Sorry @SimonInEdinburgh but I was the one in the house with him at the time.
No more Indian for JP for a while!!
K
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@nsw72 that is interesting to read as I am a fellow FND sufferer which waa diagnosed in my case around 6 months after my stroke. If they are going to refer her for an assessment then snatch their hands off as I’ve been left to get on with it. Help is pretty non existent where I live & physios wrote me off once I had FND diagnosis.
Have a look at the neurosymptoms.org website if you want to read more about it. There are also Facebook groups FND Hope & FND Action that you could join.
My FND affects my mobility & i have a leg that doesn’t work as it should. I can’t lift my foot off the floor 
Hopefully her eye is nothing much & they can put your mind at rest on it.
Best wishes
Ann xx
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Thanks for this Ann, I’ve just had a look at the link. She has been referred to neuropsych for a consult, her OT seemed very keen to have her assessed and said she felt significant inroads could be made with therapy. I am so sorry this has not been made available to you.
Mum’s spinal pain has been off the charts today (spinal stenosis), because of it and just not being able to get comfortable it makes her very low, non communicative and still won’t eat. I feel like she has gone significantly backwards in the last few days.
My Dad has gone back up this evening with a hope of speaking to a doctor as I couldn’t get to speak to one earlier.
Thank you again, and everyone for the amazing support and insight you are so willing to share with me, it really is helping to feel not so alone in our journey x
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Should have thought of that; it’s now done 
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The positive news we’ve received from the doctor today is that they rescanned her this morning and the bleed has reduced. This means that medically she is doing well.
The difficulties she is experiencing relates to her inability to engage - she refuses physio, won’t eat the hospital food, won’t drink much etc.
She is all consumed by her spinal pain, because she isn’t walking her pain is immense, so she isn’t walking… a vicious circle.
She can’t be forced to do physio, eat etc so they are exploring avenues to resolve this, but it looks like it could be a neuro psych issue (basically the software in her brain not talking to the hardware) but in the meantime she is being given pain meds for her spine and we have to just continue taking food in to tempt her and trying to cajole her into being compliant.
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Well I’m not quite sure what to say
I guess as usual for this type of thing positives and negatives…
But I like to think 2 back and 3 forward.
So for this I would say in my humble opinion - not to be confused with advice or actual knowledge:
Back:
Not engaging with the various things you have mentioned
spinal pain and walking
forward:
you are aware and so are the docs and trying to think of ways to help - like the costas and the prawns!
she has some meds to ease the pain
You and your family have a better understanding than you did 48 hours ago…
Now the other bits - not engaging - ok but she did before so is that as someone said to me today a slight regression from the first few days/weeks/whatever?! but maybe say (remember) you liked chatting with those people who were here before - these people are nice too. The nurses and the doctors think you’re a fighter etc.
can’t say much about the vicious circle - leave that to the docs
maybe some rugby tomo? England at 4.45!!!
Stay cool
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@nsw72 don’t forgetthe rugby at 4.45!!
@nsw72 good to hear the bleed is reducing. Positive progress for you all.
If they can get on top of her pain she may be more inclined to engage in physio, eating, drinking etc. I know if i’m in pain it isn’t conducive for tucking into meals. Add into that hospital food & i’m not surprised she isn’t eating much.
Hopefully if you’re able to continue taking her in more appetising food & drinks this will improve.
Hope she doesn’t have to wait too long to see the neuro psych.
Best wishes
Ann
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She actually agreed to Physio today! It was hard to watch as she is just so non communicative with them and doesn’t seem to compute what they’re telling her to do - but she is physically able and there is nothing to suggest why she is being non compliant so it’s just about getting her brain engaged.
I think her environment is contributing- she has gone downhill since the 3 ladies her age have gone, she’s now got an elderly gentleman and lady who are very poorly and not awake.
So hard to keep her engaged, she just wants to close her eyes and not speak.
That’s not so say I don’t appreciate this is not her being a wotsit, it’s just so hard to get through to her x
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Shame I support Scotland! 
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Not yet, we have made a couple of enquiries for stair lifts although the physio said today until she is walking better that would not be an option, it would be a bed downstairs.
We are meeting OT on Monday to discuss where we are - I think she will move to the step down stroke rehab ward soon as she is no longer acute - I’m hoping that will help too as her environment is not great. Then looking at caters etc I guess.
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Yay well done your mum. Hope she continues to engage in physio.
It must be hard for her in hospital if there’s no one she can chat to. Makes it a very long day.
She’s doing ok though despite the ups & downs.
Xxx
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I hope so. The physios were trying a bit of tough love with her today as softly softly so far doesn’t cut it.
I spend so much time trying to work it all out and then just realise that there is no straight answer for any of this, we just need to keep chipping away and hopefully she will come back to us x
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I hear you Simon, and my choice of words may not have been the best.
What the OT & Physio were essentially saying is that physically she is capable, medically she is capable, we just have to work on a way to spark her engagement in the Physio work so that she can move on with rehab and getting to her end goal of being home. Because not pushing her a little could result in her regressing physically and ending up with a harder battle than what she started with.
It’s not about getting her ‘back to normal’ asap, it’s about getting her to a place where she can begin to build her new life in an environment that’s conducive to healing.
Let’s call it ‘positive encouragement’. They’re not trying to push her too much but with the same token, they want to progress her from the acute unit into the rehab ward where she won’t be surrounded by extremely unwell folks so she can have more mental stimulation as that seems to be a contributing factor in her current mood slump. If she can achieve these small steps they can look at getting her home.
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I know! Just home from seeing mum and about to take my goddaughter for a driving lesson for an hour then will head back up to watch with mum and dad. I’ve left my dad with instructions as to how to get it on the iPad which could be interesting…
Mum looked brighter today, had physio and a shower and ate breakfast and lunch. Huge improvement. They’ve got her a good recliner chair now which is better for her with her spine issues.
I expect she will be very sleepy later but today has been a better day for a while so I’m heartened. Just to see a little brightness really helps us to keep going too x
M’on The Boys
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@nsw72 i am really pleased to hear your mum is brighter today. Long may it continue.
Hope your dad worked the ipad to see the rugby. Enjoy the match. Xx
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Can’t offer much but thinking of you and your family❤️
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