I have indeed been keeping a journal so I can remember what happens each day and to get it all out of my head. I am sure it will be an interesting read one day!
3 Likes
So today we have had two things…
- Her right eye is looking lazy and dilated. She says she can see okay. It was a bit like this yesterday but the doc checked it and it seemed to go back to normal. Same again today so another doc has looked at it and will follow up tomorrow. They didn’t seem overly concerned. All her obs are good.
- I had a long chat with her OT today - Mum hasn’t been able to walk using the stick for two days which she had been. She has spinal stenosis which radiates into her leg plus PMR so she does have mobility issues. But the OT noticed there are some inconsistencies- she leans to one side in her chair but to the opposite when stood up. This amongst other things leads her to believe she may have FND. her bleed has also affected her Corona Radiata and there is some evidence that those with PMR are more susceptible to FND.
She has emailed Psych for an assessment and if it is FND then she will have psych therapies. This may mean a longer rehab before she’s home but I’d rather that than sending her home without the right treatment.
1 Like
I only use Dingbats Arctic notebooks and I have to put extra stickers on them because I am mad. They cost approx £20 each and I go through them like a vindaloo through JP a couple of weeks ago 
I am now on number 4 in 10 months and have one left unopened! Discount them soon please Jeff B.
But I really do recommend them - just for my mental health I write in big capital letters and it helps me. I’m just so grateful I can write something!!
eg (sorry for profanity)
And also planners - I have so so many appointments that I can’t cope with phone / tablet / laptop stuff so I have 1 a4 page per week polar bear (of course) planners 
I also think they will also be a good read one day for someone!!!
Stay cool
2 Likes
Sounds like brilliant progress at least in terms of understanding a bit more and getting a bit more info - can’t pretend to know what all of those things are but all I will say is I believe in your mum!!!
xx
Stay cool
3 Likes
How old is your mum, you never said, because her age might be a determinant that limits functional recovery from her stroke as well as her general health condition prior. I won’t lie to you, stroke recovery is a long slow climb, we are talking years as opposed to weeks or months
It’s only been a week and the brain has a lot of work to do it right again as best it can. It takes 6mths for the brain to heal and recover and it will be two steps forward and step back all the way. It can seem very frustrating and even worrying at times but that’s the way it is.
And there will be certain things you’ll to have in place when she does come home but don’t let her leave hospital or rehab without any of this in place and a full home care plan come the day
2 Likes
I don’t know if you’ve already seen this post, but there are some useful insight from many perspectives in it, so worth a read through the posts some time. Useful links too.
3 Likes
My Mum is 77, but I like to say a young 77 if that makes sense? Very engaged, interested and usually talks to lots of people. She worked in a psychiatric hosp for 17 yrs so is very switched on to medical/ psych - obvs not with herself at this point.
My Dad is 85, but again very active and bright for his age.
I am 51 and my brother 4 yrs older.
2 Likes
My mum was a psychiatric nurse, my daughter wants to go into that too, though she’s not yet decide in what area specifically. When she decided she want go go into psychology, it was with a view to working on the therapy side for the young similar to you. I myself find my whole stroke recovery journey fascinating. I wouldn’t have wished on myself but out of all my siblings, we all agree I’m the best one to cope with it 
3 Likes
That’s Too much detail…
1 Like
Sorry @SimonInEdinburgh but I was the one in the house with him at the time.
No more Indian for JP for a while!!
K
2 Likes
@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
2 Likes
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
5 Likes
Should have thought of that; it’s now done 
1 Like
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.
4 Likes
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
1 Like
The early days will be like this - you will get through it 
I think in my non-medically trained ignorant opinion that the one to focus on is the not drinking because hydration is a foundational factor in recovery as far as I know (AFAIK)
A point of philosophy: if you see it as two steps forward one step back or some variation on then you’re looking at too granular level of detail for the long term and less granular level would see steady progress .
that point of view is heartwarming rather than the continual perception of taking steps backwards which is depressing .
If you are seeing a heartwarming journey you will radiate that and it will help to become self-fulfilling as a prophecy.
It is hard. You’re doing great, and you need to continue finding the strength because this will be a marathon
Have you found sources of carer support yet for you and your dad?
Ciao Simon
2 Likes
@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
2 Likes