by Thomas Mccallum
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20 November 2020
If i were to try and describe what Parkinson's was it could be as simple as telling you that the part of the brain(substantia nigra.) that controls smooth movement over all actions is dying then that would be a fair account. however it really is so much more, A typical day for me can be as extreme as not being able to walk or as good as just stiffness and aches, having to negotiate anything from bus drivers with attitude to Que's for toilets missing busses, having to leave places because they don't have the proper stuff for me to be able to be independent is not unknown. However I can tell you how it feels to piss yourself whilst trying to undo a button it's degrading, i cant tell you how bad it is to tell a DWP assessor that you have trouble cleaning yourself because your hands wont work today, you really have to remove all your dignity and self worth too prove that you need some extra help to try stay independent, it would seem that a neurologist diagnosis is really not enough. There are many things i cant do but there is loads i can do and one of them is looking after my mental and physical health not always easy , however i really am so fortunate that i have some caring individuals who i rely on and i thank you all . i really don't think this pandemic wont go away anytime soon and we all have to learn how to cope with it and at any cost , Christmas will be a very different affair this year , i used to love the Christmas gigs with the choir that really made the year for me but i am neither fit enough or able enough to do this now.. I hope next year will be something of a better summer for us all and if we do what we know is right then it will be better, someone recently asked me why i write these blogs?, the simple truth is i didn't know what else to do , the cold way the diagnosis was delivered will live with me for ever, again i was lucky enough to have the support of 2 friends that day, but for me writing it all down makes it liveable makes it much more of a real thing and not an exaggeration it allows me to accept things at my own speed . Fear plays a massive part in all our life's but when you are presented with a diagnosis and you know it will get you its just a matter of how quick or how slow, then it makes you look at this world in a far different light. Today and right now are the only things that matter,,,, yesterday is long gone and tomorrow has not arrived yet so living in the moment is the only thing i should be doing and that's what i will. of course 3 years down the line there are significant changes , less sleep more fatigue stiffness is a massive change i just deal with it as an ongoing health management. This week Parkinson's uk launched a new media drive for help , no money is being raised to help with research please if you can donate to PDUK it would go a long way to help.