Relive my Stroke

[pando]

Dear Fellow Warriors,

Here is my stroke story that befell me just over 2 years ago
Although I struggled, I hope it comes across as inspirational
Enjoy, Roland

44 Days

The nightmare nobody wishes to confront. Well, On the 21st September, 2022 I suffered a massive stroke. On the American NIH scale it registered 26/42; indeed very acute, considering that anything over 20 is classed as severe. My blood pressure was 269/198 and that took 3 weeks in hospital to overcome. I then moved to a Rehabilitation centre, but despite the cheery moments you witness above, I was desperately unhappy and in tears most of the time. But since I survived my stroke, I was not about to put anything less than 200% effort into my rehab. Here are 44 days that I have not until now had the courage to relive. It is only after 2¼ years that I feel brave enough to face the trauma that befell me that fateful evening. Of particular note, my wife paid particular attention to my wonderful Chinese doctor that performed a unique procedure, something of a lost art in the world of stroke rehabilitation.

https://www.youtube.com/@Start-Again-xyz

[Bobbi]

Well done. Facing up to it all is no mean feat.

I hope you find that sharing your ‘adventure’ is as useful for you as it has been for me.

Thinking about it so you can put it into words helps to make sense out of the jumble, the confusion and the fear. It even begins to show you a direction and a way to gain hope.

keep on keepin’ on

[MarnieT]

@pando Thankyou for sharing, your recovery journey such strength! I am interested about this remapping the arm? I need more education on it?, never heard of this until now. I have a small range in movement but not to the extent you share in video. Even now years later I still don’t but I guess that everyones mobility is different in ranges. I committed to OT and exercises but feel to much is lost. Is the remapping thing something that needed done in early prevention?

[Joseph1]

I am amazed at your recovery – you’re doing great! Keep going – I find that after my stroke (at the tender young age of 44) I kept improving bit by bit for 25 years.

And I, as you said, was supported by my wife unconditionally then and for the years ever since. I am forever grateful to Laura (my wife) for trying – even today, some 31 years post-stroke – to research therapies for improving my right side. She’s a true gem!

Here’s to our brains, a magical thought machine that does, indeed, take instruction to relearn things!

[pando]

Hello Marnie,

yes, unfortunately, remapping must be dome 10 days after stroke. So blood brain barrier can repair, and BDNF has ‘done its job’. You would not have heard of it, because, nobody has goner through this procedure in this country.

You can refer to a previous post I did on this subject

Remapping my 100% paralysed arm

Someone here asked me what remapping my arm entailed. Here’s the passage from my book. It’s written in the rough… but you may get the gist. I suspect I have not been as clear as I would like to… the significance of this procedure may not be obvious… anyway, here goes : Remapping and reinstating mobility Six months after my stroke, I am left perplexed at why many a limb is left in a lethargic state to wither away until it is too late to remap control to new, undamaged, parts of the brain. In my …

Though I now understand more.

My story is not yet finished; there are many pitfalls overcome / and yet to overcome, but my YouTube cannel will reveal pointers for all, in time. How long ago was your stroke?

Ciao, Roland

[pando]

Thank you Joseph,

there’s more to my story than the 44 days I show in the clip. However, like you, I have great support, and am forever thinking of solutions, and betterments !
I appreciate your encouragement, and wish you many breakthroughs !! But, reading between the lines, what a warrior, you are !! Congrats !!

Godspeed, ciao, Roland

[matt_d13]

That was great. It’s nice you have the footage and photos to look back on - while obviously very hard to do so, im sure you’re glad you have it.
I have a grand total of about 3 pictures from my time in hospital. I’m not sure I’d have looked back at it much if at all either (yet) but I do wish I had more.
Looking forward to seeing more of your progress

[pando]

Thx, Matt

The reason we don’t have pictures of the first 48 hours is because my wife was in shock! I feel stronger for finally having the courage to relive , view and edit this clip.

Your story every bit as important as mine, ciao, Roland

[ManjiB]

Truly remarkable. Whilst we are all different, you are clearly on another plane - I haven’t seen anyone do what you have done after the stroke. The progress you have made and time taken is something I can’t get my head around.

It’s great that you are sharing with us and I hope the healthcare professionals can take something from your experience so that others may benefit from it.

I note you mention your Chinese doctor quite often and I wonder if he is the secret weapon. Would I be right in thinking he is not part of the NHS service? The support you have received seems quite different to what was offered to us on the NHS.

Congratulations and best wishes for your continued journey

[Mrs5K]

@pando Hi Roland, thank you for sharing your story. It is very difficult to look back at those early, difficult days. I found putting my struggles into words quite therapeutic and it definitely helped me understand what had happened.

Your recovery journey is remarkable & I know you have put many many hours of research & work into it.

As most of us find the support of our loved ones is an important part of our recovery. I know I can never repay my family & friends for what they have done for me. Not that they want repaying.

Best of luck on your continuing journey.

Best wishes

Ann

[Mrs5K]

@Joseph1 just popping by to say hi & welcome to the community. Sounds like you have some great support from your wife. They’re invaluable in our recovery aren’t they.

Hope you are continuing to do well.

Best wishes

Ann

[pando]

Hello Manji

I thank you for your kind words. Please note I still have a long way to go, and plenty of anomalies in my own way to sort out !!
Yes, I leant on my team heavily. Yes, my Chinese doctor has and still has a massive part to play. But when we come to stroke, nobody has all the answers, and I often find myself “going it alone”… for, who else has had my exact stroke? Nobody, though we do know a certain set of problems is common to all strokes.

NHS supported me, but my team is not currently NHS. I must say I embrace many therapies, including body work yesterday, and hypnotherapy today!! I am far from idle, and constantly working at my problems with great gusto, and tenacity.

