I think I’ve mentioned this before but I’m seeing more comments alluding to it.
Did you have denial when you had a stroke? Coming up on 10 weeks and I have moments of sheer acceptance and others of bleak denial. Mental struggle is by far the hardest for me.
(Honestly not helped by the fact that they got my notes mixed up with another patient the day I went into hospital lol).
I assume it’s like stages of grief, especially in the early days. How did you get around it?
@matt_d13 I know I was initially in denial about my stroke. Even when I was being told by the consultant i’d had a stroke I was thinking “don’t be silly I can’t have had a stroke”.
I don’t know if i did anything to get around it other than realising i must have had because I couldn’t do all the things I used to.
You do have to get to an acceptance stage but that can take many weeks/months. Don’t be too hard on yourself at this stage…you are very early on yet.
Best wishes
Ann
Hey Matt,
I knew I was having a stroke within the first 10 seconds. That’s just because it’s me, and I would know such things. However, I sure most of the time, in the 2 years since, I have lived in denial, to some degree or other. Why? Survival. There’s only so much we can cope with at any one time. It’s good to let things sink in slowly… especially things that are hard to swallow.
Ciao, Roland
@matt_d13
I realised I was having a stroke when I couldn’t stand up. I wasn’t afraid but I was rather fascinated by what was happening, especially as I ‘recovered’ about ten times before the clot stopped moving around and finally settled - at least that’s what appeared to happen! I’ve never been in denial as such but I’ve always expected to recover most of what was lost. That could be considered denial I suppose or maybe it’s being unrealistic. I don’t know the answer to that yet because I’m still waiting😁
Trace
SIG
All I had to go off was sudden dizziness, speech and co ordination didn’t happen till I was on the way to hospital and resolved quickly ish!
@matt_d13 do the survey at
Did ANYONE have classic FAST symptoms
(And if you haven’t @Trace57 ?)
But there’s a difference (isn’t there?) between recognising that you’re having one and accepting it’s potentially going to impact every aspect.
I’m with you Tracy in that I expect to be able to live a reasonable life and I’ve just got a different collection of shite to deal with - most of it would inevitably arrive at some point anyway…
There is a cycle which you rightly compare to grief Matt of
Shock, Anger & Resistance, Acceptance, Healing (SARAH)
Elizabeth Kubler-Ross was an early describer of the cycle. The stages are experienced in sequence and with reversion to earlier stages possible.
There’s a similar model by a guy called Fisher which is a general case for personal transition through complex change.
The mental struggle will likely last a lot longer than most other aspects. It’s the least talked about and probably the most significant.
Also 10 weeks is probably long enough for most of the physical healing from clots and or dissections to be conculding. SO the brain chemistry changes may start. They may introduce secondary impacts. Also the delightfully euphemistically worded decompositionsv are an ever present potential factor
Stroke; the present that keeps on giving
Caio
Simon
SIG
I always accepted I had had a stroke from the get go but I, foolishly, thought I could get on top of the damage by the following Summer. I have since eaten several berets, a couple of trilbies, a few bowlers, one or two caps and the occasional sombrero in the process of rewiring after the fact.
@SimonInEdinburgh Can’t remember if I did the survey but I’ve done it now😁
But there’s a difference (isn’t there?) between recognising that you’re having one and accepting it’s potentially going to impact every aspect.
Yes, I believe there’s a difference. I think I worked out what level of disability would be acceptable to me while I was in rehab ( as if I really had any choice in the matter😳duh!) But looking at many of the others on the ward, I could see I wasn’t as badly affected and even played it down a bit only to be told by an OT that it was ‘nasty enough’. I was very fortunate in that speech, cognition and swallowing were unaffected but on the downside of that, friends and family had a preconceived idea of what stroke looks like and therefore wrongly determined that my brain injury wasn’t that bad. A friend who is an ICU stroke nurse at a London hospital visited me on the 2nd day and remarked “you’re not a stroke patient, Tracey” even though I was clearly paralysed down the left side. I wasn’t sure what she meant but it might have been because I was on an emotional high. Weird, I know, but right from the start I was determined I was going to beat it so motivation was very high. Now some family and friends are wondering why there’s a delay in my return to ‘normal’ life, almost as though I’m doing something ( or not doing something I should be doing )to stop it. I just keep repeating that the secondary effects of very uncomfortable sensory changes are enough to keep me at home most of the time and that I would love to go out more and that I will, and do, when I have days that are better.
What didn’t help was those genuinely lovely staff who told me I’d be walking normally within a few months, that things would look very different (in a good way) in a years time. They meant well but it misled me into believing it would happen within that time frame. No-one mentioned how brain chemistry changes might impact recovery. If it wasn’t for this horrible sensory stuff, I probably would be almost back to normal. In the meantime, I’m doing what I can to make life easier. I can be patient. It won’t always be like this.
