Welcome - what we wish we'd heard at the start

Yes indeed there is .

I was waiting a day or two for people to make contributions and to gauge its reception before reaching out either too @Mahoney or @Mrs5K

(all the other people who we should be able to look for TL4 care have been awol for a very long time :-(. )

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Good luck with the move Andy.

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I thought you might like to read this inspiring piece from @Mahoney

https://forum.mystrokeguide.com/t/a-letter-of-encouragement-to-my-newly-stroked-self/34264?u=bobbi

Keep on keepin’ on
:writing_hand: :smiley: :+1:

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100% agree.
T’would be good to link to other standout inspiring posts too - a sort of library of places to read from the collected posts on the forum.

Bobbi, would you like to make this post a wiki so we can add other creme de la creme into it? Or we can just post other links below? If you made it wiki we could put a link to this post in the OP (opening post of this thread) as a consolidating signpost :slight_smile:

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I would try to avoid swamping newly stroked individuals with large quantities of data.

"What time is it? When do I get my next cup of tea?"
is quite enough to process in those early days.

So go gently with them, we are not trying for an honours degree in stroke just yet.

If you can get them to read a bit on the forum you will be doing well.
Like feeding the cat, a little and often.

but,
Keep on keepin’ on
:writing_hand: :smiley: :+1:

its only words
amusing, optimistic, sympathetic, unafraid,

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Just to add to some of the comments, if you are looking for videos you’ll find them on our YouTube channel or in the content area of My Stroke Guide here Video library | My Stroke Guide.
If you find a post interesting and want to get back to it use the bookmark feature as @SimonInEdinburgh suggested. You can then find all your bookmarked posts by clicking on your profile picture in the top right corner and on the bookmark icon in the menu that appears. If you get stuck you can click on the “Help using the site” button at the top.

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I don’t know if you like this idea. Shoot it down if you think it is stupid or no good.

Maybe at the head of the Forum there should be a new category aimed specifically at those who are just arriving here.

A title like:

New to the My Stroke Guide Forum?

Content aimed at those recently affected by stroke

I think the material should be an accessible, short, easy read.
Maybe with basic instruction on how to post.
In small bites to encourage returning for a little more.
Served with gentle humour.
A place to find sympathy and understanding.

I’m going to stop here .
Newly stroked people are fragile, they don’t need to feel there are huge mountains to climb.

That can come later.

Keep on keepin’ on
:writing_hand: :smiley: :+1:

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I noticed its hard to move on when you have setbacks

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Well a certain amount of that - like it should be short is in the guidance thinking post that I wrote before I put this up so I agree with that.

I’m inclined not to feel something official plays to the strengths of our forum

I think for now simply pinning this thread and seeing how it develops is the way to go at present a review sometime later might be appropriate

My vision with this was that WE We we not admin would create something that was the aggregate of OUR experiences.

The connection and value of this community is in the individuals plural who are the inhabitants not anyone individual and definitely definitely not admin. admin do not understand our stroke life the way we do. Nor do the medical professionals.

Also as a wiki post everybody can contribute People have involvement & if they want to stick there name at the end recognition. Who’s going to decide what an admin post includes and how are they going to have more empathetic or knowledgeable input than the whole of us?

The forum already has a "Welcome to the My Stroke Guide forum.
However long you’ve been living with stroke, our online community is here to support you day and night. You can talk about things that are important to you, share your tips, ask questions and learn how other people are managing their recoveries. Join a community of thousands affected by stroke.

Scroll down to view the categories and …"

It’s been there for ages. Even if it was revised with the later with a month ago or so - It doesn’t do what a community written wiki post does.

This community wiki could be given a new category but we’ve got categories for general community already isn’t that appropriate?

