Hello everybody is anyone else suffering from disassociation,not recognising themselves post-stroke?I’ve lost all my body fat and muscles have atrophied and been broken down to keep me alive as I’ve been nil-by-mouth since the stroke,just PeG fed.but I don’t get nearly enough calories.when I see my reflection my brain asks:’who is that?’then I have a little internal altercation as I reason with myself that it is in fact me,but I look a little different as the muscles in my face are no longer operational -no eating,smiling or talking.
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Hi Mich-mm, as far as it goes for me I have disassociation but in a different light - guess many of us do. I’m lucky as have came out the other side “fully functional” I can walk, talk and generally do everything almost as before.
The difficult part is just not as well. always been active in terms of doing things. But just now feel as if I have aged more than my time on this planet and feel like a broken wreck of a human, my head function, still sharp enough to return to work and deal with complex kids in care but still feel like I’m not me any more, don’t fully recognise myself either. This is hard and can consume me at times.
I have damaged my own recovery so on take two now, found a verbal bashing from a very forthright physio helped more than counselling could: she pointed out my determination and what was positive and also what was negative and asked me how I could do the stroke patients workbook and not realise this was me.
Apologies for the length but to me the point is yes I know I can’t see me just me fully yet but somewhere inside I’m still me just taking time to find me again I know I;m different than before but still me just stroke has changed some of me.
Best wishes to you for every step on the road to recovery.
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Hi Michelle - a couple of points of observation.
- Mum has been on PEG feed for over six years and only lost weight during the first month when she was not fed at all - she was surviving (or starving as we like to think) on a drip to keep her hydrated and mineralised. She lost 4kg (her natural weight is 48kg). Once she was put on the feed (liquid feeds such as Jevity, Ensure and other similar) she put the weight back on returning to her natural weight (which btw suggests she is obese!!! - this is again nonsense as far as we’re concerned. Her natural weight is what she has been most of her adult life and we don’t care if she is “obese”). On occasions when she ends up as an inpatient for more than a week she always loses weight because her feeding regimen goes awry.
In short, Mum is PEG fed and this has not affected her weight or her muscle mass until now. It looks like she is now beginning to lose muscle mass and this is down to her not getting proper physical activity which she used to get.
- If you are losing weight as you are, why has the healthcare professionals not done anything about it?
Mum is weighed every three months to make sure her weight is OK. There are small variants e.g. if she has come back from an inpatient spell but nothing that worries the dietician. I must say that we have been very fortunate to have such a wonderful dietician (two actually) who have been a godsend from the first time they came to see Mum post-discharge.
Her dietician has worked out a daily calorific intake and that is what she gets. Likewise there is a volume of water she needs to remain hydrated and the water and her feed has kept her finely tuned.
Finally, I would like to add that some people do lose weight - if I am not mistaken or if memory serves, Ann @Mrs5K is taking ensure feeds on top her regular diet (she is not nil-by-mouth) to keep her weight up.
So if the weight is low, your dietician should be looking to increase your calorific intake or address the situation. When was the last time you were weighed and saw the dietician?
Of course all of the above might be totally inapplicable to you as we always say we are all different and our needs have to be addressed individually.
I wish we had access to this physio @Jbob 
You are right @ManjiB i am on ensure drinks on top of my normal dietary intake as I can’t maintain my weight without them. I lost over 4 1/2 stone and am now considered underweight- BMI 16.9 ish. But have stabilised so content for now. The problem I have is balancing exercise with my weight because if I do a small amount of exercise I lose more weight. Dragging my leg must be very effortful.
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The right side of my mouth drooped for 2 years - 99% of people were too polite to say. Atrophy was at its worst 6 month post. I really hope things pick up for you Mich - All my best wishes to you, Roland
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Thank you @ManjiB and @Mrs5K.pre-stroke i was considered pre-obese! Bmi is a very inaccurate way of measuring weight because it doesn’t take race and bone density into consideration.I’m naturally a big person!elephant trunk legs my uncle used to say I could kickstart a jumbo jet!the dietitians haven’t done anything about the weight I’ve lost because they didn’t want my weight to impede my rehab the main concern for me has been the muscle atrophy rather than the fat loss!I now couldn’t care less if I was deemed overweight!my extra weight has kept me alive for the last four years and I believe was the reason I had three successful pregnancies!
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Yes, I agree about inaccuracy measuring weight
Distribution / bone density is everything.
R
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