It’s barely after midnight, Jane is fast asleep and I find myself unable to wind down. To be honest, this is nothing new.. As you may know from personal experience; people with Parkinson’s tend to have problems sleeping. We are nocturnal creatures. Tonight is no different; physically I feel pretty bad. I’m struggling to find a comfortable position to just sit and when I try to move it feels like I simply cannot – at first thought.
You see, when you want to move (with Parkinson’s), if it be to just scratch your nose or even turn over in bed, people with Parkinson’s gradually lose the ability to initiate slight movements such as these. Words cannot describe how much of a physically and often emotionally challenging feat this is (particularly at a time like this – long after my medication has worn off, as I give my body and brain a welcome break from medication).
Basically, with Parkinson’s, the small things become big (to paraphrase Andy McDowell in New Zealand).
Sure, the medication gets me moving, it helps. In fact, when it works, I now (4 years in) actually shoot way past the line of ‘optimal movement’ to the point where I am dyskinetic. This too is challenging, but in a different way. Yes, I’m moving and yes it’s a torrid thing to experience day-to-day. It constantly challenges you to what feels like an arm-wrestling match with your own self! It draws unwanted attention and it’s very, very exhausting. But ‘still’ (no pun intended), I would choose to do the ‘disco-needs-ya’ dance (from the upcoming musical debut of ‘Three Parkies and a Piano’ directed by and starring Tom Isaacs) than sit still, inactive, feeling frustrated.
I often say that Parkinson’s is patience. Yet I often contradict myself because, really, I am an impatient patient! What I mean is this; when I tell people that I have Parkinson’s Disease 9/10 times I get a response most of my fellow ‘young’ Parkinsonians can relate to which consists of disbelief, fascination and often pity.
But tonight was different, as I attended a thanksgiving celebration in London organised by the Cure Parkinson’s Trust. Here, along with my wife Jane, I met some interesting and incredible people. Naturally, many who attended had Parkinson’s. It was a fantastic evening for so many reasons but the best thing was that, as Tom Isaacs made his speech unable to remain still with Dyskinesia yet as passionate and humorous as ever, I felt at ease in the knowledge that I wasn’t alone. For once, I wasn’t #1in20parkinsons, I was actually quite normal and accepted. Later, as I found myself ‘wearing off’ and the tremor in my right arm showing up to make it’s increasingly ‘flappy’ appearance, I just let it go safe in the knowledge that the people at the event were more or less familiar with the disease and all that it brings.
Now, for those who don’t know me, have never seen me or met me in person, you may be surprised to hear that I am barely halfway through my thirties, and as I write this blog post I turn 34 today .
Here I am: That’s me below, on the left..no I meant the right.. Can’t you see? I’m the one with the Parkinson’s.
In fact, this is Dominic (on the right) who also has Parkinson’s. Just like me, diagnosed in his late twenties, Dominic has lived with the disease for at least a couple of years.
Apologies for the sarcasm, but I hope you get the point I am trying to make.
As I tweeted during the event:
During the event, I didn’t just meet people with Parkinson’s. I met fundraisers, partners and carers, advocates and champions for the work the Cure Parkinson’s Trust do themselves but that also fund in the pursuit of better treatments and to find ways to slow, stop or reverse the disease.
It was an important event, in many ways. I met some interesting and remarkable people; all with the same hope and genuine optimism that progress is being made towards the Trusts ultimate goal of finding a cure.
I genuinely feel that right now, that if I was always destined to have Parkinson’s, then this is probably the ‘best’ time to have it.
Together we can beat this thing!
Anyway, I’m off to bed. I’ve got my birthday and a day in London with Jane to look forward to and also a quick visit to the Cure Parkinson’s Trust to see the progress they are making.
Until next time.. Keep on raising awareness of Parkinson’s Disease and the real people if affects- please.