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

Hello - You are no longer alone :hugs:

Several of us collaborated to put this together

<-- click the triangle for a warmer welcome

Hello and welcome to the best club in town that doesn’t have a waiting list and nobody would qualify from choice!

(This post is a wiki-before editing please read >>>here<<< )

Now you’re here know that you have landed in a good place as a #StrokeWarriors.

StrokeWarrior

Recently some of raised concern ‘warrior’ isn’t a good word - if somebody can find a better word let’s use it :slight_smile:

You’ll find the crew here empathetic, patient and knowledgeable with understanding in a visceral sort of way that only a community of people with lived experience can truly understand. We’re all either survivors or are carers who battle everyday. Stroke gives everybody involved a new life path. All #StrokeWarriors should take support wherever and whenever they can find it .

We’ve put together in this one handy place the top things we wished had been said to us initially. Of course this doesn’t answer everything; that is where our community adds so much :slight_smile:

As a community forum this is a great place to:

  • ask questions - because we’ve normally got several answers, all are relevant alternative perspectives that share the broad experience of us all, gathered from the great variety that strokes journeys encompass.
  • It’s a great place to unburden yourself and or rant to a sympathetic ear.
  • It’s an excellent place to celebrate your achievements, to share your journey, to learn what you may expect by reading what feelings, challenges and achievements are actually happening in other folk’s journeys.

We ALL start frightened, overwhelmed & with anxiety

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Although your journey will be unique, you will share many factors and needs with many of the other contributors here. For example bewilderment, anger, anxiety, fatigue as well as the joy of progress and achievement of milestones over time.

Almost all of us have found the journey to be frightening at first and rarely straightforward, not a simple straight line but always one that over the long term is one of progress and improvement - even if in the short term gains are accompanied by setbacks.

3 Steps forward then two backwards

"There will be times you feel you are stuck in reverse...

…, two steps forward, one step back but that is just your brain taking time out to rest and process.
Much like in all physical training/body building, the brain is another muscle. You build up your muscle and stamina to certain level, then you need a period of rest for the muscle to grow and repair. So what you see as regression is the brain taking time to rest and process all that its learned.

We are much like babies with their under developed brains, but our brains were damaged/burnt out in parts and signals have to be remapped if they can, and we have to relearn certain things all over again. When babies first learn to walk, they too have frequent periods of regression, where they suddenly drop and crawl again.

Stroke survivors learning to walk again will bump and fall too, only we fall harder in adulthood, we may cry about it too…and we’ll learn that painful lesson :wink: Part of this learning is going to be about being extra careful when walking/moving around, confidence will grow as you grow stronger in your walking ability.

Please don’t let your natural feelings of fright and fear stand in the way of your recovery. You may feel at times as if you are buried beneath an avalanche of physical and emotional changes that seem impossible to deal with… You may even feel that there is nothing you can do to overcome what has happened to you. Try to put these feelings behind you and believe in your very real ability to fight these unwelcome changes.

Approach your recovery as a series of achievements. Every new achievement however small is a cause for celebration. Tell other people …your friends, your partner or carer about each improvement because that’s what everybody wants to hear.

Building post-stroke life starts the day after a stroke and progress never ends if you make the effort.

Typically it takes years. There's a good few myths to be busted...

… like “you only recover in the first 6 months” - that’s simplistic and wrong but commonly repeated by medical practitioners. As is "I couldn’t say because everyone’s different”. This community won’t be able to give you specifics but it can tell you what’s normal and what’s rare, suggest the interventions or searches that may give answers and progress.

Building capability (often based on goals) is a foundation to shaping of a rich life after stroke - one that can have elements that are better than your life before - even if there are also deficits - there’s a thread on this forum on that you will find with the 1st search suggested below.

Perhaps the most useful things you can do are

  1. start reading through other posts, they will answer many of your questions. The community runs on ‘likes’ - When you read a helpful post give it a like - the heart symbol below the post. A software monitors you’re reading topics and posts and importantly your giving and receiving of likes. It unlocks new facilities only if you do
  2. when you’re ready (now?) start a thread with your challenges and questions, perhaps share your stroke story - you’ll definitely receive an empathetic response
  3. learn how to use the magnifying glass above :mag: which is the search function and then try searches like “letter of encouragement”, or “anxiety” or … to refine your reading.
  4. Join the Thursday zoom calls - details in Online ‘cafe’ (also Carers)

Common topics amongst all of us are:

quality of our sleep and...

…resources dealing with how to improve it, debilitating effects of fatigue and compensatory strategies, returning to working, driving. Also family, relationships, dealing with agencies for benefits etc (PIP - personal independence payment - process is legendary, blue badges…) as well as experiences with healthcare services that don’t quite get what it’s actually like. Some of us have really excellent experiences and some of us don’t and most of us are in the middle.

Post stroke (or TIA) might reasonably be divided into the first 6 months and the rest of your life.

