‘Be a voice and not an echo’ comes to mind.
(Excuse typos!)
The problem is I am losing my voice, i am less mobile than ever. So I begin to rethink my life, naturally.
Parkinsons advocacy is not something I have actively engaged with for years now. Despite my young age (well 42.. but with a third of my years living with PD) I have been through a lot. I have done everything to share my journey etc – The only thing I have never done is printed media- by this I mean newspapers etc I’m hugely against it.
I do think more truth, more exposure, a more transparent representation of advanced Parkinsons is needed. It’s complicated to represent ourselves as person with Parkinsons , as the disease gets harder, the apathy and the multifaceted physical affects of Parkinsons takes hold.. from personal experience (dx in 2011 at the age of 29) and from knowing people who have lived with the condition for varying periods – the disease only gets harder. Yes, my stubbornness, my impatience, my views, my perspective, my level of commitment to ‘the cause’ has changed.
The level of dependence on loved ones increases, as does the level of stress on your ‘care partner’ – it’s a whole sh#t show of loss, despair and unspeakable physical upheaval, increasing symptoms, loss of balance, loss of walking unaided- all before I have reached 43. Yes, we have an amazing community, yes we have some chances / opportunities for ‘therapy’ but they are all just polish, an elixir, a big bucket of grease to smooth the transition but NONE of these will stop the former : the advancement of symptoms. Holding off treatments. Dodging dyskinesia for as long as you can or that exercise is gonna slow it down.. maybe it will. But it’s not reversible (this is bull sh..) – the fact is, the ppl closest to u will learn to understand , be sadly…Forced to really (if they stay , then you’re blessed in more ways than u will ever imagine) and care (this is golden) – but they will never feel your Parkinsons (I wouldn’t wish this disease and its wrath on anyone) – the disease is on you, as is the increasing dark forces on ur motivation to keep going, to keep repeating what u just said (clear in ur head) but sometimes completely inaudible to the average joe- that’s a real test of self discipline and mental strength- as is the decreasing mobility and reliance on walking aids (with all respect, don’t lecture me on exercise to avoid falls and how we can dodge it – how dare you simplify a highly complex neurological condition to just a couple of exercises) – apathy can be so heavy sometimes and affects me more than I will ever admit to myself and others.
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I could say more. Reveal more but my meds are wearing off (my Parkinsons is both sides – I’ve advanced over 13 years – diagnosed August 31 2011 – it’s fact that it will ultimately get worse).
It all comes down to how you find pockets of mental freedom within this ocean of compression of everything that used to just float , no gravity, no leakage- no Parkinsons. This is me signing off for a while. At least for the summer.. I’m going to seek a better way to do it.
Stay well folks x
(ds)