Thank you for following me ; I hope grounding is helping your mother,
Ciao, Roland

[pando]

Ann,

Thank you, your words are always soothing to the ear. We were born to live, not alone, but with the help and support of others. We could never “go it alone”… at least, not for long!

Godspeed, Roland

[ManjiB]

Hi Roland,

I know you have a long way to go - you are going for the 101% recovery, and I know you will achieve it. Ever since I met you I have been fascinated by what you have achieved and how you have done it. All the different therapies and tools you have used and documented and shared with us and how at no time have you pushed anything - always saying, here it is, here is what I do and now go and do your own research to satisfy yourself. This is immensely refreshing and extremely generous

Of course, I have had to be realistic in my own expectations because it is clear to me that much of what you are doing and able to do is not within our (my) scope (sorry - the correct word does not come to me at this moment in time). For example, as much as I would like to engage a Chinese doctor, I don’t believe I could afford to do so. Also, I think that age has been on your side and so you may not have experienced some of the barriers that we have had put in front of us, and which we continue to experience today. Despite that we are doing our best and if I may say so, I think all things considered we have done remarkably well too

We also try to share our experiences and hope others may benefit from our learnings. And in a strange kind of way, I myself feel as though I am training/preparing myself for the stroke that I myself one day succumb to

You and Mum have much in common and in your own ways, you are both remarkable people and people I have been fortunate enough to have in my life. I mean that most sincerely

Thank you for introducing me to Grounding and the minute you told us about it, I knew I had to try it and I am so glad I did. I honestly can’t say if or what effect it is having on Mum but I believe there has been some positive outcome as a result of using it and we are using it every day. As well as that we are using the Revitive Medic which we also believe is beneficial and we do DIY physio/massage etc. All things considered Mum is doing very well.

I plan to resume the leg walker usage which we stopped a while back and for me personally, I am going to buy a few squares of turf and create a little patch square yard or so in the back and I will stand on it bare foot myself so I too can be grounded

Thank you for inspiring me and I hope that in my enthusiasm I have not offended or upset anyone since becoming [hyper]active on this forum over the last few months or so. I don’t have your discipline or mastery to restrain myself from being [over]pushy on occasions

I will continue to follow you (though only on this forum as I have not yet signed up to any “social media” platforms - that said, I have watched your videos on the YouTube Start Again channel, but only as a guest) as I feel I have much to learn from what you are sharing with us

Namaste|

[pando]

@ManjiB

at no time have you pushed anything - always saying, here it is, here is what I do

Yes, that’s my style; not forcing… a little understated… perhaps a hint of invitation.

101% recovery ? that sounds great, but I’ll settle for 100% ! My Chinese dr. believes I should aim for 100%, and that it’s theoretically possible. It makes me happy to think so! A Chinese doctor can help; but it’s not indispensable… it just so happens we have known each other for 20 years, and he considers me like a brother. I do rate TCM of course. I guess I’m saying just pick something but make sure you follow it through. It’s not a magical surefire formula to follow everything I do.

You totally do not have to succumb to stroke… you are going to live a long and happy life. You are very respectful and will learn from everything you come across. I think your attitude and humility is special, and you understand me down to a T. The joys you will reap in life are great and you will deserve every one !!

We are all remarkable, and each one of us has the natural ability to heal ; we just need the right ingredients / nutrients if you like; the body will do the rest and God will be with us if we praise him. Keep going, and thank you so much for your kindness and generosity. Best wishes to you and your Dear mother,

ciao, Roland

[matt_d13]

Genuine question Roland. You mention religion in your video, and again in your reply here.

Why use the words ‘praise him’ for allowing something that took so much of you?

I’m not looking for an argument, I just never have the opportunity to ask someone a question like this, who has personally been through more than the average.

[pando]

Matt,

ah I see & respect your point of view. My stroke has brought me even closer to God, because it showed me our fragility; surviving it has made me wiser… and hopefully there’s more to come. Adversity is good for us.

If you ever watched “Contact” by Carl Sagan, you will know about the Yin-Yang-like duality between Dr. Ellie Arroway and Palmer Joss. I struggled with this my whole life to some extent - we all do. I respect both sides of the equation, but ultimately the balance for me tips towards God, because (as also stated in the film) I wouldn’t want to live in a world without God. He offers me an extra dimension , an extra richness to life, and a bit more than that. I admire Newton; a grand scientist who reconciled science & religion in all its glory.

I’m multilayered, and I’m fallible but this is the way I love to think.
Thanks for following me so closely ; in time, I will cover my beliefs in “Start Again”, my 4 near death experiences, my family’s escape from biafra, my music and art, and most of all how I have relied and interacted with extraordinary people to thrive ! Greetings, Roland

https://www.youtube.com/@Start-Again-xyz

[ManjiB]

@pando

101% recovery ?

Sorry Roland - that was a typo on my part, I actually meant 110%.

I am with you on your journey and I know you will make it - you are no different to any elite athletes or achievers who go on to achieve these goals.

[Anna_Moderator]

Hi @pando

Having been off last week, I’m just catching up on what’s been happening and I had to comment on this and echo what everyone else has said, your progress has been amazing. It definitely takes courage to re-live those early days and memories so well done on creating this and I hope it felt cathartic to do so.

Anna

[pando]

Thank you Anna,

Yes, difficult at first, but ultimately beneficial for me to do. and hopefully a good watch for stroke survivors. I’ll go a step further and quote the reaction from a good friend of mine who happens to be one of the top Radiologists in the country :

“I think stroke doctors should show this to their patients and trainee doctors. There is a lot to learn in it. Other patients should watch this to get encouragement. Very inspirational.”

I would be happy if a patent drew inspiration and hope from it,
Thanks again, Roland
https://www.youtube.com/@Start-Again-xyz