Disagree

[Gnasher]

Some people will disagree with my comments I put on but that’s for them. But if someone puts something on the forum they are asking about how they are. Not how we are. Yes we may have had the same type of stroke but we act in different ways to it. So they are asking about themselves not us. Am I right. I’ve in the past put on a question about how I’m coping and have had some lovely replies.

And then some that make no sense at all to the question. No point saying you should try this type of drink or this vitamin. Why because you don’t know me and my Dr and consultant have said run it past us before you try anything.

This forum is great in lots of ways. It’s helpful. It’s reassuring and friendly. But some people think to much of themselves and it comes through that way. And yes should be challenged in my book.

[Rups]

I think the heat is getting to you @Gnasher , I am of course being a wind up. I appreciate your point but asking stroke survivors to manage their engagement is a bit like herding cats. I’ve been on this forum for six years, pretty much, joined a month after my stroke in 2020, and I’ve witnessed many a disgruntled member tackle the flow and form of the forum, some jumping ship and creating their own forums or alternative social groups, taking other members with them. The forum does have guidelines for posting, the one that comes closest to your point is called hijacking a thread, where members go completely off-topic, and it has to be said that I, myself, have been guilty of doing this, especially when I get carried away with banter. We should be challenging others, courteously of course, as well as supporting them, that’s part of the rules of engagement.

I have to come back to my view, but still on-topic, that this forum means different things to different people, some people find it cathartic to mirror what they feel about someone else’s post with their own experience, some may read a post and respond to a different aspect of it, not necessarily directly related to the main statement or question, but we all read into things differently, I guess. Also, we are posting with our own set of brain challenges, and damaged brains can be a bit off the wall at times, for instance, I have limited impulse control, so if I think to express something, it just comes out. This happens whether I am speaking face-to-face with people or writing on a space like this. Others will have their own reasoning behind what they are inputting, and in their mind it might very well make sense to the thread they are responding to, perhaps not to others, but that is a fairly natural consequence of personal interpretation. I think it is also worthwhile considering that there are many people reading the threads who don’t reply to anything, just read, and they will get their own takeaways from the conversation.

Anyway, just some thoughts on the matter. It is true that we are not medical experts or doctors, but I was misdiagnosed by a doctor while having strokes over three months. The doctor was convinced I had BPPV, and basically dismissed my concerns and left me with four strokes to manage for the rest of my life. Had I come across my own writing on this forum, as this forum is searchable, generally, on search engines, I might have had a stronger case for getting a second opinion with that GP, so I see the forum as; a resource, an outlet of expression, an interesting and entertaining read, a way to engage with others in the same boat (no matter the subject), a means not to feel alone, a place to vent, a space to share sad times and good times, a means of sharing experience and information, and a space to have disagreements too.

This is the only social networking platform I choose to have. Not on any of the others, so it is a bit of a virtual home away from home.

[Dexster]

What is BPPV please?

[Rups]

BPPV is Benign paroxysmal positional vertigo, but most people, including some GPs just call it vertigo. It’s when the little calcium crystals in the inner ear shift and they either need to be corrected or usually correct themselves after a few weeks.

[MattJC]

Hello @Gnasher

I was and still is wary of people who has the answer, both stroke survivors and someone who cares.

Most of them are nice, caring and not provides the answer, just their experience which might help.

Hold on!

M

[EmeraldEyes]

@MattJC hit the nail on the head.
“We” are not qualified experts. That should really be a banner across the top of the home page​

We are however, the best experts in our own stroke experience, no one can deny that. And what we choose to share on here is purely voluntary and only based on our own experience.

Your posts are read by anyone and everyone throughout the world as this is a public forum. There’s no need to even join to read members posts. I for one, tend to bear that in mind whenever I reply to a post, so some of what I write may not necessarily apply to you personally but similar enough it might be useful to other readers of your post.

@Gnasher

But if someone puts something on the forum they are asking about how they are. Not how we are. Yes we may have had the same type of stroke but we act in different ways to it. So they are asking about themselves not us

And we all react differently too. The art of interpretation becomes a minefield on a platform like this. We all receive our posts and updates differently, depending on which device/method we use. Some people only reply through their emailed updates for instance. I prefer to log in to the forum and go directly to a post to read or refresh my memory before I reply.

Just navigating this forum can be extremely challenging for a stroke brain. Particularly for newbies, I remember it well even 5yrs on People can and do reply to wrong posts, misinterpret a post they read, can even make replies that make that make no sense at all. One day a post can get my back up and the next day I read it differently and wonder what my issue with it was. I know because I’ve read a few of my old ones and wondered what the heck I was talking about My main issue was Aphasia and I still have, though not as bad. So while I’m here I’ll just shout out a big THANK YOU to all who I baffled and confused with my gibberish over those early years and since​ Thank you all for your kindness, patience and tolerance And to any spelling and grammer police out…

Some will have absolutely no clue how or where to create a post of their own, they haven’t yet the mental capacity to hunt down the user manual (if you know where to look​) or the rules and regulations, the does and don’ts. Many have never used any sort of social media platform before. Its all alien to them. It might be that family or a friend set them up and left them to it, so they’ll have no clue to public platform protocols. And they have to be admired and applauded for what they have achieved to get on here and post something. That takes an awful lot of brain power to achieve with a stroke brain.

They’ve had their stroke and are desperately seeking answers to what they are experiencing in the only way they’ve managed to fathom out. They probably aren’t even aware they’ve hijacked someone else’s post. How they get it, where they get it doesn’t matter and it shouldn’t matter you or I.

You have to allow for all of the above, because their brain is broken, just like yours, just not necessarily in the same areas as yours was.

Lorraine

@Gnasher

But some people think to much of themselves and it comes through that way. And yes should be challenged in my book.

Why? What’s there to challenge. How someone across to you in black and white on an anonymous platform like this is surely your own interpretation of person. Or has someone actually claimed to be a qualified expert in a field? In which case maybe you should speak with admin @Anna_Moderator

Lorraine

[Rups]

@EmeraldEyes

And to any spelling and grammer police out…

It’s grammar … or did you do that on purpose?

Thorough post there @EmeraldEyes.

I might add that because so many of us are at different stages of rehabilitation, so responses change as contributors change, depending on their condition. At first, I was a babes in the woods, but after almost six years I’ve grown with my condition and certainly respond differently, trying to pepper threads with what knowledge or ideas I have gathered along the way. It has never been intended as medical advice, but there are some things, particularly with cerebellar stroke that I feel are medically apt and worthwhile sharing and discussing at any stage of rehabilitation.

[EmeraldEyes]

@Rups

It’s grammar … or did you do that on purpose?

The whole incomplete sentence was intentional, forgetting that we are in the Lounge where there are no s&g police anyway . . . I hope​

Lorraine

[Rups]

That’s what you think …

The grammar and spelling police are everywhere.