Hi, my name is Ian and about 12 months ago I suffered a haemorrhagic stroke.People see that my arms and legs are fine, my face and speech are fine. So I prefer to say that I had a bleed on the brain. My brain is scrambled. The stroke consultant was quite frank with me in saying he could do nothing more. A stroke is the death of part of the brain and nothing can bring it back.Although the community will talk about working around the failure .
My largest post stroke life limiting effect is as follows.
After a walk of about 1 mile say in about 3/4 of an hour, my steps will get smaller and smaller until eventually I freeze. The following events that happen in rapid succession. I pivot anticlockwise on my right leg, my left leg goes backwards I stumble to regain balance and my legs buckle from beneath me and I go down to the pavement with no strength to get up.
It is very scary and although I can get to the shops I am fearful of walking anywhere unaccompanied. my friend volunteers a lot of help even he won’t walk where there are no streets because he knows he must get back to his car and rescue me. After being seated for a similar period say 3/4 of an hour I regain strength.
I feel that if this disability can be named it would be a starting point in searching through forums for other sufferers. surely I can’t be the 1st to come across this! The name might also help in searching through the NHS website.
@Brigotta Hi Ian & welcome to the community. Sorry you’ve had a stroke but hope you get some useful advice from us here.
As Simon has mentioned your symptoms could be a consequence of fatigue. Perhaps you are walking further than you are really able to manage right now. Would it happen if you were to walk a shorter distance?
One other condition that can occur as a consequence of a stroke (but can be caused by many other things too) is Functional Neurological Disorder (FND). This is where the signals from your brain are a bit scrambled & cause unusual affects. Might not be that but worth a look perhaps. Have a look at this website.
Thanks, Simon, if only for introducing me to the concept of spoons!
Fatigue is a strange onset after such a short time. It has also been suggested that heat causes muscles to wilt. My legs don’t feel hot nor do I generally feel tired.
It took me a six week wait to see my GP. He kept his own council and said little. In my area you are allowed to self refer to physio and he suggested I do that. That’s another eight week wait for attention!
However what exercises can a physio suggest when he won’t see me in extremis? I feel that like the stroke consultant, these doctors don’t believe me or take me seriously. They seem to believe that their training and experience has qualified them to know everything. I don’t expect anyone to know everything. I asked if there was some professional newsletter where oddball cases can be shared, rather like this community, but they look at me stupidly. it is most frustrating when you cannot be believed.
The reason for all this fatigue post stroke is very clear to me ; dysfunctional mitochondria. (it’s where we get 90% of our energy from ; but if ‘they’ die, we die). I, and countless others suffer from this condition. I am going to tell you what I wished I had known about 2 years ago, after my stroke. The question is can we rehab them, and look after them well enough to regain 75% efficiency? That’s what I research night and Day.
Mitochondrial dysfunction caused by oxygen and glucose deprivation occurs a few minutes after stroke, leading to consumption of ATP (energy) production and overproduction of ROS . The central area of ischaemia induces irreversible necrosis of neurons owing to interruption of blood supply and energy exhaustion. Mitochondrion is the powerhouse of the cell, which is essential for cell survival after cerebral ischemia/reperfusion. Mitochondrion is a sensitive organelle susceptible to brain ischemia/reperfusion injury. Mitochondrial dysfunction is one of the foremost events involved in brain ischemia/reperfusion process and then induces further damage to brain cells. It influences not only the fate of neural cells but also blood-brain barrier permeability after ischemic stroke. In summary, mitochondrial dysfunction is not simply the result of ischemia/reperfusion injury but also the cause of cascading damage. So, protecting dysfunctional mitochondria is pivotal to cell survival after ischemic stroke.
Here’s a paper in Pub Med about it
It’s a large topic to research, especially if you do not know what a mitochondrion is, let alone realize they are charged by the sun which is the key. It worked on me; I was a different person after recharging my cells in Kos for 2 weeks. I have ordered a Sperti Vitamin D Sunlamp ; my radiologist informs me it works The effect of ultraviolet radiation from a novel portable fluorescent lamp on serum 25-hydroxyvitamin D3 levels in healthy adults with Fitzpatrick skin types II and III - PubMed since there is no Vitamin D that can be obtained from the sun in the UK for about 130 days. (Check the D.minder app for android or iphone by Dr. Holick, an expert on Vit D. ) He says large doses of Vitamin D regulate the expression of around 300-1200 genes. So the answer is Vitamin D, but you have to research it carefully and be aware of cofactors Vit K2 mk7 and Mg that help absorb and direct Calcium into our bones.
This might sound like gobbledygook, but at least I’ve tried to get the word out. Fatigue is mentioned so often, yet never understood. I aim to reach 10,000 IU of D a day, but I’m not doing well assimilating it, and finding I need to step up my doses gradually. If you’d like a plain English rundown I could attempt one !! Whether you accept or reject my suggestions, I wish you good luck in your search for an answer.
@Brigotta Hi Ian, welcome to the community, I’m sorry to hear about your stroke and the difficulties you’re facing.
As a couple of people have mentioned about these difficulties possibly being linked to fatigue I thought it would be good to share our information page on fatigue which you can find here.
I hope you’ll continue to find some useful information within the community, there is so much knowledge that everyone has here.
If you need anything whilst using the Online Community please don’t hesitate to tag me using the @ symbol.
As you say, a lot to research. A lot of terms to check out. I do have a SAD lamp would that do?
The MS forum mentions core strength so perhaps my GP was right in referring me to a physio.
SAD lamps do not have UVB needed to generate Vitamin D.
CORE work is essential… you can do it with physio, that’s a starter, but you need to sustain exercises on your own ultimately
Core stability and leg strength are paramount for walking.
Sit to stands or squats and stair climbing (if you have them) are great for strengthening your legs. Naturally, you may need to hold onto something for squats depending on your level of ability/stability.
And here are a few core exercises you can do, some are better done on the floor for stability and those for lying on your back could be done on your bed for comfort.
The 2 keys things to remember with these are to pull/suck your tummy in as you do them and always remember to keep breathing, so don’t hold your breath, we don’t want you passing out
Do at least 5 repetitions of each daily, gradually building up to 3 set of 10 repetitions, depending on your level of fitness/abilities.
And here’s a short video clip on how to get back up after a fall.
Ste is using a chair for this demonstration, but when you fall whilst out and about, it can be a wall, steps, tree truck, whatever to aid you getting back up.
Ste is one of fitness instructors from my local strength & balance group run by Age UK. And it would be worth checking out if you have any similar over 50’s classes in your area run by Age UK or anyone else.
Ah but you’re just being pedantic
But I’m sure you get the gist
Besides that’s just the basics. There’s also assessing yourself for injuries in a fall before attempting to get up.
But this method is actually useful for getting down and up from the floor to do the exercises above. And that particular demo was the first thing they showed and had us doing at the start of a 12wk pilatus course we did last year. As AgeUK is for all over 50’s naturally you have quite the list of varying health issues and varying abilities/disabilities amongst them all And it even worked for the lady with bad knees…with a little assistance
Our accomplishments in posting, hyperlinks and footnotes have only developed/improved along with our recovery. Certainly when I first joined I could only manage to read posts. It took a year or more before I managed to write a post
Now you can’t shut me up
And it even worked for the lady with bad knees…with a little assistance 
