I am pleased to have been asked to write a blog post on the theme ‘Put yourself In My Shoes’ by Parkinson’s UK for Parkinson’s Awareness Week.
So, for starters I suggest we try and get you into my shoes. Size 8 black Dr. Martens boots. No, not necessarily a fashion statement: they are light, and provide essential support for my ankles when I walk. The dystonia I suffer from causes my feet to turn inwards when I walk and a pair of tight fitting Docs makes bit makes it a bit more bearable.
How are you doing with the boots? Got them on? Good. Now pop on this pair of oven gloves and tie the laces.
(It doesn’t really feel like you are wearing oven gloves when you are performing the task, they are simply to replicate the kind of frustration you feel at the complexity of doing this, the simplest of things because you cannot co-ordinate your fingers, or because they have no strength or simply do not respond to what you/your brain is telling them to do.)
Now, let’s put your coat on. You may have some difficulty … What is that? Yes, I was about to say you may have some difficulty getting your arms in. Yes, that’s because of the falls you had last year. You’ve damaged your left shoulder, we think. That’s why you can’t get your arm any higher. Here let me help you. Stay upright though! Don’t start to shuffle your feet! Take longer strides! Don’t … You’ll fall … Oh deary me.
Hmmm! Let’s have a look … I think it’s only a surface wound, I’ve got some iodine and some steristrips upstairs. You take your coat off while I go and get … Oh of course, you can’t can you? Well let me help you get the coat off and see to that cut. Pardon? It’s time for you medication? I see. Well let’s deal with one thing at a time shall we? Let’s get that coat off … Now I’ll just run upstairs and get the … What? You need to go to the toilet now? Is that before or after I clean your cut and get your medication? Before? … You think? OK, in you go.
What? You can’t go now? … I thought you were desperate? Turn the water on! It’ll help.
What? … Oh I see, you can’t go because you still have the oven gloves on …
… Well, you get the picture…
If you were in my shoes this time last year, it would have been a pretty miserable experience, because my shoes didn’t go anywhere. However, thankfully, due to the patience, care and dedication of the Functional Neurosurgery team at the National Hospital For Neurology And Neurosurgery who performed the Deep Brain Stimulation procedure and supported me through the hellishly complex programming; I am able to put my boots on, lace them up, put my coat on, leave the house, walk to the nearest Underground station and travel into London, visit an art gallery, see a film …. Whatever. On my own.
I have a life again AND not only that, but I have been able to reduce my medication to microscopic amounts compared to what I had to take before.
It has not been an easy road The DBS has not worked as well as we might have hoped. My walking isn’t pretty, my speech suffers when I have to increase the level of therapy to counter the wearing-off of Sinemet. But I am learning to work around its limitations. It is not a cure.
But for the time being it’ll do me.
Links to posts on this blog specifically about Parkinson’s and what it is like to live with it. (Please note, the hospital referred to in the East Ward stories is not The National)
Please be aware some of the above contain language of a fruity nature and my not be suitable for those of a nervous disposition.
I ought to make clear is that what you have read is a fictionalised version of my experiences. Also, Parkinson’s, its symptoms and its progress differ from person depending on age, the type of medication they are taking, external stresses and so on. So please bear in mind anything you have read here may not be typical of your own case or that of the person you care for.