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Simon

Hello 🙂
i’ll get the ball rolling by saying I’m Simon. I’m one of the folk building this site (if you want a facility then just ask!).

I had a Lacuna Ischemic Stroke in Oct/Nov 2020 - Covid lockdown. So not much therapy.

I’ve been seeking to improve my and ‘our lot’ since.
This site is a reaction to how resistant some Orgs are to helping with that aim (not looking at anything Purple!

I’m always working to improve my right hand as its the most affected part of me now.
🙂

Rups

Simon Not to be a pedant but announcements needs correcting. Lovey to be here, hope you are well Simon 😀

How do I channel this through the Discord app?

Pando

Hello, I’m Roland
Stroke Survivor, 58 years old when I suffered a severe (26/42 on the NIH scale) hemorrhagic stroke in September 2022. The world is still here, post stroke, just a different world than the one I knew before. I was a professional violinist, albeit now teaching, which I still do, but most of the time I dedicate to my stroke recovery. Mobility is still limited, though improving, so much so that in October 2024 one fine day I walked a mile. The struggles and challenges that I have faced have led me on a quest for healing therapies whether alternative or conventional, whether Eastern or Western medicine; I embrace any and all things that benefit. I’m passionate about my recovery and I’m well supported by a loving wife, a team of experts, including a retired Radiologist, a Doctor of Traditional Chinese Medicine, a Psychologist, a Physiotherapist, and support groups such as Simon’s SIG. Let’s have some great discussions !!

DeAnn

I’m not sure if I’m doing this correctly but we can learn together. Which is very possibly much of the point of being here. I am DeAnn, and I am very excited to be here. Seems silly to say that since having strokes is how I got here. However as rough as having strokes has been there has been good in it as well. One of those things is knowing just how strong I truly am to still be actually here and occasionally useful. Another one is that I have met so many wonderful people who helped me on this journey and those people are here. So much has happened since my strokes in early August 2021 it would take hours to tell the story. So for now I will say my most particular interest here is in the mental and emotional health of fellow humans after stroke. I will make myself available as often as possible to speak with anyone who could use an ear. I am interested in all the issues, but that is the one that has helped me more than anything else It’s particular group of people.

Simon

DeAnn
there isn’t a right way in any sense that would make others wrong ways. Well leave judging to others without the understanding of the unseen needs of PS life.

🤗

DeAnn

There are some people here new to me and I would like to welcome you. I have just learned how to send a message. My brain is a little slow but I will keep trying until I get it. In the meantime thank you for coming and I hope you’ll find support, helpful tips, some answers and share some as well.

Simon

DeAnn
There will be more coming - I hope.

Thank you for your concern for others when you’ve challenges enough for several on your own - your presence is valuable and valued 🙂

🤗

Ian

So this is where everyone disappeared to. Glad to have found you. Now, 6+ years post-stroke, coming up to 64. I tried to get back to work but struggled. Then lockdowns and furlough came, which set me back. Finally, I was made redundant. So, I decided to call it a day and take early retirement. My biggest problem, like so many others, is the fatigue and the weight gain. But next year, I aim to conquer both!

Andrew

Ian Hi Ian,
Welcome to the group. There is life beyond 64, for I am 65! My photo was on that birthday a few months ago.

I will be formally retiring at the end of next month, although little will change immediately. At present I am 60% retired.

During the pandemic my experience was the opposite of a furlough. This involved 60 to 70 hours per week for months on end, and that may well have contributed to weight, the BP, the stress levels and eventually the stroke. At the time I referred amusingly to the workload as, get up, work, faceplant on the keyboard, sleep. Now even the keyboard shows signs of fatigue!

I haven’t conquered the neurofatigue yet, but I lost almost 3 stones in weight beween March and June this year, since the stroke. This was slowly and deliberately, in case folk are worried that it might be something more sinister. Happy to say how, for it turned out not to be a great problem, despite all the nay-sayers. It might be tricky to keep the tons down over the Christmas break, but I now know what works for me. I even tried some home-made lentil flatbreads at lunch: 64 Kcals for two versus 150ish for wheatgerm.

All the best. Andrew

MERRmaid

Gosh I’m so glad to find you all here. Today is the anniversary of my TIA, and it was a difficult day remembering how bad a year I’ve had mentally. Then I started to list the positive changes in my life over the last year, and one of them was finding a community of other people who know what it’s like to have had a stroke or a TIA. That’s why I’m here!!

My challenges are to rebuild my confidence, to deal with fatigue and to recover my mental health. Also, to provide support and encouragement for others wherever I can, and to spread the word about stroke because I knew absolutely NOTHING before it happened to me.

