Your recovery

[ManjiB]

Hello - I am hoping to get a good response to this post which is being created in response to another post by one of our regulars.

This is beyond comical

@mrfrederickson Yes, I remember those tests. I am right side disabled and having to use my left side to compensate means that I am not as skilled as I once was. Drawing the clock face and following the maze wasn’t impossible but was more of a struggle than it was before stroke. I think that with a bit of practice you could have successfully completed those tests. Those of us who have experienced stroke are vulnerable, gullible and willing to believe any promises that suggest that we might b…

My questions are to all you stroke survivors.

How do you feel about how much you have recovered?
What expectations did you have about how much you would/could recover?
Who set/influenced those expectations?
Have you reached the point where you feel you can recover no more?
Did you ever set recovery targets that you could measure?
What are your limiting factors?
Is there anything you would like to do to further aid your recovery that you are not able to do?
If you feel you have peaked and cannot recover more, why is that?
How has stroke affected the way you see your ability to live life as you would like (i.e. pre-stroke).

I am asking because I often see members resigning themselves to their condition and keep thinking why that is so. For me it is hard to understand as I am not a stroke survivor, but I go by what my Mum is doing and she is a stroke survivor. She has had one of the worst strokes you can have and barely survived, but survive she did and she has just kept battling away overcoming many obstacles and set backs. She shows no sign of giving up and sometimes she does my head in as her carer as she demands so much. Her demands are for support, to help her overcome this horrible thing that has happened to her. She shows no sign of giving up and she shows no signs of having plateaued.

There is no doubt that had she had access to things that are out of reach right now (financial constraints) she would be much further down the road to full recovery. This is my observation and some may see it as foolish, unrealistic etc. We have been told by healthcare professionals that our expectations were unrealistic - this was when she was lying in bed post stroke and after they had decided she was not worth supporting.

Money might not buy you recovery but it may help. What will buy you recovery is your belief and your desire to achieve said goal. The human mind and body are capable of incredible feats, but only a select few will ever achieve these [incredible] feats and it will be those who want it the most. To understand this, look at anyone you believe to be a “success” and then see how they achieved it. You may likely find it was through hard work, belief (incredible self belief) and refusal to accept defeat.

It is easy to look others and say if they can’t do it, then how can I? I have heard Andrew Marr mentioned as some sort of benchmark. Why? What is so special about Andrew Marr? Why are you using him as a benchmark for stroke survival?

Should you not be looking for someone who has made the recovery and use them as a benchmark?

If you feel there isn’t anyone then why don’t you say, I will be the first? Either way, why don’t you aspire to full recovery rather than give up?

Sure, it is easy for me to say this as a non-stroke survivor, but I speak as advocate for my Mum. These words (this post) is what my Mum is saying - she is living this “dream”.

If you want to call her foolish or delusional, go right ahead. She will not take it personally, she knows that not everyone can be like her

The above post is on behalf of one of the most remarkable stroke survivors I have ever known.

[Bobbi]

@ManjiB

As you quote from something I wrote I feel I must make some sort of response myself.

As far as I am concerned stroke was an incident quite some time ago. It took place over a relatively short period of time. Probably a few weeks, in fact, during which I acquired some changes, some disabilities.

Various interventions were made by the hospital to which I was taken but I suppose the first intervention was made by my wife when she called for an ambulance. She has told me since that she thought, at the time, that could be the last time she would see me alive.

This was in the midst of the covid panic and elderly folk like myself were being sent to hospital to never return alive. Twenty years before I had been twice treated for heart attacks from which I somehow survived. My lady friend as she was then had seen me die and be resuscitated then.

Overall, to all appearances, things appeared dire. All I can say, as I write this, is that I am still alive and looking forward to a continuation of my life in some form.

I believe the stroke was the result of injury to my brain. This sort of thing is quite possibly fatal and while in hospital I did see a fellow patient who appeared to be making an excellent recovery suddenly over a period of hours worsen and then die.

So I believe stroke survival is stage one of a process. One’s survival depends upon the interventions that are made usually during the first month or two of the onset of the event. It is a very tricky time during which there is no certain outcome and the path for diagnosis and treatment is also uncertain though I believe some advances are being made.

So, I believe, the primary care for weeks or months has one target which is to assure survival. Once this initial phase has been passed then stabilisation and steps are taken to attempt to avoid any repeated occurrence.

All of this could have left the individual damaged and not what they were. There is quite a range of possible outcomes and each case deserves to be viewed with respect to what treatment might be relevant.

