My experience with stroke

Hey everyone - another noobie here who had a stroke at the age of 44 on 2nd January this year.

Rather frustratingly, no one really knows why it happened. One minute I was helping my daughter with her homework, the next I had double vision, and then finally a paramedic was banging a hole in the wall on the way to getting me into the ambulance.

Things went father downhill when I developed sepsis and pneumonia on my lungs meaning that I was intubated and put into ICU and placed in a coma for around 10 days . Clearly, I don’t remember much of this but my wife (who has been amazing all the way through this!) was called to the hospital late at night on a number of occasions out of fear that I might not make the next morning.

Since then, I spent another five weeks in ICU, had a Trachaeostimy (finally out last week) and am in dedicated rehab unit trying to work on the restrictions around walking, talking and swallowing that the Stroke brought me.

I’ve been in care (one way or another) for almost four months now and I’m just champing at the bit to get home to my family. Before that can happen, though, I need to learn to walk and swallow again. Somehow the swallowing feels the most daunting task: if I keep doing my physio exercisers, then I feel that I’ll be strong enough to walk out of here. Being able to swallow/eat/drink properly again is something different. The exercises seem much less guaranteed.

Anyway, I think I’ve gone on long enough.This forum look like a great place so I’m looking forward to getting to know some of you better.å

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Hi and welcome to our forum. Sorry you have been hit by a stroke at the age of 44. WOW that is some medical history. We are a merry band of stroke survivors always available with some words of wisdom and advice. Feel free to ask lots of questions or have a rant if you feel it necessary.

Another website you may find useful is Different Strokes a UK charity providing a unique service to younger stroke survivors differentstrokes.co.uk

Look forward to hearing from you
Regards Sue

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@MortimerJazz thank you for sharing your story. You’ve been through the mill a bit haven’t you. You seem to have the right determination though & that will help you get far. I’m not sure about Swallowing exercises. I imagine it is one of the more difficult things to get working properly again & must be one of the most frustrating too. I assume you have been referred to a speech & language therapist? They can hive you exercises to do to improve your swallowing.
Good luck on your recovery journey.
Best wishes.

Ann x

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Thanks very much for the link @Susan_Jane - I’ll definitely check it out!

In fact, thanks to you all got the warm welcome - it’s really appreciated!

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Welcome from a fellow stroke survivor’s forum (SS) and Wow, you’ve certainly been put through the mill. But you are coming out the other side now and on you’re on the road to recovery and that’s good news! So stay positive and don’t slack with the therapy, take all you can get.

Your recovery has merely been stalled by that stint in ICU and coma, speech and swallowing has also been hindered by the trachi. That’s a lot work you have for the brain to handle, you’ve given it a lot of spinning plates for it to juggle there, so try and be patient it, give it plenty of rest to process it’s data :wink:

I had similar issues with the lack of speech, and swallowing…choking, hacking, coughing and spluttering all over the replace. The constant feel of a huge obstruction down the back of your throat, I feel for you.

Good news is it should, hopefully, recover over the next months. For me it took a couple months for the swallowing to return to normal, though still have to be careful about it. And I’m over 2 years post stroke.

Do you do any throat flexion exercise. It’s hard for me to describe and just something I found helped me, not an exercise from therapy. I’d just keep my lips closed but mouth wide open, whilst I’d flex the muscles at the back of tongue, throat and adams apple to sort squeeze it and push the adams apple downward to open up the throat a bit. Like I said, it’s hard to describe but helped work for me. And now I’m doing as I try to describe it :laughing:

Good luck on your road to recovery and getting home to your family :smile:

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Hi
I think we’ve shared posts in another thread/ topic. Either way welcome :slight_smile:

As well as different strokes web go find their Facebook group - it’s like this but different software great support, the wisdom of crowds, a space to vent & celebrate. You can’t have too many sources of help. If you post there with specifics like swallowing it’s likely Tom will reply with a gazilion links to help

Are Your family getting support? Your wife will have a lot of needs she maybe hasn’t paused to recognise. Mine runs a fortnightly wed am zoom meet for carers 1030 on https://bit.ly/StrokeCarersCafe so today then 12th Apr (theres a StrokeWarriors one ever other thu if you want details we chat & you could type! &| croak? Or just listen !! We are patient :slight_smile:

There are many folk who have gone from full locked in syndrome to talking and walking so the path is well trodden. You have to work at it. Some dogged determination when the stars align of mood, sleep, etc. Imho you have to adapt what the ot/pt imagine is helpful to what resonates with you. ANY effort has a pay off down the line but focussing on that is an act of faith - it is worthwhile. Lying down muscle control exercises just before sleeping seems to me an effective effort (and helps fall asleep). Just ’ telling’ muscles to tense relax with out having to see movement was my first effort, then a tremble then tiny movements then bigger then stronger - lots of road to travel

Relationships will be different. put as much effort or maybe more into them as your physical.

A last 2¢. Don’t fixate on “recovery” instead make the very best use of the new you & yours, gain capability and exploit it together don’t lamented a future that was never to be

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Welcome to the forum @MortimerJazz . I’m sure you will find lots of helpful and friendly advice here.

I look forward to hearing about your progress.

Lots of work but try to stay positive and you will improve

All the best

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You’ve had it rough, Mortimer
I hope you pick up and continue to make progress.
My stroke was last September, but the difficulties really hit hard in January.
Every stroke is different, and we all have to find our own way back to stability.
So much is simply not understood ; I guess every brain is different ; and thus every recovery.
Good luck, and really hope you recover … ciao Roland

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You are doing amazingly well considering everything you have been through. I hope you are well enough to go home very soon. Be kind to yourself.

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Hi
I also had a stroke due to an artery splitting in my neck. I was in a career in child protection in a senior school.
I think having to deal with a stroke is exceptionally difficult but doable. It takes time and patience and it’s about congratulating yourself on the little things you achieve and trying not to focus on what you can’t ,yet, do.
Good luck with your recovery! :kissing_heart:

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