Andrew

MERRmaid TIAs and strokes vary so much. Some can be sort over and done with, so to speak, very quickly, while some take years. I still suffer from neurofatigue, right arm tremors, and balance issues, all the other issues now thankfully being relegated to the past. Life remains full of ifs: for example, if I were to say “life would be better without the balance issue”, then not only would I be incorrect, but such a sentiment is useless for this is currently not true. The real question is: what am I doing about it? We’re here to assist you with our experiences, and we welcome you in, to assist when we can and to stand with you when we can’t. So I’ll give acceptance to the balance issues, for now, and work towards its complete eradication. Welcome to the group.
I’ll find out at least part of how you feel on 5th January, the anniversary of my stroke.
Andrew

DeAnn

MERRmaid I am so glad you’re here. And please accept my apologies for being slow to reply. I have been a little unwell this week and on slow mode. As rough as this road often can be I hope you’re able to look back and see how much you have actually accomplished. I’m sure it’s so much more than you remember to give yourself credit for.

EmeraldEyes

Hi @Ian and @MERRmaid, welcome to our new home 😄 Hope you manage to get to grips with new site, its a new course of learning and with some mental acrobatics for us all. And it can be a little draining as struggle to get our heads around it all 😅 Take breaks, go away and come back to it, which is much what we advised to do with our stroke brains anyway.

Which brings me onto the subject of managing fatigue, it’s not always that you are physically fatigued, it’s more the brain taking in too much in one go. The brain gets over taxed, over stimulated and it shuts you down, much the as a toddler really. Demand too much of it, try getting it do what doesn’t to do, it gets stubborn, throws a tantrum, and before you know it, you can’t get it to a damn thing…even taking a nap can be battle 😆

If you don’t already know the Spoons Theory, have a read, it might help you with how you manage your fatigue.
Simply put, I wouldn’t do a 2hr workout in the gym and take a long walk on the same day as that would leave me with very few spoons to do much more like a bit of laundry, cook a meal.

https://stroke.logicalmodel.net/flarum/public/d/85-fatigue-spoons-theory/5

Ingo66

Hello all, I’m Mark and you can read about my stroke details by clicking on my profile picture.

Hopefully I’ll find time to join here frequently and get involved in discussions and offer advice/opinions based on my experiences.

DeAnn

So good to see you! I know your hands are full. Thankfully I don’t have to work. This particular project is a work of love to me, so I will be here as often as I am able. I hope to see you often as well.

Ingo66

Glad you and some of the the old SA regulars are here so I’ll be sure to keep checking in.

Ruthy

My pain went a bit crazy yesterday (level 8), it’s be nicely manageable all Christmas so it was a surprise and the exhaustion that’s accompanying it is bonkers I can barely keep my eyes open. The point of my post is to ask about itching - does anyone else get the ridiculous itching where your pain is, when the pain gets bad? It’s so itching I feel like scratching my skin off. It’s worse around my head, face and torso.CPSP

Nige

Ruthy unfortunately it seems Ruth that cpsp needs more letters, you could have n for numbness, I for itching, t for twisting, p for pulling, t tingling. It seems to be a pretty sizeable list of weird and never wonderful feelings. Even the pain seems to be outright pain, cold burning, sun burn, wetness,electrical etc etc.
After having a shower, I find it’s hard to get “dry”. Not that I am actually still wet but it feels like it. Very convincing.
Excessive body memory of and event/touch seems very common. Itching, it’s a itch you just can’t scratch, it’s not really on your leg or your arm. You might as well scratch your head !! 😁😁

DeAnn

Nige oh wow! You just hit my spot. The itching started before I knew about the strokes. I see a dermatologist for that. So far nothing seems to be helping it. Only my physical medicine physician has been able to understand that feeling of being wet when I am not. I have not talked to them about the tingling and numbness and cold because they kind of blew me off on those. They also did not understand The pulling sensations. Not quite like cramps although I get those as well from low potassium. Like someone is pulling My fingers and toes backwards using rubber bands. It’s more uncomfortable than painful. But what is painful are the stabbing pains I get. Sometimes they make sense because I will be touching something against my left side and not know it and eventually start feeling pain, look down and see that I’m pressed into the edge of a table or have my foot against the table leg. But other times I feel crazy because I will bump something at the top of my arm and feel it in my wrist or hit my wrist and feel it in my abdomen, or over the top of my ear. I don’t know why but the feeling is very real. It will bring tears to my eyes. I have no idea if that’s CPSP or my imagination or what in the world it is, But I’m afraid to mention it. They will think I’m nuts. I know you all already know I am. But they don’t and I’d like to keep it that way.

Simon

Nige
That’s significant

Nige

DeAnn We are unfortunately, in a situation where a number of the medical support teams have not come across or have any understanding of cpsp.
In the UK, a survey of the pain clinics, teams who should have visibility, their understanding was woeful.
The people we might talk to, expecting them to provide solutions for us, as they always have, can be out of their depth.
On the net, there are details about what it is, when it arises, some of the symptoms. That aspect seems fine.
There is nothing at all on what it is like after 12 months, 2 years. What is it like in real terms rather than theory. What percentage have it in mild form or severe. What does severe mean …..
Initially I thought, no info about it medium or long term. Does that mean no one survives beyond X months ? Clearly they do.
So if that information is not there, how do we expect the medical community to provide solutions? SA didn’t want to know. Who is going to promote the understanding of it ? No one it seems.

So itching, partial or more widespread numbness, twisting, pulling. You might as well be speaking a foreign language

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