We now enter a realm about which books can be written, careers developed. So far the main concern has been about survival.

The next step though is about disability and what can be done about it.

I can promise that disability with lots of money spent on it will no longer be a handicap. Again there is opportunity for books to be written, research projects to be opened and so on.

We are not any where near having answers but we, the million or so of us, have one another. We also have the will to progress towards something better. We do need help and support but I believe that we can build a better world for ourselves and take things in an improved direction.

It is four years since my stroke, I am right side disabled. I involve myself in matters to do with stroke. I hope that I can find a worthwhile place for myself in this world.

Later today I will attend a Zoom meeting where stroke group activities, in particular the ones in which I am involved, and the role that this forum plays and once used to play in these matters.

I must stop here. I have things to do.

keep on keepin on

[jenny-wren]

I will reply briefly as I find long replies difficult to read. I feel I have come to a very negative state. I went out with my walker today which my husband puts in the car. I don’t know what the future holds. If didn’t have him or he needed looking after I don’t know what I’d do. I hope someone can cheer me up. Brief replies only!

[pando]

@ManjiB

My questions are to all you stroke survivors.

It’s great that you ask these questions. You can see that there are many discrepancies between what your mum experiences and the flow of the majority. That’s how I feel and that’s how most survivors, I suspect, see things ; we’re each unique. A few things remain in common, but this is what I say : We were so different from each other before the stroke, so imagine how different we are after it!

Well yes and no ; apparently. We are more like each other than unlike each other.. The human body is the human body… mind-body I should say. Our gut barely works after stroke ; we cannot metabolize efficiently ; our mitochondria run amok. We cannot extract nutrients from our mineral-poor food, hence our body lacks the building blocks to repair, so it leaches the minerals from our reserves / bones leading to osteopenia. Everyone with a severe stroke suffers this problem. Our minds, if we survive the stroke, then have to survive the memory, stress and trauma of the whole ordeal. This may take years. I still have a weekly session with a shrink. Ridding ourselves of fear is a big issue. All this as we fumble about, piecing things together like poor Humpty dumpty.

Your mum’s resilience will no doubt remind you that the human spirit is indeed a force to be reckoned with. At the very least, we need strong faith in our recovery ; little happens without that faith… and hope. The intent to recover is the key. When we see this and put all our might into achieving it then miracles happen. I have seen many such miracles within my own body, and I am left in no doubt that the Good Lord has guided me in my research and revealed healing pathways ; I could not have discovered them on my own.

[Jbob]

This is a very good question , for each survivor the answers will be so different.

For me in terms of survival it’s snakes and ladders with a hint if Nina Simone in the respect every time “it’s a new dawn.. it’s a new day” I start off full of hope and big intentions then they can be derailed almost instantly and drop right down there on a snake. However I know I’m lucky and relatively unscathed so get perspective and get on the best that I can. But everyone has a different story to tell but still look to your mum as an inspirational character.

[ManjiB]

Bobbi - I quote you because I feel I know you as much I can know someone in order to understand where they are coming from and what they stand for. I feel we (you and I) often say the same things using different words and this is great because we compliment each other and between us we get the message across to a wider audience. I feel, rightly or wrongly, my message might not come across in the way I would like it to, or intend it to and that is in part due to the fact I am not a stroke survivor and yet I am often trying to talk as if I was - I merely advocate for my Mum and I don’t think this is always obvious and I sometimes feel this might therefore come across as arrogant, insensitive or offensive.

All these things I can handle, because it is neve my intention for this to be taken as that and nor do I wish to preach to anyone. We are all adults and we can all think for ourselves and we can choose to do what we do. That said, I have always tried to share my experiences and lessons learned with anyone who might care to listen and I have had people come to me to “pick my brain” or seek my views on things or even just to lend an ear.

Hopefully, this explains why I often quote you or use you as a sounding board. You are an inspiration to many on this forum, you lead by example - who can forget your videos on YouTube with you rolling around on the floor trying to get up with commentary from Hillary. You have, as the saying goes, been there, done that and got the ripped T-shirt and a finer role model one cannot ask for.

And of course, I know you will always always respond and share your thoughts, making time for everyone

@Bobbi

I involve myself in matters to do with stroke. I hope that I can find a worthwhile place for myself in this world.

You do more than that - you involve others in matters to do with stroke and you have found a worthwhile place for yourself in this world., let no one tell you otherwise.

Koko!

