I have done extensive research for the past 18 months - my mother has been ill since 2007, progressive from walking and talking normally, to being permanently wheelchair-bound, and many other faculties are affected (her speech, swallowing, vision, co-ordination, volume and tone of voice, etc.) PSP is the ONLY neurological condition which is my mum to a T when reading everything about it. Her neurologist has confirmed that she has a serious progressive and degenerative neurological condition, she has been referred to Kings College Hospital in London (but that was 4 years ago), she spent 5 months in hospital last year after falling (for the umpteenth time that week) and fracturing her ankle... her neurologist won't listen to me, and he does not spend any longer than 10 minutes with her every 6 months, always commenting about the rapid deterioration, but never going any further... he wanted her in for a day of observation, scans, etc. again but after a noro-virus outbreak and a ward closure for a weekend, this has been 'postponed indefinitely'. It is incredibly frustrating to watch, and is heartbreaking too. My mum's personality has also been affected, she is demanding, very 'curt', self-centred, etc. but when she is so ill you can't neglect to give her the help she needs. She has carers in 3 times a day and when she was in hospital, various staff members (nurses, registrars, etc.) agreed with my observations about PSP and how exactly my mum displays these symptoms, and has deteriorated accordingly. Has anybody else had this much trouble trying to obtain help from the one person who can make the difference in this - the neurologist?? Best wishes to you all, I have joined only tonight but have seen many posts demonstrating a community of like-minded and caring individuals, all very brave in their own rite in the fight against PSP, Natalie x
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