Hello - You are no longer alone 
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 
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
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 
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
- 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
- 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
- learn how to use the magnifying glass above
which is the search function and then try searches like “letter of encouragement”, or “anxiety” or … to refine your reading. - 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...
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During this time abilities that weren’t destroyed may come back. This is the basis for “recovery happens in the first 6 months”.
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Also in this time unused tendons will be shortening along with the nerves and the muscles will be atrophying.
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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.
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If you’re unlucky and most of us are, you’ll have fatigue.
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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 
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
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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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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
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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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