The things we do to solve our problems! My physio remarked, how on Earth did you end up on a site for runners? She knew about Reddit, and of course, loved my research and conclusions. I would have paid £1000 for that insight. Just as I would pay £1000 for the equivalent insight on my foot.
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WARNING: Not light reading
Hi Nigel,
Good Question. My stroke impacted my Motor cortex, Sensory cortex, and Broca’s area. My artery burst, and I could feel my brain showered with warm, wet liquid (blood). It didn’t hurt, but those areas were destroyed, and I had 25 seconds to tell my wife “run, and tell the neighbors I’m having a stroke”… then I couldn’t talk (well I could, but gibberish came out, so I stopped trying). Particularly, my Sensory cortex had to / and still is rerouting everything. The penumbral region of my stroke repaired what damage it could, but my right side was 100% paralyzed for days, well and truly, of course 90% start off with 50% of their body paralyzed.
The cortex is on the outside. So in my case, I knew those brain cells died pretty quickly and permanently. Why do 90% of stroke patients start off with paralysis, though their motor cortex is not involved? I guess the neural networking is so complex, that the trauma affects the balance and stability of the system. Shock, is my guess. But I might ask my Radiologist friend, who would have a good answer, for sure!
ciao, Roland
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Hi Nigel, @Nigelglos
When the blood-brain barrier is breached, all sorts of contaminants flood what was previously a very pure, highly protected, environment (in the brain and spine). The motor cortex is on the outside (dorsal portion of frontal lobe … Brodmann area 4), so it often experiences the brunt of this breach.; even white blood cells class as a contaminant (they usually do not cross the blood-brain barrier). After the stroke, the body works on clearing up that mess, and the motor functions may return. Of course they may not if those brain cells actually die.
Hope this answers your question, ciao, Roland
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Your last post here or maybe your last two posts start my thinking down a line that separates Ischemic and hemorrhagic in ways I have not heard the medical profession talk about.
I’ve not researched but I assume the blood brain barrier is a bit like the coast of Norway that is to say it’s a fractal structure of tremendous length so a ischemic stroke sits outside the barrier to the brain tissue of neurones synapses etc
On the other speculations I have been surprised in all the conversations I’ve seen or heard that there is never discussion of brain networks and when I ask presenters of research they have little to say on the topic and the professionals have nothing. I idly speculate that the impact of a stroke is so overwhelming that any impact is rippled out to impact all networks and that’s all functions. I bet unaffected side is actually affected in the early days as well.
I did in my early days read some stuff about suppression mechanisms between the lessional hemisphere and the ipsy lessional hemisphere but haven’t read anything further. Again I would speculate that neuroplasticity involves an element of suppressing suppression mechanisms
Ciao
Simon
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I did come across a piece which indicated blood was like a poison to the brain. Your reply was an interesting read Roland. Certainly helps with the understanding
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“I think it’s a shame that the wealth of information here, the wealth of intellectual motivation, the wealth of exploration by us all is not being used to create better understanding within the medical profession of how to offer help or where to look for it outside of our immediate diagnosis.”
A belated response, Simon, but it raised something that has been on my mind for weeks. Most of us feel a bit adrift when we arrive home from hospital and desperately need support, education, practical strategies, etc. Our family and even, often, our GPs don’t have a lot of guidance to offer. Fortunately, this forum is a tremendous resource for everybody involved.
I wonder if some of the active people on this forum could put together leaflets or short pamphlets to provide some useful starting points:
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FOR PATIENTS. You have just arrived home from hospital. What can do you to help your recovery in the coming weeks and months?
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FOR FAMILY OR CARERS. Your loved one has just arrived home from hospital. What can you do to help them?
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FOR GPs.
I know that there are a lot of complicated issues are. But if only 10% of patients and their carers ever get to read the material and then find their way to this forum then something valuable has been achieved. When it is stated from the beginning — This leaflet/pamphlet has been written by people who have experienced strokes and who want to share their experience and their knowledge — then it might have more authority and impact.
We might go even further and suggest a book with each chapter on specific topics written by someone who has survived a stroke.
Anyway, just an idea. There’s a readership out there!
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I would add physios to that list as well but as you can see it’s wider.
Just to give an example from today.
My central post stroke pain gives a range of sensations. Numbness, burning and outright pain. One other item to throw in the mix is a sensation of stiffness. My physio has checked me and there is no stiffness/spasticity. My hand, arm and lower leg can give that feeling but it’s fake.
In the rehab unit, I was managed by physios, they requested the Dr on site look at me with a view to prescribing me baclofen, which he duly did. The common medication remedy to spasticity and stiffness.
The rehab unit’s care would often end around 3 months and had it seems, little or no experience of central post stroke pain. They simply prescribed on the basis of a more general text book response and didn’t verify if stiffness existed.
I have probably taken an unnecessary medicine for 2 years, unnecessary cost to NHS, through a lack of knowledge. Not just the original physios, the rehab Dr, various GPs, Pain clinic, Neurology consultant who actually recommended a higher dose recently.
I am not sure what if any negatives there have been for me. Stroke - yes, high blood pressure - yes.
We have so much to offer but cannot easily leverage that benefit.
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We have put together the Welcome - what we wish we'd heard at the start
I’ve worked with a few initiatives that are thinking how to filling the gap. The forum admin is not interested in listening to us - we’ve tried MANY times to engage admin here to no availe.
There is an initiate elsewhere in SA doing something slightly lie that. I’ve spoken to a few professors to - your right to suggest more would be good 
Would you like to chat about doing more? I’m game
Caio
Simon
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Yes Simon, happy to chat about this further. How would you propose we do that?
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Hop on the cafe zoom at any time that suits us both and anybody else who wanted to join in (@EmeraldEyes …
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Tomorrow seems pretty flexible for me Simon. What about something like 14.00?
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It just got less flexible. But am still ok from 14.00 on!
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I’m never available Saturdays, out at pottery, shopping, mums taxi service etc 
May some time on Sunday?
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Yep, Sunday should be fine any time that suits🙂
Something like 11 might be a good time?
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Sorry to be the square peg but 11 on Sundays we are at the farmers market but Sunday afternoon works
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Any time’s good for me so I’ll leave you two to haggle it out 
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What about 15.30 tomorrow afternoon? Feeling decidedly off-colour after 2 nights of less than 4 hours. Deep fatigue — legs and arms made of lead. So I might not be firing on all cylinders. Or any…
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It’s a date 
You could still be doing too much, too soon. And don’t forget healing burns up nutrients as well as fuel, so you might need more than you realise. In other words do you have sufficient carbs and proteins consumed to cover a walk in the park?
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