MND Association, Cornwall Branch
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Elsie's Diary - 2016




Fighting Feet


Last year in October 2015 I moved my bedroom downstairs with a posh profile bed, sourced and tried in specialist shop with the aid of my long suffering O/T.


First difficulty head and neck support, resolved by two thoughtful physiotherapists working with me lying on the bed, to identify the best position for two pillows and myself. After careful positioning and many attempts of cradling pillows, success comfort! Two lead carers witnessed their efforts and took note of the correct position for me with pillows suitably cradled. The following nights became known as the ‘pillow gate challenge’ by my carers. Subsequently daytime training was given with carers taking turns lying on my bed, with others watching, my resourceful care manager patiently demonstrated how to position me and cradle pillows. Thus eliminating my early hour’s desperate texts, to my very understanding care providers who are ‘on call’ 24x7, requesting rescues from my very uncomfortable position in bed.


Many years ago my inspirational partner came up with an inspired solution for my pressure sore knees caused by them locking together overnight (no chastity belt needed). A draft excluder! This old fashioned idea to prevent drafts from under doors, worked beautifully, positioned from slightly above my knees, between my thighs, knees, legs and feet. You can imagine the shock for my carers, it has had various nicknames over the years, some too rude to mention, I will spare your blushes!


Since the New Year, it still works for my knees, BUT during the night my feet have started to fight each other! Due to my left foot gradually over time turning inwards, although separated from my right foot by the draft excluder, during the night involuntary jolts from my legs, my feet part company with the draft excluder. I wake with my left foot trapped under my right! Using the profile bed controls I attempt to referee. Bed tilts, bed levels, bed head raises, bed knee break lowers……..all positions tried numerous times, eventually a truce is declared temporarily, I can sleep again, until the next squabble.


If any fellow MND suffers know of a solution, do let me know no matter how bazaar, you know by now I will try anything!!!!!!!!!!!!!!!!!!!!!!!!!!


Moral: There must be a solution somewhere!