👋 Hello 🤗 Welcome

If you just arrived and you need…

…guidance to make sense of your (or a loved one’s) post-neurological event then just read on.
Reading posts is intuitive enough that you might not need guidance.
Read in chunks when fatigue or confusion is a challenge 🤗
If you need help to navigate this site or to guide you in How-To create posts then click here but it’s not the most important thing at the beginning. ‘Post Stroke’ life DOES get better with time and effort (We promise! But we cant promise how much better or how quickly 🙁 )

Several of us wrote this from our needs & experience (We do ‘Get It’)

Hello - You are no longer facing the unknown on your own 🤗

Click Here for a warmer welcome or just read on 1st time through (Click this line to expand the section- and same with others below)
Hello and welcome to the best club in town that doesn’t have a waiting list and nobody would qualify from choice!
Now you’re here know that you have landed in a good place as a #StrokeThriver (A name we can use to cover the whole family & those emotionally and in any-other ways affected 😥 )

Empathy

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

Top Things To Know

We’ve put together in this one place the First 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 stroke 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 and the milestones and inch-pebbles leading to them, to share your journey, to learn what you may expect by reading what feelings, challenges and victories are actually happening in other folk’s journeys.

We ALL start frightened, overwhelmed & with anxiety

It is a hard and unique journey best travelled in company because…"

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 advice on meds or travel insurance and the joy of progress and achievement of milestones over time. Progress only stops if effort is absent.
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 hard to detect and accompanied by setbacks - changes are always happening; have faith and take the steps to make the changes positive.

3 Steps forward then two backwards

There will be times you feel you are stuck in reverse...
… steps forward then a little 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 a 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. Others call them ‘Plateaus’ - they are not the end; they are the start of the next period of progress.

Like babies

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. 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.
#StrokeThrivers 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.

Don’t let fear dominate

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. There is 🙂 So try to put these feelings behind you and believe in your very real ability to fight these unwelcome changes. Others here will help you find the same ways forward they HAVE taken

(Even tiny) Achievements are Recognisable ‘Inch-Pebbles’ to celebrate and will lead to Milestones

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. Post here too 😃 Build a record.

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, tell you about alternative therapies & medication or non-medication! and the Search-Topics, #tags and Categories will help your search for answers to make post-stroke progress.
Building capability (often based on goals - a discussion for another thread) 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. You’ve just survived a near death event! For some that introduces a profound change in outlook on life. It can also cause PTSD for any #StrokeThrivers involved - watch-out for it 🙁

Perhaps the most useful things you can do are:

start reading through other Threads and their Posts. They will answer many of your questions. The community runs on ‘likes’ - When you read a helpful post give it a like. We all like receiving Thanx for our effort 🙂 so dish them out liberally 🙂

when you’re ready (now?) use Start a Discussion to create a thread with your challenges and questions, perhaps share your stroke story - you’ll definitely receive an empathetic response. If you Tag it withWelcome, Back-Stories, Chat & Annoucements and withIntros folk will be able to find it for evermore - but don’t stress the tech stuff - Anywhere and anyhow is GOOD 🙆 - We prize comfort, support and freedom to speak openly above any corporate brand protection

fill in your Bio so other Members here can find out a bit about you

click any tag/category title to list threads tagged to that subject. Click a thread’s title to read the posts in the thread. Or:
Further ways of finding relevant topics...

click the headings/buttons “All Discussions” or “User Directory” (Which will only display the list of community members if your a logged-in member)

clicking someone profile ‘card’ lists all their contributions 🙂. Clicking a contribution opens it.

learn how to use the 🔍️Search Forum🔎 above (OR in the Left Hand Side menu depending on Mobile/Tablet/PC) The 🔍️ is the search function: Try searches like “anxiety” or …
– search is case independent and fuzzy; an exact match is not required. The search seems to find ANY word you enter NOT ALL words you enter (It uses “word OR word OR…” not “word AND word….”). Its not very powerful nor consistent but that’s not something we can do much about at present.

Join the zoom calls from 1pm Thursdays UK Time
We meet online in zoom FROM 1pm UK time on Thursdays in the uk & its already Friday for our NewZealand crew!!!
Use the link [Https://bit.ly/StrokeCafe]bit.ly/StrokeCafe
Anybody want to organize in other timezones Full details link near the end of this entry

Those 1st Things…

Challenges we mostly all share. To greater or lessor extents, in different combinations and severities all of us face most of the below.

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

Here are some ways to deal with some of the realities…Click to expand each heading

Acceptance is often a necessary step before healing...

