Lost for words…

@MattJC just popping by yo say hi & welcome to the community. You sound like you’re making some good progress albeit you’d like more…i too have a walking stick. Yay. It helps keep me upright so happy to have it.

You’ll find many friendly people on here & sounds like you will have some useful advice for others too.

Look forward to seeing you around the forum as & when you want to.

Best wishes

Ann

3 Likes

I spent all of my tokens! Who knew!

Anyway, In my past life I was a Creative Producer/Director specialising in directing short films like “innocent ignorance” which is all about Trans people and thought provoking, but since my stroke I use AI avatar to produce a catalogue within subjects around Agile 2 etc. My niche though is all about the past, the present, and the future.

This film was mine though. It’s real and raw and I produced it end to end with little time to perfect it. And, yes, all the talent featured gave me permission to share. Another thing I’d spent 26hrs over a week to record myself because my voice lets me down before I’d even finished the sentence!

It’s a tall order, 19mins! Watch this when you have time.

https://vimeo.com/1012834335/0517949797

5 Likes

Hello Matt, nice to meet you. :blush:

You’ve come to the right place. I had my stroke in February, and this forum quite honestly keeps me afloat some days. :blush:

3 Likes

Hello you! Nice to meet you too!

3 Likes

I too amover 3 years post-stroke and as you day it’s a journey. I too have drop foot which is increasingly becoming a problem, I’m also currently struggling with the wearer along with many people.

My life has completely changed but I’ve recently started sketching.
I h is tricky with only having the use of one and a half hands and failing eyesight but I try. I read, from time to time I dabble in family history and join in with some Stroke Association activities. Do exercises and generally plod on.
However I,m cheerful and just try to make the best of things and don.t look back,
That doesn’t feel very helpful but make of it what you will!

5 Likes

@Georgie2021 we are together in spirit and our reality. Thank you for your kindness. You have 1/2 a hand more than me you devil you!

I’m still learning how to write with my left hand but it’s tricky! I am ambidextrous with computers and tools, anything but writing - it’s awful. Alas, with my voice as well……

But, I’m usually not cheerful (that’s not me) but happy and centred and I’m ok to look back and remember the good times without the guilt. I’m looking forward with hope but not I’m all better mentality, more like new experiences to explore.

3 Likes

I enjoyed your film, Matt, I often muse on the consequences of other injuries compared to stroke, and how stroke, for many of us, becomes the work in progress anew.

2 Likes

Hello @MattJC - I am following your story with keen interest as it is perhaps one of the [even] more remarkable stories shared on this forum.

I note you seem to have made [relatively] speaking remarkable progress and it seems to be from what you are saying you are at the top end of being your former self apart from the speech/voice. Having read your posts and seen your video I am wondering how it is you managed to do what you have done in 3 years.

As a carer for someone who was in a similar situation to you when they had their stroke, I note we have struggled despite our best efforts to get anywhere near levels you have achieved. In fact, my Mum is yet to stand up.

I wonder if you might be able to shed any light on what it is you did that enabled you to progress as you have yet there are many like my Mum and others on this forum who are still trying to get off the ground.

I am totally aware we are all different and also it is not a level playing field, but I am always amazed how difficult it is for [the vast majority?] to achieve the level of recovery you have done in a relatively short period of time and also possibly from a worse starting point than most.

I really would love to understand why it is my Mum is yet to stand up and what we might do to enable her to do even just that small thing?

I shall await with anticipation the secret of your success :slight_smile:

Namaste|
:pray:

3 Likes

@MattJC
Hi and welcome thankyou for sharing your film link, I really enjoyed it and well done on your recovery and adapting your speech. This forum helps us as survivors see how much we all share in common but it helps us see how each stroke effects us individually.

3 Likes

@ManjiB I didn’t offend you or anybody who watched that video? If it was, I’ll take it down immediately and say I’m really sorry!

That’s the first hint - I’m paranoid about everybody else’s feelings, post-stroke, not like the old me..

The film, and my posts/reply’s were just my drivel trying to get a handle on other people’s “journey” - if I’m behind, in front, on a par or is it individual?

I don’t know anyone who had a stroke, despite my inability to communicate but forums.

Also, that film was, and broadly a success, for “normal people” I.e. didn’t have a stroke/heart disease etc and to wake them up to the world that is full of opportunities that hampers stroke survivors with their growing list of ailments to get a job, something meaningful. Not survivors or their carers.

