Then in the drop-down box select Red Group.
If they proved to be too easy then return to the link and select Amber Group. You have to see how her fatigue levels are 2 days following her exercise before you know whether they were to demanding in terms of energy available
I’m glad you feel better by having posted
I’d also suggest that you don’t view yourself as a passenger. You have a role as carer and that can be extremely demanding especially as it goes on and on. This is a place for survivors and carers. Together we are all #StrokeWarriors or #StrokeThrivers
Most of us who have otherwise unexplained I ischaemic strokes get neck ultrasounds to check the cartiod arteries - are not too clogged. If they are then an operation to scrape them out is sometimes suggested depending on risk.
Salt can be a factor in high blood pressure.
it also makes things taste better for some people and taste is a component of being encouraged to eat - eating is important for healing energy - so lack of salt isn’t necessarily a good thing - being risk factors/ diet where is
Just wanted to introduce myself.
I’ve been a long time reader of the forum, but thought I’d drop in & say hello at last.
33 year old gent, suffered a haemorrhagic stroke in March 2022, caused by an AVM. (Arteriovenous Malformation) which wiped out the whole of my left side. Began taking small steps in rehabilitation back in July 2022 and been trying to build from there every single day, I like to think I’m going from strength to strength in this emotional rollercoaster of stroke recovery.
Hoping I can contribute to this fantastic community
Hi @DanH
A warm welcome to the best club in town with no queue to join
I guess If you’ve been a long time reader that has without registering as a user? Great now you have
& Nice to see you introduce yourself - We become aware of people when they post. Until then while there could easily be a mechanism there isn’t one to help us to welcome people
Have you read the welcome post - Click the blue text - It says the standard stuff that we say to new joiners - please feel free to edit it if you see ways to improve it
Yes it is a roller coaster especially for the emotions of all involved. I hope your daughter hasnt been to affected?.
If you’ve been making steady progress there will be a few here (quite possibly even majority) who are jealous because most of us seem to take two steps forwards and one back or maybe that’s three vs two
Yes this community does really get it in wats those who haven’t had a stroke, whatever their role - really don’t understand
Hi Dan Ioh my goodness I suffered a hemmoragic stroke too in oct 7th 22 I was getting ready for work and my daughter phoned she never phoned me in the morning whilst on the phone I suddenly lost my hearing in my left side I said I couldn’t hear her she said she was shouting I had a whooshing sound in my ear then my eye sight went my speech I couldn’t walk it was horrific ! I then don’t remember anything my daughter came round called for an ambulance and I also awoke in hospital it since been found out I also have a AVM I’d never heard of one. I’m waiting on a procedure up in London as they cannot operate as too dangerous! ( huge stroke or death they said) to have something called gamma knife habe you got to have that? I am recovering and improving but still can’t drive as siffered two seizures in hospital and can’t work having worked for 44 years of my life as a carer living my job. I’m relieved to hear someone else has had this even tho they said it was very rare I’m also very sorry to hear you’ve had one too tho. I’ve been left with various things I cant-do how about you? You are so young bless you sorry I’ve rambled on I’m nearly 60 kindest regards micky
Can I reflect respectfully that that sentence is one word to short
That I can’t do yet -
(You might never do whatever it is but the yet ads hope and hopefully the motivation to try and trying is the on/off switch - Walt Disney said it best “whether you say you can or you can’t you are correct”
I hope these thoughts are helpful in your recovery journey - they sustain me and sometimes I need that
Micky, great to meet you my friend.
I too had never heard of an AVM before! Scary stuff aren’t they.
I had the embolisation in hospital on the evening my stroke occurred.
After I was discharged from rehabilitation I went for a course of gammaknife surgery In Sheffield, that will be 12 months In March when I had this done. I believe I’ll have an angiogram and CT to see the effects of the gammaknife on the AVM.
If there’s anything I can help with or if you have any questions on it please don’t hesitate to ask.
It’s a really straight forward procedure and you’ll be in excellent hands.
There are things I struggle with unfortunately but I’m learning to adapt.
My left hand & arm has no movement YET, and the foot drop syndrome is frustrating but I won’t quit.
Back on the road driving after passing the post stroke driving assessment & back thinking of the viability of getting back into full time employment.
Absolutely the right sentiment “yet” - What do you have in terms of mental connection to shoulder elbow wrist and fingers?
I don’t know more than Google tells me about the tangled web of an AVM, and I’ve only got experience from the inside of getting one shoulder and one elbow up to 80% and only one experience of getting a hand and fingers on the road to a higher percentage (maybe 10 to 30% ATM) that I’m willing to share
Im new to this forum and can’t figure out how to start a topic. I did manage to find the video, but can’t find the New Topic button she mentioned. I dont know where this post will go, so apologies if it interrupts someone else’s “conversation” my brain fatigue and tired eyes from stroke keep me from focusing too long, more than a few minutes online. Thanks
Hi @Trishk
Welcome to the forum, sorry you’ve had caused to join us.
