That’s great. Hope the 2nd session goes as well as the 1st one. She does seem very keen to try anything.
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As I write this, Mum is resting and she is very comfortable.
Yesterday she had the 6th physio session and it was probably her best effort yet. The physio really gave her a bit of a workout and she aced it.
This means she has now been getting this physio three times a week for the last two weeks and it seems to be benefitting her. There was one day when she seemed to tire out and offer resistance during the session and she may have struggled to get a good rest that night, but it could have been down to the hot weather or other condition such as bloating which does seem to bother her.
Our hope is that this physio will help her to get improved circulation from physical activity as well as helping with the bloating issue.
She also drinks a small amount of water by mouth and it seems this has now helped to trigger the burping “muscles” or whatever causes you to burp which again helps to release the trapped gas.
The physio is something we are doing off our own bat as there is no provision for this in her CHC care plan and the NHS has refused to entertain the idea that physical activity would be beneficial to the overall wellbeing of Mum.
We are pleased we finally managed to find a private neurophysio and we hope to see some long term benefits from adding this to Mum’s care plan. I should point out at this point that this does not come cheap and it is stretching us financially, but it is money well spent 
Further sessions are planned and we hope to do a review to see how much longer we can continue this and what changes in Mum’s wellbeing we might expect to see.
Namaste|
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It is great to hear that your mum’s physio sessions are going really well. It seems that despite her age she is still keen to try and get back some movement as best she can. She is bound to have an odd day where she doesn’t want to participate quite as much I think that’s natural for all of us. It sounds a bit like she’s getting some of her swallowing reflexes back to which must give you hope for her being able to eat normally again at some point. Even if that is just small amounts of certain foods. If you can get the bloating sorted out for her I am sure she’d be a lot more comfortable. her burping reflexes coming back may help with that a lot.
A review will be a good idea & then you can move forward in the best way for everyone.
Enjoy your weekend.
Ann
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This is just a quick update to say that Mum has now completed 9 physio sessions (3 days per week) and has been coping very well.
She does not tire very easily and shows no sign of fatigue.
The sessions are 1 hour long and pretty much continuous with short rest periods. The recovery day is used just for that and there is very light stretches/movements.
One slight issue is with the left shoulder which might be arthritic and causing some pain during the exercises and so Mum is not so keen when the left hand/arm are being exercised.
It might be to early to say, but the signs are good and she seems to be making progress in the right direction.
The physios have suggested we continue as we are doing for now and so that is what we will do.
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That all sounds really positive. Pleased to hear your mum is doing well and progress us being made.
The shoulder might be arthritic but have they considered a frozen shoulder (although I did read that they don’t happen once you reach 70 
).
Here’s to another successful session tomorrow.
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I am not sure if they have considered a frozen shoulder - they only mentioned arthritis or maybe it was me who mentioned it and they went along. I’ll ask them tomorrow.
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Update - 1 month since physio started
It is noe one month since we engaged a physiotherapist to work with Mum. Since she had the stroke, for one reason or other she has had very limited physiotherapy and as a result she is not as physically fit or mobile as she might have been if she had had regular physiotherapy.
We have taken it upon ourselves to do this because the NHS and the community care team are not willing to entertain the idea that Mum would benefit from physiotherapy.
It is now five weeks since her first session and she has been having 3 sessions a week lasting 1 hour. Despite her age and length of time being inactive, she has coped well with the session activities and the feedback from the PT has been positive and encouraging. Mum is aphasiac and so cannot speak but from her body language and the sounds she makes we feel she is comfortable with the activities and cooperates/responds to the PT.
She has never shown any signs of tiredness or fatigue until yesterday when for the first time she was offering resistance and stopping the PT from doing some of the activities. It is hard to say why this might be and why it has taken her 5 weeks to get to the stage when she is either fatigued or not interested in carrying on.
Mum is the sort of person who will try things and continue if she is happy, but if she decides something is not right for her or does not agree with her, she will put a stop to it.
She remained “unhappy” post session and right up to her 9pm feed. So it may be a red herring to point the finger to the PT session as the culprit. She is comfortable right now having been fed and watered and she has been freshened up and put to bed with Magnesium sleep spray massaged into her limbs. Hopefully, this will mean she has a good nights rest and will be suitably fresh tomorrow. PT resumes next Monday when we will know if there is a problem and she might be wanting to stop.
In the meantime, I did question the PT during the session as to why he thought she might be offering resistance/non-cooperation and I wasn’t convinced he knew. It further occurred to me that with Mum being aphasiac and not able to say she is tired/fatigued, he seemed blissfully unaware of the “stroke survivor fatigue”. This worries me a little as they sold themselves as neurophysios and so I would have thought they should be aware of the stroke survivor fatigue syndrome. I plan to discuss this with them next week and get their thoughts on how things have gone and where we go from here. The five weeks at three sessions a week is a lot more than the six weeks with one session a week from the NHS physio and so I do need understand what difference this is making and whether it is worth pursuing.
