A Brief Introduction

[hmfsli]

I thought I would introduce myself before I start sharing my thoughts about and experiences of PSP; it may help you to understand where I am coming from in later posts. I am single, a Christian, part-time employed and part-time self-employed. I am the middle child in the family, older brother and younger sister.

My Mum was diagnosed with PSP in 2008. Prior to that we had been concerned about Mum's health but persuading her to see her GP took some time. Mum has always taken the view that if you ignore an illness it will go away soon enough on its own; this works well for the common cold but not for PSP! In the end Dad told her that if she didn't make an appointment with the Dr, he would. We were fortunate that the neurologist was quick to spot one of the distinctive features of PSP, Vertical Gaze Palsy and equally fortunate that Mum liked him and was therefore willing to follow his suggestion for more tests to eliminate other conditions.

The shocking thing has been how quickly things have changed. In February 2009 my sister bought Mum a walking stick which she reluctantly agreed to use but within 6 months Mum was using a wheeled walker outside the home; 6 months or so after that she was using a wheelchair. The difference between Mum now and Mum just prior to diagnosis is huge and one of the hardest things to get used to. I will return to this theme again I am sure but that is enough from me for now.

[PSPA_DebbieB Partner PSPA]

Hi, thanks for joining HealthUnlocked and posting your blog...reading about your mum and the changes that have taken place in your lives over the last few years is really insightful. I think HealthUnlocked will be a great place for you and others to tell us how it is as well as encourage and support those in similar situations. Keep on blogging

[HannahDaykin]

Wow! I had to check that I hadn't written this! There are so many similarities & I'm surprised how alike our stories are; My Dad was diagnosed in 2008 after lots of persuasion.

I found it really scary when our house was almost 'took over' by all these things to aid Dad; the booster seat type things on the toilet, the swivel chair so he can get into the bath, the railings etc.

[hmfsli in reply to HannahDaykin]

I don't live with my parents but I know what you mean about the equipment. It seems like there is a new piece installed every couple of months or so. The latest piece is a rota-stand to help Dad when Mum needs to get up and use the commode in the middle of the night.

[Elli3]

Over the last year we have been supplied with every piece of equipment available, to the tune of £30,000 and after installing it the powers that be have decided that they cannot fund the care that my husband needs and have said that he sould go into a nursing home.

[kay1]

I have a house full of the same equipment, husband has been in hospital two weeks, he is on his fourth catheter, new infection, had bladder wash and now they want to insert camera into bladder. I have been told that i will not be able to care for him at home as he can no longer leave the bed and his deterioration is rapid,. that may be rapid but the quality of his life is at zero, when do i stop all these tests and just let him be peaceful instead of the agitation that he is going through now. Once the medics have decided there is no more to be done he will go into nursing care but he pleads to come home when i visit - i am another one that has shed no tears yet.................

[Elli3 in reply to kay1]

We made the decision to stop test, as there were no benifits for my husband,it seems to be just collecting data to go on his file, nothing posative came from them, it just seemed to establish that the condition was progressing which is something we all recognise, unless something useful can result from them, it doesn`t warrant the stress involved.

[hmfsli]

John Donne wrote that "No man is an island" but it seems that, at least in Elli3's and kay1's experience, the authorities are determined to treat their husbands as if they are. Surely we should be looking at people holistically and not just treating them as conditions to be treated or managed?