On November 20th 2017, I received my diagnosis of Young Onset Parkinson’s Disease, on November 22nd I was with my youngest brother watching my favourite band (I will let you guess or google who, if you’re interested) at The O2, London. Life had already moved on! I had a great time & a good few beers too!
But since the Summer 2017, there had been a little worsening of the impact on my daily life & now writing this another 4 months later a little worse still. All micro changes but accumulative.
So back to reality – my brain is buggered. Or at least is degenerating ahead of time. This is the core of the enormity of an early onset PD diagnosis & is why it suddenly fundamentally changes your life. And as I have said before, if it were possible to have a personalised prognosis, it may provide a better sense of perspective, as it could be that I will have just have a mild ‘form’ of PD and have a more normal life.
It’s important to realise that accepting & getting on with life with Parkinson’s, then getting down again and feeling a bit sorry for oneself, to getting positive again, is all par for the course. So this may not be the last negative post!
However, I know we should all just enjoy life and seize the day. I feel lucky to have a heightened sense of wanting to savour the moment, it is just unfortunate that it took PD to make me appreciate my life more. For most people I think it’s hard to truly seize the day or enjoy every day for the little things. Even with early PD it is hard as life simply goes on and you get caught up in everything you always did before . Take today, we went to a 6 year olds birthday party in a soft play centre for one of my son’s school friends. I joined in with the kids climbing, sliding, and chasing around this huge climbing frame & had a lot of fun. I was slightly aware of the challenge PD will bring to these sorts of things & perhaps I should have been more embracing of the opportunity given it will become harder to do.
This is the saddest thing , I now have a limited amount of time to do things that may become difficult to impossible to do. So playing football with my son or clambering around soft play centres (luckily we’ve done a lot of that one already), running, sailing a yacht, skiing (I have never been), smelling my wife’s perfume, keeping up in conversation, having a steady projected voice, having a good booze up, working a computer mouse or keyboard with speed, working full stop, climbing a ladder, changing a light bulb, using a screwdriver, remembering a meeting or people’s names, eating and swallowing properly, tasting great red wine or the subtleties of a delicately flavoured Michelin star meal, buttoning up a shirt, keeping still, sleeping normally, feeling elated, travelling on long haul, starting a business, building a treehouse, walking the dogs, washing the car, driving a car, racing a car (not that I was ever going to do that), finely chopping an onion, taking my son fishing, wrapping Christmas presents to my exacting standards of precision, opening a tin of beans, holding a cup still, smiling, laughing and so on.
And the bigger questions : Will I make it to my son’s wedding? (He’s only 6). Will I meet a grandchild? How long will my wife & I have together in retirement? How long do I have with a reasonable quality of life? How long should / could I work for? How long before I need DBS or will the drugs serve me well for a relatively normal life? How long have I got to live?
All these things, to a large extent are now (& always were) just a question of time!