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Danny1314

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Friend was DX
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Sco
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Grampian
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West Cairnbeg
I'm a friend of a person who has been recently diagnosed with bulbar palsy. With the benefit of hindsight its clear there has been something going on for a few years. However about a year ago her voice changed and she was being treated for a stroke.Things have just got worse and she was finally given a diagnosis in late November.
She has no problems with her limbs but is unable to eat solids and can only manage a small amount of fluids.
Her main problems are at night as she cannot lie down to sleep and she complains of this pulling sensation.
I cannot imagine what this is and if anything can be done to alleviate this feeling. Any advice or suggestions would be much appreciated. Thank you.
 
Sorry about your friend. Pulling sensation where? Is it transient or constant when lying down?
 
She describes it as coming from her feet and a feeling of her insides being pulled. I don't if it is because she is struggling to breathe so other muscles are being used.
 
Should have added. It is much worse at night and is there all the time at night.
 
Does she have a hospital bed, where her head and feet are higher than her torso?
 
Not a hospital bed but an attachment to her own bed to elevate her when sleeping.She says she can't use it though. She has taken to sitting up at night and just trying to nap rather than sleep.
 
It sounds like she needs a hospital bed.

An alternating air mattress works very well on them for many PALS but there are other alternative mattress overlays such as the roho.
 
I'd agree re the bed and mattress however she is so down it is difficult to know what helps and what doesn't. She has the option of using a hospice and they will have easy access to that equipment.
She wrote down the feeling that she gets. She said it's like each part of her body is working against the other part and pulling it apart.
 
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