Due to public demand (where the word ‘public’ means half a dozen people), I am continuing with the blog.
If you have just ‘switched on’, I should tell you that this is the start of the ‘next five years’ (ie years 5-?). For the ‘first five years’ please scroll down the menu back to the first blogs, January 2017 onwards. I would recommend you read the first blogs to get some background, rather than jumping straight into the ‘next five years’ which will be rubbishier and (dare I say it) scarier.
I have come to the conclusion that I have been dithering about continuing because the PD is gradually getting both different (positive) and worse (negative). The blog posts may well become more difficult to write and read.
If you have been paying attention you will already know the rules about sympathy and head tilting. Some of you, (you know who you are), have ignored this and have still ‘head tilted’. I am confident, however, that most of you will have thought ‘she reads positive’ and thus avoided head tilting. However, now is the time to forgive the head tilting and to start the next five years with a clean sheet.
I should warn you that I think the next five years may test even the most staunch ‘non head tilters’. I am not being melodramatic, I have tried to prepare you for this. I have slipped in the words ‘degenerative’ and ‘incurable’ into many of the blog posts.
I will be (even more) honest with you. The ‘first five years’ have been okay ish to write and I have enjoyed writing most of it. Even the walking twaddle, it is rubbish and upsetting, but actually rethinking walking, and walking backwards through Leicester Square with friends is actually quite amusing (ed : stop right there, some eye leakage did occur). This compares with today’s problems, for example a recent incident when in the darkness in the high street, dystonia hit my foot and I couldn’t walk at all … I was with a friend, but still scared and cold in the pouring rain, I couldn’t walk at all, backwards, forwards, upwards, downwards or sideways.
Please don’t feel you have to continue reading. In much the same way as I don’t believe you should force yourself to walk through the London dungeons (I didn’t), or through the glass shark tunnel at the aquarium (I didn’t), or to continue reading a really really long book that you hate (I didn’t).
When reading the following blog posts, please bear in mind I have a really supportive family and lots of very patient friends. I am under a really brilliant medical team at a top hospital who are ‘on the case’. I am involved in the charities which are a vital source of information and support. I am also involved in the local support group. So all in all it may be twaddle but I am dealing with the twaddle with fellow twaddlers, those who understand, those who don’t (but try to), and those clever people who are trying to understand and cure this flaming thing.
So the blog continues. I will continue to attempt to communicate and raise awareness of living with an incurable degenerative neurological condition, with as much positivity and humour as I can gather in a bag of colour blind hedgehogs*
*Obviously this is not true (hedgehogs are probably not colour blind).
** Two points if you can name the tv show this is a (rough) quote from.