I’ve always found all the stroke thrivers ( carers and survivors) Here to be thoroughly unfazed by which catagory things end up in & almost everyone recognises that topics meander a bit .
You haven’t told us much about you needs for support etc but a lot of the initial thoughts are gathered into Welcome post Click here on the blue text to follow.
Given your tired eyes and short attention capacity (which will likely improve ) You likely don’t want to expand the headings on first reading and may want to come at it in one or three or six bites
The new topic button is reached by clicking the hamburger menu that’s the three bars at the top of the page
We look forward to hearing more about your journey.
if you read, particularly if you search for keywords with magnifying glass above youll find a wealth of previously shared content from the stroke thrivers who generously give their experiences
Hi, seems I sent a reply to "no reply which isn’t unusual for me, stroke or no stroke. Thanks, I found a way to do new topic, as the hamburger thingy you showed me didn’t come up for me. Im a bit of an introvert so will probably keep low profile on this forum, but look forward to getting and maybe providing support.
Patricia
Hello my name is aldo. Had a hemorrhagic stroke on my rigth temporal lobe 2yrs ago i was at work strted feeling stressed oit overwhelming feeling of anxiety astarted sweating and left arm started feeling fuzzy then went flaccid co workers called paramedics Got their in five contracted pneumonia at the hospital few hrs after admitting i was in bad shape for a few days then got craneatomy surgery and got significantly better in folowing days was in inpatient rehab for 3months then discharged home then 3wks into being home expirienced spontaneous recovery from arm hand balance
Hello simon. No not back at work yet, Yeah the mechnisms of spontaneous recovery are usually due to actual trauma healing in the putamen region of brain function returning due to healing cellular level. I actually had a regression after spontaneous recovery full movement of my arm and hand just needed to strengthen certain muscle mechanisms flexions mostly. Regression but i didnt return completely to same level of deficit …… iam somewhere in the midle … i think yhats what they mean by spontaneous recovery is not complete recovery you must continue recovery through neuroplasticity
I just wanted to say hello. I have been dipping into the forum regularly for weeks and found much reassurance from you all.
I am 73, in good health, never been in hospital, on a low dose of amlodipine for the last couple of years. Did a Pilates class weekly, did at least one 5-7 mile walk a week as well as shorter walks most days. I was mentally active too. I apparently ticked none of the boxes for stroke risk — apart from age I suppose. Then on January 4th I suddenly stopped being able to talk. I ended up a few hours later in hospital and, after a scan, was diagnosed with a haemorrhagic stroke.
Fortunately it was a mild one and I was home 2 days later. The consultant sad it was ‘a subtle bleed on the brain.’ After 24 hours my initial aphasia turned into acute dyslexia. That slowly resolved after 2-3 weeks. So to all intents I was back where I began. I was optimistic that this was a minor blip and I would find practical steps to return to ‘normal life.’
It hasn’t been so smooth a process. Headaches, sleeping 5 hours a night instead of my customary 7, bouts of fatigue, inability to concentrate and what increasingly seems to be some kind of anxiety continue to bother me — a lot. I suddenly find myself hot and uncomfortable in public places. It feels like some kind of claustrophobia perhaps. I seem to be hyper-sensitive to loud noises. It’s like all my defences are down and I am overwhelmed by the material word around me. I am struggling after 10 weeks more than I did after 4 weeks and find myself withdrawing from the world and my friends.
I have also had a couple of brief bouts of not being able to talk. One landed me in hospital for 5 hours last weekend. I notice if I am active and then get tired and stressed, I get neck ache and I start slurring my words. I have an MRI scan in April and finally get to see my consultant in May.
I feel like I am moaning when I got off pretty lightly compared to a lot of you. Apologies. But my initial confidence that recovery was going to be a breeze has been severely dented. I need to learn more about my condition and how to manage it. So I will keep coming here. Thanks again.
It covers off a few oft repeated foundational things - You’ve managed to identify them mostly yourself though: there is often a period of emerging compensations and changes that may be goes on for a half a year or more, fatigue goes through various stages as do things like sensory perception and they may change around the three or four month mark, sensitivity to new things or people and lights and noise may give rise to emotional changes and anxiety.
If you come to our Thursday zooms you’ll find a lot of the conversation mentions anxiety from pretty much everyone (But there’s also a lot about achievements, progress, revealed understanding, and the usual moaning about the state of politics or the roads or… )
The stroke journey is a characterised by progress and setbacks. If you are noticing the setbacks maybe you don’t have the things in place to focus and notice the progress - which would be healthier for you concentrate on the progress that you’re making because with with effort comes progress and progress improves state of mind which improves progress in a virtuous circle
If you continue chatting here I’m sure you will get lots of support
Thanks Simon, yes I have read the welcome post. Unfortunately I couldn’t find out how to post a comment and when I eventually did it seems to have disappeared. So I didn’t get the chance to belatedly introduce myself.
