Helpful Youtube channel

I’ve been fed up with the constant negativity from medical staff (us humans also need positivity and hope) since my mum hit the 3-month ‘mark’ at hospital (massive stroke in February). I’ve been searching YouTube for more info about how we as a family can support her ongoing recovery post-discharge.

This video is interesting - it’s about the months of recovery following the first few weeks (I was been told repeatedly it wasn’t looking good for my mum, then she started to rally after repeated set backs).

I appreciate it’s important to manage family members’ expectations but where there’s a chance there’s hope. And we need to pass that on to the patient to bolster their morale. So I was grateful to find this…although I’m not keen on the very YouTubey title of the video (all rather dramatic).

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@EMG72 Glad you found this video and Elyse has encouraged you. There are lots of very helpful videos on her channel. Another channel you’ll find helpful is this one:

https://youtube.com/@rehabhqofficial?si=MgRMZ9aBxP8pzKBN

Try not to be too disappointed by the negativity of medical staff. It happens, unfortunately. After discharge, a community physiotherapist kept telling me I only had a year to reach my new potential which I knew was hogwash. I told her about this wonderful forum where people are making progress years later and she looked at me in wonderment :laughing:
And anyway, I’m sure you’re seeing by now that this stroke journey is very up and down and all over the place. There are plenty of things you can do to help your mum and those videos will give you plenty of advice and information. I’m sure there’ll be others on this forum who will come forward with their own thoughts and ideas. Keep going. Keep reinforcing to your mum that progress can be made. Even tiny steps in the right direction are huge achievements that’ll bolster her confidence and help her to believe that she’s “got this”.

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It seems to be quite common that people are told you’ll only make progress for x period of time after that you’re stuck with what you’ve got. It may be that there is an optimum recovery period where we make the greatest progress the quickest but if we keep working at it then we can still improve it just takes longer & is slower.

Good on you & your mum for graaping the mettle and proving them wrong.

I was once told that where there’s life there’s hope & I do believe that.

Keep going. Good luck.

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I rather like this lady, Elyse Newland, and her channel, Post Stroke, she gives good advice. Another channel I enjoy very much is MindfullMoves with a great guide, Jen https://www.youtube.com/@MindFullMoves

A different sort of help comes from a full blown rehab course which is gold! Assembled by Arjan Kuipers link https://www.brain.rehab/ There’s a lot there, and it’s free!!

Good luck, Roland
ps. 20 months post stroke and making all the discoveries and breakthroughs now !!

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Ive suggested (many many months ago actually and multiple times since) that somebody collate all the YouTube channels that we use :slight_smile:

I suggested somebody else do it because I wanted to be inclusive of folk.
We’ve created several wiki posts that all can contribute to and inspired folk eg Kieran to do the same with the benefits post. How about somebody doing it with the theme of this thread?

It would be good if somebody created a wiki post with the useful YouTubes and podcasts that have been many referred to in the last couple of years.

Elyse and Tara get the lions a share of mentions but they are only two of several good ones. Even the stroke association plausibly deserve a mention for a few of their videos as does Different Strokes

In fact there’s a possible much wider initiative because there are blogs, books, tools, orthotics, 1 handed aids etc etc that if curated to findable sources would be sources of so much value to newcomers.

This was what I thought the community coordinator role that I applied for would have within its remit - but apparently not because they must have been in post because recruitment closed a long time ago…

Caio
Simon

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Thank you Tracey. Good for you thinking it was hogwash! Yes, I do believe positively plays a significant part and well done on sticking with it.

I do wonder whether the professionals need to stick to the ‘party line’ to protect themselves and their organisations. But it shouldn’t be a surprise that people can continue to recover…

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Great idea. I’m happy to start collating links. I’m becoming rather passionate about people seeing this kind of content as it’s very easy to become institutionalised and closed off from ‘fresh’ information. I’ll be showing videos to my mum now she’s in a more stable condition and more able to take in information.

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There’s actually really rich capabilities within the discourse forum software.

If you create a post and use the three dots below it to make it a wiki then anybody can edit it.

If you make it bit of structure people can put additional elements in the right place.

What we did with the SWP

And that has a link to some notes near the start but I’m happy to provide guidance too :slight_smile:

If I start the wiki then if it has my name on it as author and several of the resources already do like the welcome post which is why I’ve been suggesting others might like to pitch in so that these are products of the community for the community :slight_smile:

Caio
Simon

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Thanks Simon. Appreciate your guidance but it’s more work then I’d realised sadly. I work full time while supporting my mum through her recovery, so I’m very short om time. I hope someone else can pick this up though :pray:t5:

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Hi
Stroke survivor here .I had mine on 31 st october 2009 so I can perhaps give a longer perspective on improvement.
In my case I had a blood clot pass up the vertebral artery to a part of my brain that affects eyesight,balance ,fine detail ,and nimble use of fingers .
That damage is permanent so I have some loss of left peripheral visual field,some loss of balance,my handwriting is not neat and I sometimes drop small things .
What has improved over time is my balance which is better but not perfect.
Everything else that has improved is due to adaptation and concentration .
eg I scan constantly to check the left periphery ,I write carefully or type and edit mistakes,I am careful to grip things firmly etc.
Like everybody I struggled initially and probably had a loss of confidence .
You can improve and It may take a long time but believe me it is possible.
best wishes on your journey
Tony

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As with the reply from ‘Tony’ my stroke was 9 yrs ago this autumn - I am still improving so keep at it and best of luck, for want of a better expression I do my best to enjoy the ride :slight_smile:

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Great stories @tony_cave @pjb :blush: Well flippin’ done to you both.

My mum is 77 and is going to be discharged home. So I know she probably won’t be able to recover as much as you both (we’ve been told she won’t make much more of the recovery due to her massive stroke). However, it’d be amazing to get her standing or even slow walking with a zimmer frame. She’s had a very tough journey so far - infections have hampered her recovery.

But I find hope and support by watching videos for advice.

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That is what they call a self-fulfilling prophecy. Walt Disney said whether you say you can or you can’t you are correct.

Repeat and reinforce with your mum that " effort always leads to capability gain" and there’s a very real prospect that she will make good progress - That doesn’t necessarily mean walking but sit to stand is a useful capability.

Regrettably they keep dumbing this form down so the Red Group Exercise videos that were in the menus have to be hunted for now,.

They’re here

https://www.stroke.org.uk/life-after/exercise/red

I wouldn’t say they are the best but they are a start. When your mum is ready search for Amber exercises and maybe even Green eventually

Caio
Simon

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Thank you, I’ll take a look. Still,once weekly physio isnt enough :pensive:

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Once weekly physio isn’t enough but you can practice in-between those sessions which will help greatly. As Simon has said uf your mum is determined she can improve & how great would it be to prove the medics wrong.

Hope her return home goes smoothly & doesn’t bring you too many challenges.

Best wishes

Ann

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:+1: thank you for the comment and best of luck with the journey…

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Indeed! Right now she can’t stand entirely on her own thiugh so I foresee a lot of DIY physio happening!

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