The very first sign something was wrong

The first indication that something was wrong for me was during a holiday to Majorca about four years before he died. On this holiday, though he seemed he usual self in many ways, his personality traits seemed exaggerated. For example, my Dad had always been a very punctual person, my Mum not so. This had always been a source of conflict between them and I can remember times in my childhood when my Mum had kept my Dad waiting and he had got very stressed by this.

On this holiday his punctuality seemed to be much magnified, so much so that he started to pack to come home a couple of days before we were due to leave. Every day he got up at 6am, much to everyone's irritation (especially mine as I was sleeping in the living room). On the final day he was ready for the coach a good two hours before it was due.

In retrospect, I wish we had been more tolerant and understood these to be the first symptoms but we didn't realise.

So, for me the first signs were just that he was just as he always had been but as with early dementia (or so I believe) his personality traits became exaggerated.

Understanding PSP

This is something I wrote for the PSPA to encourage earlier diagnosis

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My father died in May aged 75, having suffered from PSP for at least four years. He was never formally diagnosed; instead he was misdiagnosed many times.

Raising awareness of PSP has now become a mission for me; I believe that early diagnosis will help raise the profile of this terrible illness and will ultimately encourage funding to be put towards finding a cure. I am not going to be able to talk here about the stages of his illness and how it robbed him of his personality and energy but only how an earlier diagnosis would have helped him and my family.

My father had been a very mentally alert and physically fit man and yet not only did he start to display increasing dementia-like symptoms but he rapidly became physically incapacitated too. At first we believed he had a form of dementia but this didn’t explain the physical symptoms, Parkinsons seemed possible but didn’t explain his confusion. Things only began to make sense a year before his death when a friend mentioned that her father-in-law was displaying similar symptoms and was believed to have PSP.

The heart-breaking lack of diagnosis by endless medical professionals meant my father, a very private man, had to explain his symptoms over and over, was subjected to numerous (and, to him, humiliating) tests and was prescribed medication that I think at best did nothing and at worst gave him unpleasant side effects. We, his family, had our hopes raised and then dashed on many occasions and even began researching dietary ‘cures’.

I am sure that if we had been better informed earlier we would have benefitted from being in touch with other families, from support groups and from forum advice such as the recommendation for him to wear soft soled shoes (to make it easier to slide a foot forward to help with the ‘freezing’) - something I only found out about after he died. Sadly, we might also have communicated with him better if we had understood the extent of his comprehension.

Mostly though I feel a deep regret - if we had had a greater understanding we might have been better prepared for the later stages; the incontinence, the altered mood state, the rigidity and finally the choking and despite his depressing prognosis, ignorance made the situation worse for everyone.