Watch this space and feel free to chip in with any advice you may have based on your own experiences.
Thank you.
It’s good night from me, and it’s good night from Mum 
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Regarding your mum getting fatigued, could it be the physio tried some new moves on her?
Or could anything else have happened in the past few days, that was out of the norm of her usual routine. As you may know, it can the following day before the fatigue kicks in.
Anything like a bit of a birthday celebration or some visitors can do it. Even having a particuarly lengthy or thought provoking conversation with her physio in front of her, could have been a little mentally taxing for that day.
It’s also worth observing her to see if any new improvement has been made in her, as that can initially be draining. Though, if it’s a mental improvement you may necessarily notice.
Or your mum was just having an off day, as we all do from time to time, with or without a stroke.
Does he try her with standing at all?
Lorraine
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Hope your mum is a bit more settled today.
Perhaps the physio was trying to push your mum a bit further & she found it uncomfortable. Or, as Lorraine has said, maybe it was an off day. If that’s the case you’ll know today & when physio tries again on Monday.
I think you said she was a bit uncomfortable a few days ago. Perhaps it’s the same thing recurring.
Hope things have settled today.
Ann
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@ManjiB I have days when physio is hard even though I generally love it. I personally believe you should persist I’m sure your mum will hold her hand up flat to make the ‘stop’ sign if that is what she wanted.
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How did today’s session go @ManjiB
Lorraine
Hi Lorraine - Her last session was yesterday and I have asked the PT to pause the sessions as I am not comfortable with what they are doing and that is based on my observation of how Mum appears to be responding to the activities. The first three / four weeks she was OK, but there has been a change in the last couple of weeks that suggests she needs a rest or the therapy needs to be reviewed. The pause is to allow Mum to rest but also for me to sit with the PT team and discuss what we have done, where we are at and where we go from here.
I have a little chat daily with Ann @Mrs5K on our games thread and so I will just copy and paste a few snippets here to bring you up to speed.
START: Snippets - from t’other thread.
About Yesterday’s session
Mum was Ok ish over the weekend but still not happy when the physio session started, so I stopped it half way through. I then chatted with the PT and wasn’t given any confidence they had a plan and knew what they were doing.
The PT agreed with what I was saying but then couldn’t explain why they were not doing it. Also, after the Friday session when Mum complained throughout as she did today, I asked if it could be down to fatigue and the answer I got did not give me any confidence.
To cut a long story short, I asked for a review of what they have planned, how they will execute and measure the outcomes. I hope they will be able to convince me, if not I will have to look for another PT. I spoke with Fragility Nurse last week and she mentioned there is a PT in their team who can be hired on a private basis.
Failing that, I may have to accept, this is not for Mum and the experts are right after all when they say this is the best it will get - I so hope not.
Ann’s feedback
“Sorry to hear your mum isn’t happy at the minute. I think you have made the right call in relation to the physio. Hopefully they can come up with something that will work for your & you all too.”
My response:
Definitely the right thing to do for Mum - she had another bad evening/early night last night and so we are going to let her have a restful week and some extra tlc. We are still struggling with why she keeps getting bloated - it was really bad yesterday and we now have a suspect !!
You may recall she has started to drink water by mouth and we now think she is sucking in air as she tries to slurp the water (rather than drink it). She slurps rather enthusiastically and it is possible the air is building up in her tummy as she does not burp that much. We will have to monitor this in a scientific fashion and it would be great if the theory is right.
END : Snippets - from t’other thread.
And as at now …
… she is happily nattering with me having been given some tlc and her teatime routine.
Very relaxed and on her feed - no signs of bloating so far (I did give her her glass of water but tried to encourage her not to slurp too much which to her credit she did).
Yesterday was a really lovely day for her as she had her great grandchildren visit her. She hadn’t seen them for some time and it took her a while to recognise them - they are all so grown up!!
Anyway, she had a wonderful hour and a half with them as well as her granddaughter. At the end she just wanted to carry on - she did not tire or get bored i.e. switch off. She was fully alert and paying attention to what was going on - it was quite amazing.
It occurred to me after the session that she may well have a massive fatigue attack - she has never engaged with so many people in the room at one time so much. It was as if she was her old self again - queen bee, telling all the stories and audience loving it. But so far, nothing – if anything she seems to be recharged
During the day she has rested - cat naps etc. and as mentioned earlier, the teatime session was one her most relaxed ever and now she just wants me to entertain her and so …
The joys of being a carer
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Oh how lovely that your mum got to dpend some time with her great grandchildren & granddaughter.
Sounds like she benefitted loads from the visit. Pleased to hear she is feeling more settled too.
If you can get her to drink slower that might just solve the bloating too…or at least ease it off.
Your mum is a real trooper but so are you & your family. What you do for her day in day out is no easy thing. I am sure your mum is extremely proud of you all.
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