely? Those of us who come along already obviously find ways to attend.

    So I guess the place to start in terms of raising awareness is in the field that I know. Bear in mind that in professional life, I used to be very handsomely paid in my jobs in IT. So things like creating a web site, for example, are a doddle. Plus, there are so many generators around these days, which mean the creation process is easier still.

    What I’d therefore be looking for as an early goal is that if someone sits in front of their computer and types in “Salisbury stroke”, for example, then they should get a link returned which highlights us and what we do. So we can hopefully minimise ignorance as a reason for not attending.

    So, the obvious thing is to have some kind of web site. It doesn’t need to do a lot, I mean clearly we’re a very small group with very limited means. And again, I suppose traffic would be so low that that I doubt we’d ever top the list. But again, I have some expertise in that area so maybe I could contribute?

    I mean, there are other ways in which to use the available technology, lots of which are in place already. I’m a user of Facebook (I don’t know if everyone else is, but certainly a few of us have become friends with each other) so maybe we could create a group so we could keep in touch with each other online a bit more visibly? So, at least is someone did a search on Facebook, they’d find out that we existed. Plus, of course, other social media sites are available.

    I mean, the only thing really is that I suppose most of the responsibility for actually doing all of this would come back to me. But it’s not as if I’m pressed for time at the moment.

    I suppose, though, being a very consensual person, I have to put my money where my mouth is and make sure that everybody is happy with the idea. No point jumping the gun – we don’t want to end up with fewer members because of this! The last thing I want to be is the newcomer who wants to take things over.