[ManjiB]

@jenny-wren

I hope someone can cheer me up. B

If haven’t done so already, I can suggest you join @Bobbi 's OMG WhatsApp chat group. I believe this will cheer you up plenty

[ManjiB]

Hey Roland - I merely advocate for my Mum.
I just hope I am doing her words justice, as the last thing I would want is for her to be seen as foolish or delusional.

All I can say is being in her 90s, she has lived through wars, famine, all sorts of discriminations. She lived through times when women did not enjoy anywhere near the level of “equality” and respect they enjoy today and indeed will have been seen as “second class” citizens. She not only lived through that, but she fought all along. She took no s*** from anyone and still doesn’t and nobody tells her what to do. Always, she shared her experiences and she supported others like her and she fought for those who could not stand up for themselves. This is what made her the person she is and that is why she will not be beaten by stroke or indeed anything.

She knows we are all different, but she believes we all have huge potential and that we should all aspire to achieve the best we can and that means reaching our true potential.

She believes in herself, first and foremost and she has faith in her God, she also is stoic and she is very forgiving and understanding and she holds no grudges. There are plenty of source for her strength and resilience and all she wants to do is share these with anyone who would like a piece.

[ManjiB]

@Jbob

still look to your mum

I look at her everyday and I think “I am not worthy …”

@Jbob

I’m lucky and relatively unscathed so get perspective and get on the best that I can

More than this you cannot do! So well done you

[Gnasher]

I’ve been speaking to someone at work today and it’s just over 14 years since he had a stroke. It was then called a mini stroke. It took away his ability to walk without a limp on his right side. Drs at that time said he would have it for rest of his life. Medication was different then also and a lack of physio at the time.

So what did he do. He said I wasn’t going to let this bloody thing stop me from having a normal life. And he pushed himself to the limit. He said I took the bull by the horns and got myself walking with the aid of a frame at first then a walking stick.

And eventually after 18 months he had achieved what the drs said wouldn’t happen. No limp. Did he do right to push himself. Not for me to say.

But yes he said he was lucky he only had a limp after the stroke. But it shows maybe there is hope for all of us and we cant always see the progress we make. But we do make progress in some way.

My stroke affected my speech only and yes its still slurred at times especially if I’m anxious or over tired. But I can talk and even when I know it’s slurring I push myself to speak and not give into it.

What we can’t do is let this beat us.

[Rups]

@ManjiB

How do you feel about how much you have recovered?
What expectations did you have about how much you would/could recover?
Who set/influenced those expectations?
Have you reached the point where you feel you can recover no more?
Did you ever set recovery targets that you could measure?
What are your limiting factors?
Is there anything you would like to do to further aid your recovery that you are not able to do?
If you feel you have peaked and cannot recover more, why is that?
How has stroke affected the way you see your ability to live life as you would like (i.e. pre-stroke).

1. I don’t use the word recovered as to me that signifies an absolute against nature. Is death recovering from life?
2. I expected to be rehabilitated at a satisfactory level by the Summer after the stroke, so ten months. It’s been five years. I have no expectations, I am a natural skeptic, until I see evidence of something changing, I don’t think about it, I just do.
3. No one set any expectations for me. One stroke survivor told me to give it five years or so, another said ten years. It’s arbitrary anyway, there is no rule of thumb, each person’s rehabilitation journey will be different. How long is a piece of string and all that.
4. Will I ever feel completely rehabilitated? I don’t even know what that is. Will my hair reach a point where it no longer greys? Will my skin reach a point where it no longer wrinkles? I’m not seeking to reach a point where I will sit down and say to myself, at last I have done it. I am perfectly cured, like a piece of ham. At times my condition worries me, at times it infuriates me, but I try and enjoy the rehabilitation process because I can’t separate it from life itself. It is life not a thing unto itself.
5. I always set targets, often miss but enjoy having something to work toward. It gets me up in the morning. I had never liked feeling aimless, even before stroke. Can I measure these targets? Not really. It would be different if my condition involved something more physical but my issues are visual-spatial and quite difficult to measure. If my hand didn’t work I could assess movement or feeling but vision is harder to assess because the dependant variables are continuously changing through environment, movement, light, &c. The only dependant variable that is measurable is fatigue.
6. As mentioned above.
7. No, I can do everything I need to do to aid the rehabilitation process if I put my damaged mind to it.
8. Peaked? Plateaued? I don’t think about it, I just wake up every morning and think, what fresh hell is this? In an acerbic way. I have improved over the years as far as measurable things like my gait are concerned. There is always room for improvement. If one practices anything, one will become more efficient at it. Whether or not one has the hwyl to do so is another matter. I play chess with my cousin every few days and have done for years. I haven’t really got better at it because I’m not that fussed about winning. However, I know for a fact that when I first start playing a new video game, it takes time to get accustomed to the gameplay and objectives, by the end, obviously, I have got better at it otherwise I wouldn’t have beat the game.
9. In many ways, stroke has enhanced the way I see life. Stepping out of the rat race and joining the tortoise ramble. Sometimes I see people doing things I once could do like darting down the street or whizzing about without a care, and I sometimes get a spike of envy, however, I have never been a competitive person, not even with myself, so don’t beat myself up about it.