Anyway, your questions/observations

I have severe aphasia/dysphasia which is why it took SO long to produce that film.

My healing prowess is slow, dead slow despite my addiction to read, write and sing perfectly again, my medical fraternity wants me to stand up on my own, walk to the end of the bed, then (after 3 weeks), walk to the other bed etc it’s laborious

I was in hospital for 7.5weeks and they did everything to steady my body so I can leave, then my only goal was doing the “oh, Vienna”. Even now, 3 years later, I can only do the “oh…” followed by “bapbababap” - nonsense!

So, the answer for your question is I don’t really know - I went home, using my walking stick, despite those exercises it’s never improved, maybe a small percentage point (right leg). I did have some therapy at the other hospital, where it’s more like techniques for walking, turn myself about, walking up 1 step etc. it’s helps. But I was already walking, of a fashion.

The only sentiment, not directly at you, it’s the mentality not the body - remember this. If you want to stand up but can’t (yet), or in my case making a film that affects so many people, believe it, hope it, and a positive mental attitude you can move that mountain one pebble at a time.

Hope that helps.

M

P.S. I’m really not good at navigating/posting/replying forums - my language is terrible but, I guess, it’s improving!

4 Likes

@Rups when you know the stroke is higher than cancer, heart attack for death statistics, it’s a real eye opener to the masses and that measure means that the government invested a small amount in that FAST advert but not the aftermath and the charity’s etc.

It’s like everybody else lean on forgetting the real pain and long road to the new me for having a Stroke!

M

2 Likes

I guess stroke is quite confronting to many as it exposes our mortality, sense of identity and capacity as humans. Often in films, if a stroke occurs to a character, it happens to a villain, I’ve started noticing this more now since having had one myself.

3 Likes

Hi Matt - I was not offended and have watched the video more than once :slight_smile:

I am here on this forum to learn from stroke survivors things they have done that helped them and which might help my Mum. As she is non-verbal due to her aphasia, I am looking for “advocates” who can speak on her behalf and I have been lucky to have found a few here in this forum. Their experiences and willingness to share with me have helped :slight_smile:

I was very impressed by your post and felt I might learn something from you that I might then be able to use to help my Mum.

I am sorry if I triggered your paranoia with my response and confirm you did not in any way hurt my feelings or cause hurt.

I appreciate you taking time to respond and to share your experiences. Please continue to do so as I am sure many are already benefitting from having you here and more will soon follow :slight_smile:

Take care.

:pray:

2 Likes

I Too have found that my aneurysm has forced me to consider my mortality.I do spend many hours a day wondering why I survived only to live in a nursing home with a rather pointless life!

1 Like

@ManjiB thank you for your warm spirit!

I don’t understand how my body and voice and inner soul works, but I believe it’s always the mind first, the rest of them are second. I might be wrong, only time will tell, but I went back to work after 6 months still having speech therapy AND practicing typing the messages because it’s the only way to communicate but, again, I was on the slow path still practicing the messages, read it, delete that version, “is it ‘say’, ‘saying’, or ‘said’, leave it for bit etc, even today! But I believe I can do better, engage my mind first and then the action second.

It’s work in progress and it’s so repetitive but one day, I hope, to stand on the stage again and waffle in to the mic my well researched spell to capture the hearts and minds of the audience.

It’s not relevant to the stoke brigade, but it is relevant to me. I recorded this 9 years ago over two days and it’s still in use today for the client. This is my goal, especially the last line….

Anyway, I’ll have a think on what to share that is relevant for you.

M

3 Likes

How wonderful @mattjc that you have a pre-stroke video of you speaking like that I Can’t be sure as I’m not a SALT just a lowly biologist but watching that will help your brain emulate your speech facial expressions etc 🜁

2 Likes

I hope so, though it is a slow pathway to do that again. Mind first, action second :folded_hands:

2 Likes

But did you know, my right brain is full of harmony and music which is ok. I was taught that little nuggets by my speech therapist!

2 Likes

Hi Matt

Well written and composed, just to say keep going forward, it’s slow but you will get there with determination. When I say “there”, the actual destination is different for us all but the journey is similar and it’s hard at times but rewarding.

This is a great forum to talk, laugh and vent on, without judgement, so here’s a big welcome and wishing you all the best going forward.

Cheers Paul

3 Likes

Hello @Huggybear, you’ve gone through the mill a bit and then some. Huggy back to you!

M

1 Like