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Yes the stroke association has videos. I have suggested any that people think ate stand-out should be referenced but we’re not trying to replace the stroke association YouTube channel or even index it

No they aren’t serving the same purposes that people like Elise and Tara are. No they aren’t covering the breadth that the internet does and then gets to confusing for people to find anything and yes we as a community trawling through find the nuggets

Andy @TRFCANDY53 has messaged me he’ll put a wiki post together when the chaos of boxes subsides and the rest of us can contribute our favourites to

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@SimonInEdinburgh i like the idea & it does save everyone putting the same thing. I imagine though people would still like to say hi to people & it’d still be nice to read their stories.

My main thought though is that a lot may find it quite a lengthy read. I know i couldn’t of read all that info when i first joined & i still struggle now. If it was in smaller chunks it may be easier?

Just a few ramblings from me but as i said i do like the idea.

I’m not 100% sure but to pin it it would need to be in a post on its own…i.e. without all the other comments too. I can only find an option to pin the topic not your first post. I may be missing something of course.

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Way back in the beginning, those first weeks/few months after my stroke, it was a monumental task to search the internet for a place like this. Just the struggle to key in two small words “stroke” and “forum” into the search bar was exhausting, draining and took many failed attempts, but I got there eventually. The time it took to key in those two words could be measured in minutes because I was battling against memory and the lack of, brain fog, confusion, aphasia and fatigue. Every search attempt was like ground hog day! So you really only have precious minutes at a time to at least find a suitable site to leave up on screen to come back to when you’ve recovered from your exhaustion and the brain squeeze.

This site came up time and again at the top of the search result and every time I managed to click on it I could never fathom out what it was about and wind up in tears of frustration…every single time, 'til I’d scream. So time and time again I gave up in exhaustion and forget, 'til the next time.

I would have recognised this forum if it was as it is now though. And if that document above were the first I saw, I would have known in a heartbeat I’d found the holy grail, that I was finally in the right place, with real people who knew what I was going through, experienced similar themselves.

I wouldn’t have been able to read the whole document, but just skimming through it would have told me enough to know it was worth the perseverance to read through over time in small increments. And even though I didn’t have the wherewithal to sign myself up to the forum, I could at least read…somewhat, at least enough to find what I needed to know . . . that what I was experiencing was normal and things could get better! :slightly_smiling_face:

One thing I wouldn’t have done is click on any links, because chances were I wouldn’t have known how to get myself back again. So I’d have left them 'til later in my recovery.

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I’ve just broken up a few paragraphs into smaller chunks, do you think that helps it any? I’ve said the same regarding the length, but at least I could have skimmed through as did with a lot back then, but at least that would have been enough to of a help to come back to.

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@EmeraldEyes Yes i think that has helped a bit. I’ve also made a couple little changes & added something to one of the bullet points.

I agree witb your comment re links. Initially i probably wouldn’t have clicked on any. For me that would be a trust thing though. More about not knowing hiw the forum worked & where the links were taking me too. Once i had found my feet on the forum & built that trust I might go back to them.

@SimonInEdinburgh a great idea that with some team work is shaping up nicely. Thank you for taking the time to put it together.

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Yes @Mrs5K we need a bit of a team effort and time to mellow ideas and rough edges and allow contributions, but yes it does have a prospect of becoming something . We shouldn’t rush :slight_smile:

We all agree about length.

There are challenges or tensions between saying what needs to be heard and making it manageable to take in.
We face the same challenge that mobile phone makers have: on day one everything’s alien and on day 100 you want swift shortcut access.
I don’t think aiming at the lowest common denominator is correct, I think somewhere middling but we will :slight_smile:

One mechanism I have proposed for length is to link to subsequent wiki posts - like one Andy will start a useful YouTubes and possibly other resources wiki post. I suggested that Bobby might like to put one together of stand-out posts in the forum. If he doesn’t want to start it I’m sure somebody else will take up the reins. Im also of a mind that a simple how-to-use the forum from a user experience user interface UI/UX angle is necessary. E g addressing emerald eyes concern about links and being able to return is I think common and should have a paragraph but not in this top level wiki-post

The thread issue you raised above is no issue. With the split merge feature we can tidy the thread up after people have debated and contributed. I had actually created another thread where I expected all this discussion. It can be moved to end up there up even if it hasn’t start there - by splitting merging the posts to the other thread

