The PSP Association

When my mother, Gladys, fell over in the garden while talking to a friend in 2003, she cracked her head with such a dreadful sound that the friend feared for her life, though was apparently none the worse for her accident. Not long after this, the first symptoms of PSP were noticed - though whether there is any connection between the two I have no idea. Gladys was already suffering from a range of health problems: circulation, fluid retention (swollen feet and ankles), sore feet, hypertension, high blood pressure and psoriasis.

By summer 2004, my mother experienced dizziness in the mornings and problems with balance, and was finding household chores more difficult. A number of medical appointments over two years failed to indicate the cause. Gladys always seemed to have an excuse for not going to her regular social activities and continued to slow down to the point where we thought she might not make it to 2007. (1)

In autumn 2006, the GP told her that she was sending her to a specialist as she had an idea what it might be, but was rather wide of the mark in commenting that it was ‘nothing horrible' and ‘if she was correct it would give her back her life!' On 26th October 2006, my mother was seen by a specialist who appears to have known straight away what it was - PSP - he confirmed it by her inability to move her eyes up and down (gaze palsy). Apart from a suggestion that she attend a movement disorders clinic - which the GP told her not to bother with - there was no further medical care of any sort related to the diagnosis. The specialist did suggest trying some medication for Parkinson's but decided that it probably wouldn't help. (2)

Gladys was now hardly going out at all and spent more and more time sitting in a chair. Housework was now largely impossible and she gave up many of the things that might have offered mental stimulation - doing the finances, crossword puzzles, etc. Social services carried out an assessment of her needs and provided lifts for a chair, a raised toilet seat and a mechanism to raise the mattress. Gladys had very little problem with her vision, talking or swallowing at this point but could become easily upset. She walked only very slowly and tended to fall over through tripping over an obstacle, rather than loss of balance. She was also finding it increasingly difficult to wash herself and get dressed. (3)

My mother had also developed mental health problems - confusion of people's identity, hallucinations, mixing up past and present, thinking her parents were still alive... Eventually, in 2008, a geriatric psychiatrist provisionally diagnosed lewy body dementia (it was never confirmed), though no medication was prescribed because of her overall condition. (4)

In spring 2008, Gladys developed a blocked bowel (polyps were identified) and had to spend three weeks in hospital, where her mental confusion increased noticeably. (5)

Prior to her discharge it was arranged that carers would come in twice a day to help with washing and dressing. Gladys showed a little more willingness to go out. She could - on a good day - walk up hill to the bus stop, get on and off without difficulty, walk around the shops for a short time and return home - though she did find it rather tiring. She was finding it difficult to write but could still sign her name on better days. She could use the toilet, walk up stairs, make sandwiches or a drink, though the kettle became a little too heavy. Gladys continued to become more and more sleepy and developed ‘epileptic' episodes with reduced levels of consciousness, at times becoming very unresponsive. She turned down the chance to go to a day centre - she had previously been very sociable but now seemed to find it difficult to talk on the phone or to people she did not know, though she liked and would chat to her carers when they came to dress her or get her ready for bed. (6)

Sadly, Gladys then developed a major pressure sore at the base of her back. By November it had become an infected open wound - the community nurses had been keeping an eye on it but a computer error meant they did not call for nearly a week and during that time it turned septic. (7)

By early 2008, my mother could not get in or out of bed by herself and had increasing difficulty getting out of the chair even with help, though attitude as much as physical ability seems to have determined this. By November 2008 the carers would not help her out of bed or down stairs for health and safety reasons. In fact, with a little support and encouragement she could still stand up, walk and negotiate stairs (despite a loss of confidence). (8)

On the evening of November 18th my mother became very uncooperative. By 5am the next morning she was making a strange breathing noise and I could not rouse her. She was admitted to hospital - a stroke was suspected but ruled out and attention focused on the infected sore. She could not get out of bed for a week and, when she was allowed to, only did limited physiotherapy (this was an area of dispute with the hospital - they said she would not cooperate, apparently due to her arthritis causing her back pain, from lying in bed all day...). Gladys was put on a catheter and a drip and was said to not cooperate with taking in food, partially because she no longer had the strength to use cutlery and partially because she was often very sleepy. This was another area of contention. By Christmas she could not walk, stand up or write, and her speech was at times very quiet and barely intelligible - though at other times perfectly clear and strong. The consultant did not expect her to leave the ward alive, though for various reasons we were never told that - another contentious aspect of her care! Towards the end of her stay in hospital, her food was liquidised and drinks thickened to prevent choking caused by problems with swallowing. (9)

In February 2009, Gladys was transferred to a care home and immediately was eating and drinking with no problems (being fed by a carer). The pressure sore showed significant improvement and before long she was able to sit up for short periods to have her hair done and eat in the dining room. However, she weighed only 7 stone and had very low blood heamoglobin levels. (10)

Her mental confusion increased and she was asleep much of the time; however, could still make some perceptive observations and managed a fairly sensible conversation with her brother on the phone. Sadly, a chest infection knocked her back and she developed bowel problems so could not get out of bed for a few days. On Good Friday and Easter Saturday she had a very bad chest and was treated with more antibiotics. On Sunday she seemed much better and quite talkative.

She made a couple of comments which seemed to imply she was preparing for death. On Monday morning she was a little sleepy but had lunch and a drink a few hours later. At 1.30 a carer found that she had stopped breathing. The post mortem concluded that difficulties in swallowing and therefore food going into her lungs had led to aspiration pneumonia. They did not appear to appreciate that her PSP made this a very likely scenario. (11)

The care home staff had had no knowledge of PSP but seem to have done as much as they could to improve her physical health and were very optimistic right up to the end. (12)

Throughout her ordeal my mother rarely complained, only occasionally became upset about her condition and was regarded by those who cared for her - at home, in the hospital or in the nursing home - as an easy and likeable person to look after. In the end, she had so many inter-related conditions that it was a wonder she lasted as long as she did and in such reasonable spirits.

What would have helped?

The National Service Framework for Long Term Neurological Conditions gives guidance that, when followed, would have helped to alleviate Glady's difficult experience and improve overall quality of life. Here we outline the NSF Quality Requirements (QR) which would have helped.

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