Trace
SIG
Hi Ann. I have been thinking about this a lot recently. Denial vs acceptance or ?. ‘acceptance’ – is that a word we should use for what’s happened to us? Or is that too defeatist? Or is it more complex than that – perhaps acceptance of the actual event (we cannot argue with the medical description). But not of the subsequent conditions and how the stroke has impacted us? That’s where we can do something about it. If only small steps, small improvements. I had my stroke over 3 years ago when I was 67 (impacted my left-hand side control). Up until the day before, I was an active runner (often beat people half my age in the weekly park runs) and played keyboards in a semi pro cover band. Both pastimes seem unobtainable as I lay in the hospital bed, coming to terms with this major event. However, 3 years on, I am back playing in a band (for charity – not good enough to go back to semi pro, although that is more down to fatigue than playing skill). I still can’t run (keep tripping up) but I can walk quite fast (up to 3k at a push) but my Garmin enables me to track my speed and give me something to aim for. And I have found a nice group of similarly mature music lovers to share the love of playing music.
So as I look back on the balance sheet of “before after stroke”, there at least some aspects to put on the right hand side.
So is ‘acceptance’ a good word to describe how we all feel – or is it something more subtle?
@Retrokeyplayer for me I think acceptance was about accepting what had happened & accepting the current level of limitations, at the various points of my journey. This helped me deal with the situation better & find ways to live life with those deficits. It didn’t mean accepting that that’s where i’d stay. So my acceptance comes with a bucket load of hope & determination to keep moving forward & getting closer to where I want to be…which may not be where I was pre-stroke. I had to find a level of acceptance as it helped me move forward with my life. Not sure if i have explained that very well.
It’s great to read that you have got back to your music & are doing so well with your walking. Running may come yet for you.
Best wishes
Ann
Ann
“bucket load of hope and determination to keep moving forward”. Thanks Ann. I like that bit! It may help to explain to others when they are surprised by my progress. And also, the recognition the direction forwards may be different to pre-stroke. Certainly the emotional changes I have experienced are worth welcoming rather than hating. Lots more emotions to tune in too - enhanced enjoyment of music is one; meeting and talking to other people, as well.
It’s always good when people write about how there are silver linings to this cloud.
Yes, I keep expecting to recover but it’s not happening. I suppose it’s hard to accept painful realities.
What’s the story behind "not improving ”
The statistics are that capabilities often less at the 5-year mark than it was at 6 months Mark. These are stats gathered from the older community with no therapy support. Are these your circumstances?
You did say that you were a carer when you had your stroke so I guess a bit it younger? I know nothing of your circumstances.
If you can make effort you can generally make progress but only at the speed dictated by circumstances - mine was glacial but has now sped up to be snails
Caio
Simon
SIG
I saw there is something called FES and asked my GP to refer but I had to change GP Practice due to it being no longer near enough for me to get to easily enough, and she was anyway doubtful if too much time had gone by since my original strokes ( now diagnosed as bilateral basal ganglia strokes, not a TIA). Last week paramedic told me that basal ganglia strokes are fairly uncommon and therefore poorly recognised and symptoms can vary widely with them. The main enemy of Improvemnet seems to be my very limited energy but I also have pre existing or accompanying conditions that don’t help at all. Anyone tried FES? The magazine the Association produces advertises it.
Hi @Shorn
FES functional electrical stimulation. It will help you to maintain muscle and tendon length triggering nerves to move musceles around while the brain is not able to do it.
You can achieve it by passing stretching to . Ideally I guess I should start in the first couple of weeks post stroke but the second best time to start is today. Very capable machines are on Amazon for 30 quid.
Neuroplasticity will have been a factor from your stroke moment onwards. When not encouraged to be positive it will be active and negative 
The second best time to start active neuroplasticity is also today
If you have some movement and feeling then you can set exercise goals to improve it by 1% and then find exercises at the level of your current capability.
Two good YouTube channels are Elyse Newlands and Tara Tobias
Elyse is at
https://youtube.com/@poststrokeorg?si=Wb-dHBu-qkyVok5a
Tara is at
https://youtube.com/@rehabhqofficial?si=MHlebfvtt8QSR2C6
Elyse asks for a donation via patreon and Tara has a subscription at $4.99 a month
But both have a great deal available for free.
Depending on whether your focus is upper limb, or 
lower limb or both there are other resources around that are useful I can suggest.
A major factor is motivation But that’s another topic
Caio
Simon
SIG
Thank you that’s really helpful! Need to take a rest now but I will try to look into those YouTube links.
For the first year post stroke I was in denial that I would never drive again ,then came acceptance and with it the realisation that this would have a major impact on my life going forward.
Probably spent the 2nd year in a depressed state before I gradually became determined to make some effort to see what I could still do.
12 more years finds me adapted to those defects that I have and working around them to live an almost normal life.
I am 77 ,able to look after myself and live at home,
I think that acceptance of what has happened to you takes time ,and thereafter you can move on.