#StokeThrivers have to be #StrokeWarriors. There are times when Post Stroke (PS) life is summarised by the constant battle that is required to make the best post stroke life.
Acceptance is a necessary step in the journey from Shock then Denial then Acceptance then Healing. Fight the impacts not the cause.
There is very good advice - especially forCarers to know - in 40 Things

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 only happens in the first 6 months” - Which is COMPLETELY wrong 🙁.

Also in this time tendons no longer used will be shortening along with the nerves and the muscles will be atrophying. NeuroPlasticity is a neutral force that CAN help or hinder post stroke abilities. It is NOT a friend nor a foe See here for how to combat undesirable 2^ndry affects

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 because of there affects are not unusual.
If you’re unlucky and most of us are, you’ll have fatigue (maybe as a result of the chemistry and electrical changes). Find the threads about managing post-stroke fatigue - search “Spoons” or “Spoon Theory”(! 🙂)

If you’re dreadfully unlucky, and most of us aren’t, at about 4 months and later you’ll develop central post-stroke pain - we’ve LOTS of threads on that too. This is illustrative of where the Stroke Association is NOT STEPPING UP to their duties. Raising the shortfall is met with systemic hostile & personalised responses from frontline to executive director - shame on them. The cause for the birth of SIG

Sleep Is Important and OFTEN Slow To Normalise. Quality of our sleep and...
…resources dealing with how to improve it are another search to make. Debilitating effects of fatigue and compensatory strategies, Below are links to threads on: Returning to working, Driving, Carer’s support (a neglected topic 😢) . 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 have the opposite and most of us have a mix and are in the middle.

Neuroplasticity: from the time of your stroke onwards neuroplasticity will be operating to build compensations into your habits for deficits. ...

If you take no action those compensations ADD to the recover back-log 🙁

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 etc, to operate the more progress you may see.

The only guarantee is that inaction results in decline - 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. 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 the actions of daily living will be possible and with it interest in exercises. Exercises will sap energy from a greatly reduced battery and at much faster rate than pre-stroke, again this is fatigue. There are threads to search for about keeping diaries to detect causes, good diet and many other strategies on this and many other topics.

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
Other sources of support such as CAB are listed in Other Support Groups below

Driving! - another big topic is the DVLA! and your license

There is a lot to explain!
In short: after a TIA you can legally drive if you have a month clear from the impacts and no medical objections (It’s 6 months though if you have had fits).
Medical staff have an obligation to alert the DVLA.
IF DVLA revoke your license then getting it back is slower and harder than if you surrender it.
See the thread with all the links to relevant dvla web-pages

A few threads of other’s stories that may be anxiety reducing…"

The threads that are created by #StrokeThrivers other than the survivor often chart the journey over some time and thus give context about how anxieties are huge and give way to practical issues and finally give way to a new normal.

These threads can be discovered by searching the common sites; we haven’t yet rebuilt our stock 🙁
Links below are from the our Old Home the JokeForum - whose hostility to suggestions that we wobblers need improvement to the services and care we get is spoiling the reputation of the whole Stroke Association. Some of it’s people do great work but some don’t - and that would be normal & ‘ok’ IF the escalation process and safeguarding provisions worked 🙂 but they are hollow words 🙁 a failure of governance and that is not OK
Here are a couple to start you off.

With a little clicking and returning you will be able to work out how to navigate and read about other people’s journeys.

Help, Mum day 5 post stroke and ups and downs, I’m so scared (Ctrl-Click or Tap and use the Browser/Device’s Back Button)

Husband coming home next week - advice needed!

My Wife’s recovery

Finding Other Support Group

There are many Support Group around (Click Here for Maps and Details of some (Add ones you know of)

And Financial / Concessions/ Blue Badge/ Radar Key and more

Details of many benefits and supports in this post by Kieran PolarBear-@KGB

To Install an App or Desktop Icon

You may have already been prompted to install? You DON’T need it to to be supported by us 🙂 But it maybe more convenient than a bookmark in your browser tabs? Either install from the address bar (Option 1) or click the browser menu button top-right? and scroll down to the "install ” option possibly under another option See Option 2)…

Option 1) to install from the browsers address bar

Option 2) From the menus

A reminder about those weekly zoom chats every Thursday"]

See Zoom Meets - Ctl-Click to open on a newPage

Charter of the Stroke Improvement Group

We’ve some values & aims - in short: “be nice, be constructive, make life better for all” (Ctrl-Click to open on a newPage)

Acknowledgements

*This thread has been put together by @Simon (@SimonInEdinburgh), @EmeraldEyes, @strings, @Mrs5K and @Mahoney @KGB on The Stroke Association forum - That’s why we’ve had to redo and do independently so much, why no progress has been made on so many topics that could easily been progressed to everyones benefit.
Give this post a Like to start the habit 👏