@BernadetteC ouch that sounds mega painful. Really hope you mend quickly. Accepting our new abilities does feel a but like a bereavement. It’s trying to find the balance between trying things but not pushing too far. I imagine your granddaughter learnt a lesson that day too.
Look after yourself & get well soon. xx
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Bernadette, sympathy! 3 years & almost feel over cautious. Step outside, walker or walking stick. 100% focus. Can not be distracted, ie cars passing, noise, turning my head. Must stop to smile at someone.
Small grand kiddies visit, must just sit & watch. No chasing 
. If like me anything, on top of stroke, is massive. Heal well. David.
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Hi Bernadette, also interested, if like me , if falling, reflexes, brain just doesn’t work to protect yourself. Fall like sack of potatoes. Always warry of sitting on new chairs, prefer my walker chair. Been on bit of downer recently, ready to bounce back now. Good speaking David.
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Thankyou. I will sliw down a bit and bulk buy bubble wrap 
Ouch and bugger not what I said at the time though:face_with_hand_over_mouth:
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Thankyou,I will try to be more careful haha my nickname at school was crazy legs so I’m not holding out that much hope:crazy_face:take care
Thank you so much for taking the time to send me such a wonderfully detailed reply! You seem to be doing a wonderful job of looking after your mother.
I am particularly interested in your account of your strategy to reduce your mother’s seizures and will do some research / ask around. My husband seems to be having a seizure at c.6 week intervals and although he remembers nothing about a seizure, each time it takes several days for him to recover. Seizures now shorter but the medication certainly seems to make him very sleepy so poor quality of life.
As for physio, how did you go about sourcing a physio with strike expertise? Is it NHS or private?
As for a carers group, there haven’t been so many around though maybe coming back. I would be really interested in a stroke group - for him and for me - to exchange info with others going through similar. Such a lottery what one finds out!!
Hi @CarefulScot ,
Our strategy to reduce Mum’s seizures may have been accidental, but with the benefit of hindsight we believe that by stopping the amlodipine (BP lowering medication and adding 1/3 (third) teaspoon of salt to her water drink and not taking the anti-epileptic medication the net result has been no further seizures since we embarked on this regimen.
The stopping amlodipine advise was given to us when Mum was taken to hospital following a seizure. The consultant put her on some anti-epileptic medication but when we got home and reviewed this we decided against it as previously explained.
The salt advice was given to us by the HEN dietician and we believe this has served us well.
Mum’s seizures usually lasted between 5 minutes and 10 minutes and we thought they may have been triggered by Mum trying to send too many instructions from her brain to her body. But we cannot support that with any concrete proof. It’s just that Mum was trying hard to follow our instructions and maybe we were giving her too many instructions to quickly and her brain post-stroke does not have the same capacity it used to and struggles. We believe this condition has now improved and she is better able to understand what we are saying and respond accordingly.
Good luck with your research and I hope you will be able to help your husband to have fewer seizures and ideally eliminate them.
The medication that stroke survivors end up on often does result in poor quality of life, or at least it has been the case for Mum and for that reason we try to not take them unless absolutely necessary.
With Mum having been on a long term catheter and also being PEG fed, her body is not happy about these “foreign” objects and she ends up having infections which are then treated with anti-biotics and then with too many anti-biotics she ends up having diarrhoea! It’s a vicious circle 
.
Physio
I posted a request on the chartered society of physiotherapists The Chartered Society of Physiotherapy | The Chartered Society of Physiotherapy (csp.org.uk).
The stroke specialist physiotherapists were actually not able to help due the Mum’s poor mobility and other conditions but we chose to work with a general PT just help build Mum’s strength and muscle tone. NHS and Social services do not help provide PT for someone in Mum’s condition (she is classed as “bed bound”) as they require you to be mobile or so I have been told. Hence we are privately funding this.
Though we have registered with Carers group we can’t get out and be actively involved but we get updates via newsletters.
As with many things almost everything is indeed a lottery.
I hope this helps.
Best wishes – ManjiB.
Hi @Loshy,
Thanks for your support. I should let you know that Mum is being cared for by her two daughters and her son. I am actually her son (ManjiB) and my two sisters and brother-in-law help me look after Mum.
Normally, I would not bother to tell you that I am her son and not her daughter, but my experiences lead me to “correct” you. The reason for this is that as a male carer for my Mum, I have come across some problems and surprising “obstacles”.
It seems there are differing views on how much a male offspring should be “allowed” to do to care for his Mum. I have been told by some that I should not do personal care for Mum as it would make her uncomfortable. Yet, it is quite alright, or so it seems, for her to be treated by male doctors, PT’s and nurses etc. So to these, I ask is it better for Mum to get the care she needs in a timely manner from her son or for her to have to wait and suffer the indignity for the “politically” correct carers to help her?
I found this a strange attitude to have and especially since those “objecting” did not know my Mum and what her wishes were/are as to how she would like to be cared for in the event she ended up in the condition she is in.
It seems there is the political correctness or something whereby me being a carer for my Mum is seen as not appropriate.
At the same time, I have to say that I have also been complimented by others for the same reason, i.e. surprised that as a male offspring I am the primary carer for my Mum.
Just to be clear, myself, my sisters and my Mum are all very happy that we are doing what we are doing and also that together we have been able to get Mum much better quality of post-stroke care then she might otherwise have had.
At the end of the day we have to do what is right for us, regardless of what others may think.
I am sorry for “correcting” you, but I thought it important to let it be known sons also care for their Mums 
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Hi @Loshy,
I was not at all offended as I am sure it was not your intention - Lorraine, you have always been helpful and supportive on this forum, not just to me, but many others and I am sure we have all benefitted from your knowledge and experience.
I find it uncomfortable in recent times when I do so say certain things. Things that were perfectly normal and acceptable when I was growing up have now become offensive and you are constantly expected to suppress natural human emotions. For example, you can no longer raise your voice in anger, so how do you express your anger?
Being old fashioned, or just polite, I hold doors open for ladies as well as gentlemen, but now it seems some ladies take offence!
Anyway, that is a whole new topic and discussion that probably does not belong in this forum.
All I can say is we as a family are supporting each other as best as we can and we are managing outside “interference” as best as we can, but it’s not easy.
Onwards and upwards 
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@BernadetteC just checking to see how you are doing after your fall. Hope you are on the mend & have had no more mishaps.
Best wishes
Ann xx
Thankyou I will have to try a drop more water in my alcohol next time:face_with_head_bandage:
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Where are you?
I’m in Midlothian with at few in preson groups and I run an online one (I posted elsewhere) & my wife is reinsating the carers zoom ‘cafe’ every other wed 1st next week at 1030
Hi David, Im almost at my 1 year anniversary, I’ve made big improvements in the last year. don’t know what to expect in the second year, is there still progression?
Take care
Tricia
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Progress is ALWAYS possible if you work at the edge of capability.
Not necessarily continuously but continually & with variety
There are no plateaues in arrears, once reached they are new launching pads (after a short rest maybe)
When ‘professionals’ tell you otherwise they show they haven’t kept up with research or can’t sufficiently inspire those they’re charged with helping and need a way to relieve the dissonance
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Thanks David I need to be more positive I feel I am not making progress but the reality is that I am doing well and making life more normal for my family and wife in particular. I will keep pushing forward until my own picture of recovery has arrived, meanwhile I’m working on enjoying the day each one and every other day going forward. Love to you all we will get a lot better each day and find peace.
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