Okay, so I have finished your survey @ManjiB, is there some kind of reward like a free case of beer or Michelin star restaurant voucher or should I just settle for the warm, fuzzy feeling?

[ManjiB]

Gnasher - thank you so much for sharing this. I love everything about your post and I really think your work colleague absolutely did right to push himself to the limit to achieve what he wanted to achieve. He has explained very well exactly how he felt and what he wanted to do. He chose not to be put off by what the doctors told him about recovery prospects. I really hope he went back to them after the 18 months to show them what total and utter nonsense they were spouting.

Certainly, I can say yes, he absolutely was right to do what he did and pushing himself was absolutely what he needed to do and what was right for him. That is not to say the same would work for everyone since not all of us are capable of pushing ourselves to the limit for whatever reason, but we can and should find what works for us.

@Gnasher

But yes he said he was lucky he only had a limp after the stroke

I would suggest that he was not lucky and no matter what sort of stroke he would have had, with his mental attitude and approach he would have achieved what he set out to. His mindset says it all.

@Gnasher

I wasn’t going to let this bloody thing stop me from having a normal life

Wrt your speech condition, again I feel you are absolutely doing the right thing and I truly believe that you too can overcome this in very much the same way your work colleague overcame his deficit .

I look forward to you coming back and reporting that you have now overcome this

I wish you success.

[ManjiB]

Thank you kind Sir for completing the survey and I hope you are at least happy with the warm fuzzy feeling

I would dearly love to reward you for your efforts and would be more than happy to buy you a pint of your favourite stout, though I am not sure I can stretch to a full case

I noticed you slipped in a word which I could not translate into something meaningful in the context of the sentence. If it was accidental, no problem, but if intentional, please put me out of my misery …

@Rups

Whether or not one has the hwyl to do so is another matter.

What does hwyl translate to in the above sentence?

[Rups]

Hwyl (pronounced: hoil) is a lovely Welsh word that essentially means passion, enthusiasm, motivation. I have an elephant’s memory, thanks to associative memory training, so will take you up on that pint if ever our paths are to cross.

[ManjiB]

Just as well I asked, as Google translate suggested it means “fun”.

I shall surely be delighted to buy you that pint

[Rups]

@Rups

Hwyl

Aye, it has multiple meanings; fun, cheers, passion and goodbye, depending on the context.

[Dexster]

I don’t set myself ‘targets’. I don’t think or try to do anything that will bring down my morale. I want to support my brain and body through its healing process by allowing it to mend itself, not by criticising its ability to do so. I have no control over what my body/brain can achieve - I can only open the road that leads to it doing so. I won’t set myself ‘targets’ that I may not achieve because that implies it’s my fault, and being ill is not a fault. Not getting to full recovery is not a failure - any aspect of recovery is a good thing. What is possible is not going to happen to a timescale, and anything I can’t do is not my failure. There is no failure - there is only survival.

[Bobbi]

@Dexster

Well said. You’re speaking the truth there. Thank you.

[IreneFC]

@ManjiB No one helped me, no one gave me any expectations. I challenged myself for my recovery and I am still aiming for full recovery. I took my first flight yesterday, just a baby one to Glasgow, but It was no problem, so another one to tick off my list. When I suffered a stroke I did not settle for how I was left as my mother in law did this and she could have been so much further forward if she didn’t just accept, however she has also done wonderfully as she lives on her own, can cook a proper meal, she does have carers but really they are useless. Regarding her mobility, she has adjusted and accepted. She is a wonderful lady though. I felt completely normal yesterday and it felt lovely. Have a great day. If someone tells me I cant do something I will challenge them.

[Shorn]

I cant say what the future holds for you or anyone@ jenny-wren, but there have been times when I have felt very low for one or another reason , and in time have looked back from a better place. I hope that helps , and I think everyone gets these feelings at times. I hope yours lift .