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

General Community
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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

2¢

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40

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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My early days were not easy, I wanted more than I could achieve, but was this a bad thing?
What could have been available, necessary, at the start of my journey as a newly stroked individual?

I’ve thrown together the following list in an attempt to answer these questions.
I share this, my humble offering, in the hope that it will be useful.

A few suggestions of what might be needed

information very simply presented kindergarten level in very small quantities
telling what to expect, the ups and downs in broad terms

human contact, company
reassurance, interaction and exchange with others in the same situation

the knowledge of not being alone
sharing with the experience of others

encouragement
ways to make small advances, looking for small successes

addressing the restrictions stroke brings
getting help in the many ways possible

how to be happy, setting goals
how to deal with difficulty

recognising the need, the necessity to withdraw, not take part,
to simply to rest and recover

help dealing with friends, family, workmates those around also affected
explanations, how changes will happen

sharing the experience and the opportunity to do so

amusement, entertainment, distraction, games

I suppose the first thing required should be a powerful magic wand that would pack all this away and put things back to the way they were.

Fat chance,
so until that occurs I’ll just . . .

Keep on keepin’ on
(you could do the same)
:writing_hand: :grinning: :+1:

In case you are wondering about some of the slick formatting I have been using in recent posts, the following link will tell you more, (it works on this forum):
markdown reference guide

Have fun !!

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@bobbi
Have you seen the list from Jill Bolte tailor? It’s the appendix from her book stroke of insight

Have we previously had a useful book thread? Should we have a book review wiki-post? I remember a thread on books but it wasnt about useful stroke books it was just what I’m reading now and would recommend so romance and novels etc

I use as a ref for formatting this from Jeff Atwood (discourses main author).

We should maybe explore bbc & the valid HTML subset :slight_smile: ? There are things described as supported like font size that I haven’t been able to make work yet - maybe you can work out what the trick is? Maybe MSG doesn’t have the options loaded??

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@SimonInEdinburgh I very much doubt I will be studying any books about stroke, probably won’t be doing study of any kind at this stage, if ever.

Stroke is a very day to day experience for me. The study and in depth stuff I will leave to those who feel there is something there for them.

I’m sorry to be so trivial and lacking in seriousness, but that is where I find myself.

May your enterprise fair well . . .

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

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Gosh don’t apologise or characterise as trivial.

I fully appreciate that making a cup of tea can be harder than climbing Everest and should receive a bigger accolade for the individual who is challenged the most.

I observe you frequently go well beyond the cup of tea. More power to your elbow :slight_smile:

I quite understand the “ain’t going to read a book”. I have read one since my traumatic event. I’ve read a few papers which are shorter although probably denser.
I wasn’t saying “would you like to curate a list of books”. Although I wouldn’t have stopped you! :slight_smile: somebody on here may wish to take that on. By sharing the activities out we produce the most.

I hope you have a good day
Ciao
Simon

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@SimonInEdinburgh
btw something has happened to the title of this thread. I’d correct it, but don’t have access.

Aah, I see it is now fixed.

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

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Thnx @Bobbi
Updated
:slight_smile:

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good luck with it all. we are in a bungalow before had stroke

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Exactly…very important point!

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Reading this post was so enlightening. Moral here KEEP GOING don’t give up.

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Yes, that point about grieving for your pre-stroke life and self is so important- but it’s so hard, almost unbearable until you come to accept the idea. I have only coped with this as I have wonderful people around me who understand, and are not frightened of talking about it this way. Having a stroke is a huge trauma which affects your whole family and network, and it is like a death, in a way.:unamused:

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Thank you for the post. My Mum is 6 days post stroke and still in a high dependency unit. I am determined to educate myself so I can help her in her recovery as much as possible. We lost my Nan to stroke 21 yrs ago but it was a certainly a very different approach then.

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Hey Bobbi, I’ve just taken a look at that markdown reference guide and I wonder if you’d know this about the Horizontal rule. Whenever I try to use it I can’t actually see even though I know it’s there. It will show up under highlight or if I change my screen setting to Dark mode…which I don’t like at all :roll_eyes: My son said something hr tags and started to lose me :sweat_smile: Half my trouble is that I don’t have the lingo for tech speak :woozy_face:

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As the “Welcome to the My Stroke Guide Forum” goes how about an introductory email to new stroke victims and their caregivers with a link to the Forum Archive?

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Yes I agree I’ve private messaged you…

@KGB

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Just found this! What a brilliant idea so helpful.

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And the Thursday cafe will be running today if you wish to come along or anybody else wishes to come along

I probably won’t make it as Lea and I are away in the lakes for our 40th anniversary :slight_smile:

Ciao

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