The first few months the body looks after clearing up oedema and necrotic brain tissue killed by the stroke...
  • During this time abilities that weren’t destroyed may come back. This is the basis for “recovery happens in the first 6 months”.

  • Also in this time unused tendons will be shortening along with the nerves and the muscles will be atrophying.

  • Brain chemistry will be adjusting - all these things will lead to a host of changes which are normally unexpected and often cause anxiety about “am I having another stroke” - a few trips to A&E are not unusual.

  • If you’re unlucky and most of us are, you’ll have fatigue.

  • If you’re dreadfully unlucky, and most of us aren’t, at about 4 months you’ll develop central post-stroke pain - we’ve threads on that too.

Neuroplasticity

From the time of your stroke onwards ...

neuroplasticity will be a potential. The brain will start rewiring around dead areas. The more work you put into encouraging thinking processes and limbs and speech and swallowing and balance and hand to eye coordination and visual perception et al, to operate the more progress you may see.

The only guarantee is that inaction results in no improvement - learnt non-use will occur if you don’t fight it - we are #StrokeWarriors. And be prepared for a lot of chipped and broken crockery along the way :stuck_out_tongue_winking_eye:

The F word: FATIGUE

For many months post stroke the energy used internally ...

…in repair maybe so great that fatigue is a constant and that to anybody looking at a survivor they will see them sleeping or sitting almost all the day. Carers need to be aware that there’s a great deal of energy being used even if it cannot be seen . Motivation may have gone because there isn’t energy for it.

Over time more visible engagement in exercise and the actions of daily living will be possible. They will sap energy from a greatly reduced battery and at much faster rate than pre-stroke, again this is fatigue. There are many threads here about keeping diaries to detect causes, good diet and many other strategies on this and many other topics.

What we think is some useful stuff

links to other topics

For a collection of the best threads on here: Click Here!

To install a direct access icon on a desktop with your browser click the browser menu button and scroll down to the "install My Stroke Guide” option
Nb add pic :frowning:

For instructions on how to download an app to view this forum on your phone or tablet: Click Here!

To find a local face to face support group from the hundreds of available: Click Here!

For weekly zoom chats every Thursday: Click Here!
or to explore Bobbi’s Zoom Open Group (ZOG): Click Here!

You can bookmark this thread by clicking the three dots below

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Then tapping the ribbon like icon

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3rd party agencies that may help

<-- Click the triangle to expand this section. Sources of help with coping

Citizens advice bureau

CAB offer great advice about benefits and navigating the welfare state as well as your legal rights and many other challenges has your family adjusts to post stroke challenges.
This is the link to the find in my postcode page on their website

Find your local Citizens Advice - Citizens Advice

Stroke association helpline

There is a wealth of information on the website but navigating it is often hard . The experts in what is there that may be relevant to you are on 0303 3033 100 or mailto:helpline@stroke.org.uk
Opening hours and details at:
I need stroke support and information | Stroke Association).

Return to work

Returning to work is a big topic! So we won’t cover it here. Employers have an obligation to make Reasonable Adjustments.
ACAS is a good third party agency from which to request advice
Contact us | Acas

Support groups

There are very many support groups around the world, and local to us all. They are run by many different organisations.

Here is a web page that will find face-to-face groups local to your postcode that are affiliated with the stroke association
Map of local support groups | Stroke Association

The more general page is Stroke support groups | Stroke Association

And a forum post that includes groups whether affiliated to the stroke association or not is Support Groups for Anne & anybody else 1of2

Unlocking more forum facilities - tap blue text

The Stroke Association Helpline by phone 0303 3033 100 or by email helpline@stroke.org.uk.

This thread has been put together by @SimonInEdinburgh, @EmeraldEyes, @strings, @Mrs5K and @Mahoney @KGB

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@SimonInEdinburgh What a great post, I have found this forum invaluable and so supportive. Welcome to everyone who joins.

Nigel

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Thanks @pinch
If you think the above can be improved then because I made it a wiki everybody can edit it so please do add because I am I’m quite good -I think / hope - at the factual but less good at the emotional

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This is a great idea, I did find the forum/site a bit of a jumble when I arrived and I’m still at the stage of not being able to find things I’ve already seen. I think a more logical and helpful welcome and setup is a wonderful step forward especially for newcomers ( which I still am) and the idea of bringing the wealth of knowledge and experience together in an easily searched format is brilliant. Well done Simon.

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Hi @Strings
While that dislocation of arriving here is fresh on your mind you make a great asset to add the clarity that would have helped you because for a great many of us - especially with post stroke short-term memory issues! - will have forgotten as our familiarity and fluency grew .