Reading the many comments and discussions on the forum is very chastening. Some dreadful suffering and incredible courage. It’s also very helpful. I have read around printed and online sources and learned a lot. But some key things I only learned through reading in the forum. So you are doing a great job. I shall continue to consult your pages on a regular basis.
I appreciate your comment about looking at the positives rather than the negatives. Unfortunately in my case I seem to have little progress to report in the last 6-8 weeks. I am more confused than I have ever been. Should I be venturing out, doing things, meeting people — despite getting exhausted, red-faced with a thick headache? It seems to end up in spells of deep fatigue. Is this harming my long-term recovery? Should I be taking it easy and avoiding pressure? But isn’t this a retreat? And I am aware that my physical strength is slowly deteriorating. I suppose the answer has to be: try to maintain a balance, pacing myself, going out into the world some days and others staying quietly at home. That’s what I am trying to do but there seems little margin for error. I am either overdoing things or not doing anything but mooching around indoors.
Anyway, sorry to moan on. I appreciate I got off lightly compared to most. But I was sent home without any kind of rehabilitation or support. Take paracetamol only and don’t overdo it! Your forum is an oasis in the desert. So a thousand thanks.
Do you mean welcome posts seem to disappear or you drafted a reply and that seemed to disappear? If you go to your avatar over the top of the screen and click it and then click the profile icon you’ll see a menu entry for drafts. Elsewise if you go to the magnifying glass and type in welcome post and hit search you’ll get a list of all the matches
WRT The conundrums that are presenting; there will doubtless be a variety of opinion amongst other users - I would suggest doing what makes you happiest ‘now’ as a general guideline, then I would suggest push the boundaries very gently one direction or another to test the waters and then do the same in another direction and you will slowly build both your understanding and possibly your capability.
Bear in mind that capability will be fluctuating on its own. Reading on here will show you how others are testing their boundaries. Some folk keeper diary because sometimes cause and effect is delayed and multiple causes might be needed for an effect.
If you had said months rather than weeks I would still be saying “when you make effort you are making a progress” but when you make progress it only becomes visible, noticeable when the combination of neurological muscular skeletal and any other factors come together.
As a rough description from a layman’s perspective IE mine - I attempt to stretch my tendons to normal operating range, exercise my muscles to at least seem to acknowledge there is a brain giving them instructions even if they won’t actually move. I have some that seem unreachable some that are reachable but unresponsive and some that are reachable and responsive but only in certain orientations.
With these last i attempt to make them respond quicker stronger faster and at the range of their capability.
I also attempt to involve them in my daily life for example loading and clearing the washing machine right handed.
I’ve been doing that for 3 and 1/2 years. As another example I can very nearly wash my left armpit with my right hand - the shoulder and elbow are up to it, the wrist almost and the fingers the least but that is a huge improvement on a year ago which is a huge improvement on 2 years ago and unrecognisable from when I left hospital
I’ve been working with a allied health professions strategic leader in the NHS on the hospital to home disconnect. I have done a little with the stroke association on a similar topic and have some meetings with the Neurological Alliance and Chest On Stroke Scotland next week - My question to all of them is why is it I can ask 10 stroke thrivers and 7 or more of them say they had poor support?
I think it’s a shame that there is no organisation here amongst the forum members and the forum admin are uncooperative indeed I have found them hostile with a different orientation we could expand the oasis
Sorry Simon, on the mysterious disappearing entry — it was just me being incompetent in navigating around the site. Among my many other failings is an inability to read instructions!
I understand what you say about gently expanding boundaries and I am thinking along those lines. It seems that half my day I am optimistic and active, with a life and a future. And the other half I am sunk in gloom and fatigue and impending doom. Ho hum. Bright spring mornings like this are the best medicine. I shall head out for an hour in the sun later. I am a great believer in the health-giving properties of sunlight. I will, as you suggest, do the things that give me a boost.
I thought my inability to do certain basic things — like sit on a crowded bus, walk around a large busy supermarket, or sit down to some focused work on the computer — were direct effects of my stroke. “Deficits.” That, just as my illiteracy turned into dyslexia and then returned to normal over a few weeks, so my energy and social capacities would somehow just return. I see now that it’s more complicated and that what I am struggling with is some kind of generalised anxiety. I am starting to learn how to deal with that and have found some helpful and practical strategies. Patience is not one of my virtues.
On your final point, as soon as I sent my reply about being sent home without support I felt a pang of guilt. I forgot to mention my brilliant speech therapist who visits me every few weeks and has been an immense support. I suppose GPs are too busy to offer much direct support but mine have tried their best by focusing on blood pressure. Through the internet there’s now a whole range of resources — such as this forum. The NHS could do better I am sure but I have always held to the view that I am responsible for my health. Anyway there’s a much larger set of questions to resolve about how patients and professionals can actively cooperate to set up support groups of various kinds. This forum is doing a pretty good job.
I’ve been left with various things I cant-do how about you? You are so young bless you sorry I’ve rambled on I’m nearly 60 kindest regards micky
