For those of you following our story, this is to close the previous chapter which you can refresh yourself using the below link if you so wish.
I am happy to inform you that exactly one month after coming home again following possibly the worst month in her post-stroke life and that which led to her being admitted to A&E and an in patient stint because she had seizures, Mum has been recovering steadily at home.
Today, one month in she is pretty close to being where she was at before the incident in November/December of last year.
The first two weeks after coming home were not the best and we had concerns about how well she would recover, but we needn’t have worried. She has done it again - she was knocked down, big time, but she has just got up again and by golly it looks as she is going to be stronger than ever. How she does it, I do not know. All I know she keeps doing it.
We have been treading carefully but I can safely say within another week it will be all systems go!!
Thank you all for your support during this time and I am sure Mum has appreciated the vibes coming from her supporters. Thanking you on behalf of Mum and wishing you the very best.
And so the next chapter begins. What will she do next?
That’s excellent news ManjiB. Please give my very best wishes to your Mum. I am sure that all your support and battling for her made all the difference I don’t think you can underestimate that. And that of all her family.
I hope that she and all of you can relax a bit now. What a difference love makes……..
As far as we can tell, Mum’s seizures were/are manageable. I can say this with hindsight, but also this forum can be used as your foresight. In other words if I had known that Mum being on BP lowering meds would cause her minerals to go out of balance and lead to a seizure I would have managed that. We could have monitored the mineral levels (in fact the GP should have done it when checking her bloods) and the low sodium level would have been spotted and corrected and so her first set of seizures post-stroke would not have happened. I say this with as much certainty as you can but obviously in life …
After the first seizures two things were done
Stopped BP lowering meds - not needed as BP was normal or had stabilised and in fact had only become abnormal (if indeed it was) during the first stay in hospital which was horrendous but we won’t dwell on that
We added, on recommendation of Mum’s (rather excellent) community dietician, half a teaspoon of table salt to keep sodium levels normal. My sister has taken this to the extreme by weighing exactly 9g of salt and adding it to Mum’s drinking water - my sister like my Mum is a one-off
The above two actions stopped the seizures happening via that mechanism. After that Mum had nearly 5 years of no medical problems and no seizures.
Her latest seizures were caused by her stomach lining being damaged or stomach ulcers through uncontrolled use of Asprin (again this has been documented in my previous posts in this series and so I won’t repeat).
So again, with hindsight I can say we should have acted sooner when Mum wasn’t sleeping at night and it was obvious (hindsight) that something was wrong as Mum doesn’t complain or ask for help unless it is serious. This was a big mistake and I still have mares about this, but I can’t beat myself up because that won’t do any good. All I can do is learn from that and from now on I will never “ignore” any behaviour out of the norm.
The foresight here is monitor and watch effect of long term use of medication and do not ignore symptoms.
Massive lessons learnt, and pleased to have got through this, thanks in the main to Mum being such a remarkable person.
So Jenny, I am not suggest they won’t happen again, but they will not happen for the reasons above. Mum will never be allowed to go one month without sleep and her minerals will always be under check.
..and this is why : The glymphatic system is the brain’s unique waste clearance system. Think of it as the brain’s internal “plumbing” or “sewage system,” working primarily while you sleep to wash away toxic metabolic waste products.
The glymphatic system is powerfully active during sleep, and crucial for long-term brain health and preventing neurodegeneration. It provides a compelling biological reason for the age-old advice: “Get a good night’s sleep.”
Thankfully she is now getting plenty of good quality sleep as we are trying not too disturb her sleep by doing things to “schedule”. Until now we have given in and followed the care plan to the letter but now the focus is on what Mum wants and a huge bonus is we now understand her better having learnt to try to interpret her non-verbal requests. Even better is that since the latest knock-back and her ability to come back stronger each time, it looks like her communication has improved - hopefully this is not just wishful thinking on our part.
Now I think all of us will be getting our quota of sleep
It’s OK Jenny - there is no harm in repeating things and sometimes talking about it again helps.
Also, this forum is open to everyone and oftentimes not everyone will read every post or they will yump in in the middle of a chat and so may miss things.
It’s really OK and not necessary to apologise. I myself repeat things when I feel it may benefit new members or members who are catching up etc.
Yes it was you I was thinking of. Of course new members may not have read the post before. I do hope your mum doesn’t have the seizures problem. We chatted at the time I had mastered what is quite a simple skill of posting on this group.
I have just answered another post. I started a new post on having a poor memory I got some useful replies. I thought you were replying to that. Oh well I won’t worry!
Hey Jenny - don’t worry. You’re doing really well and I (no one) minds if you repeat things, post on the wrong thread or whatever. If anything, it reminds me and everyone that we are all human
We are here to support and encourage each other in any way we can.
I personally love it when people read my posts and reply to them. It gives me a buzz and helps to keep me going.
We’re all living in mad and bad times and the stroke infliction is one of the worst things we have to cope with. In the main, I think we all do amazingly well
Fear not, Mum will not have any more seizures and she will not be troubled by anything that we (and Mother Nature) cannot handle. We are truly blessed
Have a lovely day
P.S. Did you manage to join Bobbi’s chat group on WhatsApp? I think you will enjoy that Also Bobbi and Roland are setting up video conferencing and so these will be more new skills for you to master. You are truly on your way to being a super Silver Surfer, though I am not sure of they (Silver Surfers) have evolved into something new - I am a bit of a tech dinosaur myself and only just gave up my 3G mobile phone as it couldn’t handle the new 5G text messages.
So pleased for you all that you are finally over this hurdle, especially for your mum She certainly is a fighter
Have you ever considered teaching yourselves sign language, purely as a pastime. You all may be able to expand on your non verbal communications with your mum. There are online videos for this you could have a look at. I know a few in my aphasia group who have done this with there families Then out of habit they still use it in the meetings and the rest of us haven’t a clue what they’re saying
We’ve all been there where you are now. Perseverance is the key to eventually understanding and getting it right. You just keep going, there aren’t any protocols on here when you’re new to both your stroke and the forum. You’ll eventually get the hang of it. The most important thing is, you are on here, getting what you need from the forum by any way you can. And you are sharing your wisdom and experience through your own stroke story, and everyone is grateful for that. That’s what’s important! The rest is just window dressing and will be learnt in time over use. I’m sure we can all recall the triumph of our first post, because it is a good sign that something has improved in your brain to manage to respond to any post or even create a new one. It’s all good, keep going
I guess I haven’t considered it as I haven’t done it and don’t recall trying it - I often try [sometimes very enthusiastically] things and then stop [often abruptly]. It’s weird as I don’t think I’ve got short attention span disorder but maybe I have.
Being on this forum is one of the very few things that I have done for longer than I might have expected. Thinking about it, I also started using this forum and then didn’t use it for a very long time before stumbling back in just over a year ago and then since that time I have been hooked. I spend far too much time on here than can be good for me (I think Gnasher said his consultant advised not to spend too much time playing games as it’s good for you in moderation, which of course is true for most things in life) and maybe that is why I haven’t learnt sign language.
OK, I think I will do it now. I will commit to a few minutes a day learning sign language
- my sister like my Mum is a one-off 
So pleased for you all that you are finally over this hurdle, especially for your mum 
She certainly is a fighter 