You’re now at the trust level where you can edit the above or you can spark a discussion in the other thread Wiki guidance thoughts for welcome topic

:slight_smile:

I still find this site difficult to find things that I’ve previously looked at & want to go back to! I now try and remember to leave the window open in the stack or back chaining of everything I’ve opened in the app. I never have discovered a strategy where I can see everybody when folk join and post. In fact I think that functionality is either missing or broken or thoroughly obfuscated %-)

There is such a wealth of knowledge in the back posts (and there’s also a governance question of it wasn’t collected it to be mined other than informally read by the participants - I suspect thats going to be an intriguing Gordian Knot or/ and a lost opportunity.

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This is absolutely brilliant Simon and applaud your effort :clap: :clap: :clap:
It’s just what this site needs and though I’ve often considered doing it, the constraints on time, memory, interruptions from thought, and the wherewithal to do it escape me…such is the life of stroke warriors :blush:

Well done and thank you for putting this together :people_hugging:

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Please feel free to extend I made it a wiki post which means everybody can edit - there is a version control system in the background as well -

There is more that I haven’t, probably couldn’t, say to make it more complete & welcoming so I hope that you and others will also add both content and your names at the end

:slight_smile:

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Great idea Simon, really valuable asset to this forum. Thank you for putting it together, I’m sure it will be really helpful and informative for the new stroke survivors joining us in the future.
Regards Sue

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I would have found this extremely helpful in my early days and even now at about 6 months in, i think. The information is why I came…The friendly atmosphere is why I have stayed. I no longer felt relevant in any way in this life, which caused depression. This group has helped me feel I am living again and have purpose. Helping someone new navigate so they can find information that will help them and learn the ways they can interact with others makes the site more promising in getting people to the different kinds of help they need. The camaraderie and open nature of discourse here is simply amazing from people who have mostly never met, whether a carer or the one with stroke history. Thank you for starting this!

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I do want to help in any way that I can but I’m going to have to look very carefully at this before I attempt to start editing an existing post.
When I first arrived here it was via a link emailed to me following a phone call from the Stroke Association. So I arrived not actually knowing what to expect or even why I had come apart from curiosity. What I found made me want to sign up and become a part of trying to help others with my limited but first hand experience of receiving a hefty clout from the hand of god. (I’m not religious by the way, I just googled why we call it a stroke and apparently many years ago all we club members would have been considered to have been struck down by the hand of god … sorry guys we must have all sinned a bit too much) So, anyway, back to the subject, I will do my best to comtribute but please be patient with me.

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The only edits I made were minor punctuation and layout but I’ll have more of a think about that first :wink:

I just wanted to break it up in a few places for either emphasis to points made and for ease of reading for those with Aphasia issues. Shorter and clearer paragraph definitions assist with reading abilities. They make it easier to break off from and come back to when you haven’t got enough concentration to read the whole article in one fell swoop :blush:

I hope its helped but switch it back if needs be :smile:

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Nice :slight_smile:
Add yr name too :slight_smile:

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Well, considering Lucifer was chucked out of heaven because he basically wanted equal rights for angels, maybe god has too high standards anyway. :stuck_out_tongue_winking_eye:

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Yes " It’s my way or the highway Luci" :rofl:

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@SimonInEdinburgh what a fantastic post.
My only suggestion would be to perhaps add links to some of the videos on Youtube from the likes of Elyse Newland. Giving newbies a chance to see the wealth of info that is freely available.

Acceptance was my biggest challenge initially, that its a long term recovery snd yes you can be left registered disabled and need a wheelchair to get around, that you might lose friends or family who dont get it…

Moving house tomorrow - to a bungalow as a result of my continuing mobility challenges, 15 months on.

But embracing the version 2 alongside grieving the pre stroke you yourself takes time and some decent size deep breaths and plenty of psychological support too. The importance of this cannot be underplayed, the mental side of stroke recovery is absolutely huge…

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I’ve added a short paragraph to the section about frigtht and setbacks. Just a few feelings from my own experiences. If you feel it isn’t useful I don’t mind if you change or remove it.

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@TRFCANDY53
Andy I think that’s a great idea.

Here’s a suggestion: why don’t you create a wiki with the topic of YouTube resources. Definitely include Elise and Tara and different strokes YouTube and the stroke association YouTube exercises and then put a link in the above to that post.

To create a wiki : create a normal post. then at the bottom going to the three dots and select make wiki. That means other people can then add what they think of valuable resources to for example there’s one I can’t remember that’s said to be wonderful for insomnia

I’m sure it won’t make any odds waiting till after your in the new house and it might be something that you’re grateful for the opportunity to sit down with a cup of tea and write a few words rather than move yet another box to unpack. We are in our current house 25 years and we still got boxes we havent unpacked

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Hi @Strings
I’m at the opinion that this only speak adequately to the variety of readers that need it if it’s produced by a variety of writers
I’m quite confident that more contributions the better the result will be and that sometime in the future somebody will read over and think I can bring a few themes out more strongly and tidy up with an edit - so we’ll leave the contributions to mature rather than make any snap decisions

I certainly dont see my opinions as overruling anything else anybody else’s suggestions!

I added yr name as a contributor

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This is a fine screed, any way to pin it?

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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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