I like to to share positive news as well as ask for advice here, as I know how helpful it is to read about others’ journeys.
As some of you lovely people know my mum had a huge stroke just over a year ago, and she went through utter hell and has had multiple hospital admissions with aspiration pneumonia. But this week she had a great physio session - she’s been very slowly rebuilding her strength after regressing last September - very limited NHS rehab has been available to her - and we’re seeing it paying off. We hope to get her back to standing up soon.
She’s been subscribed iron supplements and one of her meds was reduced the last time she was hospitalised in Feb/March (I pushed hard for a wide sweeping review) and it’s basically got rid of her fatigue, which has changed the game and her aphasia/ apraxia is improving.
Then yesterday she had a long anticipated swallow assessment at home - all went well and she couldn’t get enough of the strawberry yoghurt after being nil by mouth/ PEG fed for a year. The expression of pure joy on her face…!
Her SLT is happy to refer her for an xray assessment (keeping everything crossed for her).
Her self-management of her secretions is massively better, and her lung capacity (which of course helps her lungs to deal with secretions) is improving well. Her private physios are very pleased with her.
We’re seeing more movement returning to her stroke limbs too.
So, the stroke ward’s ‘assessments’ have all be wrong. We suspected they were biased against my mum, and we are seeing evidence of that.
@EMG72 that is so great to read. Am so pleased your mum is now making progress. It seems ahe has come a long way already & sounds like she will come much further too.
Well done to you for persisting & well done to your mum for proving them all wrong.
Hope the PEG can be removed as that will make a massive difference.
Keep with it.
For swallow reflex to take so long is unusual, afaik. It’s a huge relief. Dribbling will continue for a while - having tissues permanently on hand became a thing for us.
Absolutely fantastic news! So pleased mum is progressing and you should not underestimate the impact you are having in helping and pushing too, stroke affects is all in many ways.
Looking forward to hearing the next steps on the tracker journey.
That’s an amazing achievement. Well done both of you Your Mum sounds like a strong, determined lady who must be very proud to have you fighting her corner.
I hope having the PEG removed goes well and that she continues to prove them all wrong and continues to make progress.
Happy Mother’s Day to both of you, have a lovely day.
Best wishes and regards and Thank You for sharing your great news.
I’m so glad your mum is recovering now.
I hope you don’t mind me asking how old is your mum.
My mum suffered a major stroke 9 days ago and am trying to find out all I can
Thank you
@Nicola07 Hi & welcome to the community. Sorry to hear of your mum’s stroke. If you have any specific questions then ask away as there is usually someone who can help. At 9 dayspost steoke I am sure it is all a bit of a blur right now..
I have lots of questions but need to try and get them
straight in my head.
I have looked at a few topics and I’m very glad I found this forum as I think it’s going to be really helpful
Glad you’re finding the forum useful so far. There is a lot of useful info on here from people who are living with stroke every day whether as the individual who had the stroke or a family member dealing with the fall out ftom it all. It really does affect everyone.
At 9 days you’ll be trying to take it all in & your mum will likely be needing lots of rest whilst her brain is starting its recovery work.
Hello - welcome to this fantastic community and so sorry to hear about your mum.
Please feel free to read my posts - they’re not all that comfortable to read as it has been a very tough journey indeed. At the moment, my mum’s in a dip and is suffering ongoing lung infections due to the issues with her swallow and possible reflux due to her PEG (she’s nil by mouth). Without this complication I’m pretty sure she’d be eating, walking and talking again by now. She’s got the fierceness within her that’s for sure.
There’s so much I could share with you now, but read through my posts and @ManjiB’s posts. And @DavidHearnden’s (stroke survivor and social worker dedicated to supporting stroke community) posts/ replies.
Also, where are you based? Local knowledge is really important when it comes to services.
Get rest, ask lots and lots of questions. Don’t be afraid of challenging medical staff either. Some of them are not supportive.
I’d also reach out to a hospital social worker, to find out how they can help. They may only get involved upon discharge, but discharge might be complex - so I’d recommend picking their brains so you are fully armed with knowledge. I wish I’d known that - things probably would’ve been better for my mum.
Hello Nickie - Welcome to the community @Nicola07.
I am pleased you have found us and I hope you will get as much help and support as needed to take you forward on the journey that you face with your Mum
I note you have had some response from some very knowledgeable members and you’ve done some reading on this forum. For that reason, I will keep this short. Both @EMG72 and myself have been through similar experiences with our Mums being in the 80s and 90s. Due to their ages both have been victims of ageism, but despite that they have shown what is possible. All things considered both are doing remarkably well and they continue to keep up their efforts.
Until we know more, we cannot go into specifics for your Mum, but the more you are prepared and the more information you have the better you will be placed to give your Mum the best post-stroke care she can get.
Beware, that everyone is different and so do not assume anything - know what your Mum is capable of. If she is able to communicate ask her if not go by what you know about her.
Do not accept what anyone says unless you agree and it makes sense. Always be ready to push back.
Do not be surprised by anything (good or bad)!!!
If you haven’t thought about it, you might need to start thinking
Where Mum will be cared for (her wish/your wish vs practicalities)
What needs to be in place to support her care needs
How much help does Mum need? Can she make her own decisions?
Is there a Lasting Power of Attorney (LPA) in place (if needed)? Also is there a will in place?
Who amongst family and friends might be able to help?
Will financial help be required?
These are just starters.
Nine days into the stroke:
Where is Mum now?
What is the prognosis?
What is the current state of affairs with regards to how the post-care is seen and is being planned by the consultants?
Who is your contact for information?
Are you being proactively been updated on Mum’s condition?
Has any expectation been set? Major stroke can mean many things and it the outcome depends on the individual and so it is important to know what the initial prognosis is. Note:The initial prognosis is can sometimes be a finger in the air thing and has been proven to be wrong on many occasions - members on this forum will attest to that. So don’t get hung up on that one way or the other.
I am afraid I have gone on much more than I had intended to.
I finish by saying, this journey is unique to you and your Mum. What others offer is THEIR experiences and knowledge and of course they will be similarities and this will help, but always look at your personal circumstances.
