Today I am in a quandary; how much of my life should I include in this blog? What are my parameters? I don’t include my family or friends, afterall I chose to write this blog, they haven’t chosen to be written about. Also, I started it for Parkinson’s Awareness, not for Me Awareness, promising that I would not include photos of my food. It is called Parkinality not ‘ParkinandeverythingthathappenstomeInality’ .
Let me explain …
Don’t you just hate those ‘know it alls’? Those people who dole out advice from ‘their personal experience’? Who latch onto a phrase, repeating it at every opportunity.
”Act when your body is whispering’
Am I talking in riddles?
What am I on about ????
When diagnosed with PD in 2012 it was a shock but I had a tiny amount of acceptance as Parkinson’s was now my ‘thing’. I had always thought that everyone has a ‘thing’, and PD was mine. I was armed, dangerous and ready for the challenge with my amazing support team.
Importantly I had ‘acted when my body was whispering’. Meaning my PD symptoms on diagnosis were, although very real, relatively mild and so I was relatively strong and able to deal with those early years following diagnosis head on. I learnt and discussed and became (a proper medical professional called me) ‘an expert patient’.
Now 9 years diagnosed, PD symptoms are ramping up to warp speed. I am almost at the top dose of medications, meaning I am dealing with their side effects. PD now affects all aspects of my life, from putting on my socks, to making pancakes, to sleep, to walking, to talking, eating, scratching, tap dancing, nodding, waving, opening the fridge, skipping, writing, shuffling cards…. etcetera.
I am now facing brain surgery this year … DBS … deep brain stimulation …. to manage my symptoms. I am facing a series of assessments and if suitable hope to have my head shaved and electrodes inserted into my brain.
I might appear to be being a bit blasé about the brain surgery, but to be honest I’m not. However I have had a few years to come to terms with the inevitability of advanced treatments. I am learning all the time and although I am still scared, I am not totally petrified. And I hope that the treatment will reduce my medication and allow me back some of my life for the next few years (although PD will continue to degenerate).
I am now having a bit of a reverse deja vu moment. Hindsight is a wonderful thing, and I did in hindsight have the benefit of hindsight but I failed to act on it.
Again, my body had been whispering new symptoms for a while. I kept half heartedly listening to the whispering but, unlike PD, I acted in a weak, wimpy way. I acknowledged symptoms but underplayed them, I went through the motions (excuse the pun) of visits to GPs had blood tests, stool tests, stays in hospital, suffered a myriad of symptoms but this time I wasn’t proactive. To be honest I was scared. And anyway I already had my ‘thing’. It seemed greedy to have two.
2021 I am having to come to terms very very quickly with the fact I have another chronic condition – Crohn’s has now given up on whispering, skipped shouting and is now screaming at me.
Crohns is now impacting on every aspect of my life. It is serious and it has to be dealt with.
I am now living with at various times; chronic constipation, pain, weight loss, bloating and toileting urgency. Which have got to the point when they cannot be ignored.
I have now been told my Crohn’s is severe and am being prescribed injectables to try and get it under control.
Things are majorly twaddley …
PD symptoms and injections are not a match made in heaven ….
Ideally my Crohn’s needs to be under control before the brain operation takes place.
The injectables will be immunosuppressants – not great during a pandemic … meaning I will need to super shield.
I need to have a series of hospital assessments to ensure I am suitable for the brain op – visiting hospital during a pandemic when I don’t drive and am taking immunity compromising medication is not the greatest
I am petrified.
One day I will use a proper swear … until that day fukinshtinitus.
But I am on the case …. a little late, but better late than ….
So the point … yes there is one.
There will be others who will be challenging me in the Top Trumps of Disease Championships. Who will be living with Pd and dealing with a myriad of other twaddle.
I still don’t intend including photos of my gluten free pasta and dairy free ice cream. Parkinality’s remit will be subtly expanding, to Parkin(andotherstuffIthinkisappropriatetoinclude)ality
Best foot forward
Clean foot back
And do the Ho ho ho keee ko keee
If you find my marbles please post to me ….