I also issued a plea in the guidance thoughts to not delete text without first debating it in the other thread. That appears to have slightly fallen on deaf ears - but again it’s easily addressable. In there I had also raised the point you made that welcoming folk was still a very necessary personalised action but some folk like clibbers have read 2000 posts before they make their first one! And everybody whether personally welcomed or not could do with a consolidated message - so the aim should not be to replace the welcome It should be to supplement it with some considered team perspective on what would be useful to know

We should perhaps leave it a week while it matures and maybe it’s a month.

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Hi @Bobbi, I think it’s a good idea. We do have the ability to direct new signups to a specific category to help them onboard and the platform (Discourse) has its own onboarding prompts for creating new posts and navigating the site. Some of you may not have experienced that part of it as you may have been put in a higher trust group having come over from the previous platform.
We would normally direct people to the About the Forum category first as well as the rules of the community to foster good conversations.
I can see the need for the category for those recently affected by stroke but we’ll have carers and other people joining who may have had their stroke a while ago. This means we have to get better designing those journeys based on personal need. A lot of that work is already going on across the organisation so this is helpful.

Also agree for the need not to overwhelm people with lots of information and to break it up into bitesize chunks. @AshleyTH and @CommunityAdmin have done a lot of work with onboarding videos and self-help articles in that respect.

Thanks for all your contributions.

Clement :pray:

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I recall when the prior version of this forum was substituted for this one, there was much disquiet concerning the felt complexity of it. Quite a few regular contributors dropped off, but then others joined in and it is what we have today. Although, I was brain battered and foggy, I would have appreciated a wiki post as @SimonInEdinburgh has put forward, others who can’t digest such information will bypass it for individual responses to their concerns.

Not to digress this topic, but I have been muddling an idea in my sabotaged cerebral centre that might inspire some of our more vigorous stroke scribes, concerning putting together a self-published book of stroke stories that not only expresses individual experiences of stroke but includes collective wisdom and knowledge on stroke recovery. I will post something in the lounge this weekend, at the moment I have just moved my pigs to a new field and have some mortar work to do in order to secure a large steel gate. It is taking up a lot of my energy at the moment.

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What a brilliant and informative post! I was discharged in early Feb from Bolton stroke unit and this is the first really positive post I have read on here. Co incidentally my physio, Nicola, told me this morning about the “first six months” recovery but went on to say that it’s as much about the body not being strong enough to do the things we would like to do rather than, as a result of the stroke, not being able to do the things we want to do. If we identify the weakened muscle groups and work towards strengthening them we will have a more positive outcome. Many thanks, keep up the positive posts, @SimonInEdinburgh, @EmeraldEyes and @Mrs5k

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@Rups I applaud your idea of producing something. I’ve seen two or three initiatives that have gone down this route with varying degrees of success because of different strengths and weaknesses.

I too have been thinking not on the same lines but something on upper limb rehab that was sourced in the same vein as this wiki post. I think when you say self-published if it’s on paper between covers there’s all sorts of logistic problems. When it’s any of the formats like Amazon Kindle which is easily self-published there are again challenges but less so. I certainly welcome the opportunity to discuss it more .

I don’t think that posting in the lounge is such a good idea though . There are 49 of us that have access to the lounge, there are 220 people in the level below and 26,000 who have done enough to be granted basic access. Of those 49 we must be active because you lose it if you’re not active. of the 220 there can be those who aren’t active and of the 26,000 that will be many who have never been particularly active. I can see one reason by the 49 Iraq attractive because they’re active but they may well be many people who would embrace doing something in another medium who don’t embrace the forum as actively

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The more literature out there about stroke, the better. I will first mull the idea over in the lounge with the more verbose of us, simply to get some feedback first. Later contributions can be called for openly in the main part of the forum. My hope is to have something that might find its way onto stroke wards and, perhaps, be read by professionals to broaden their understanding from a patient’s perspective.

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