I work for Parkinson’s UK (PT) and I retired from my career as a College Tutor a couple of years ago.
Interests: Music, film, playing piano and writing music.
Hi there. So, what makes this blog worth a read, a like, a share or a follow?
All I can say is that when it comes to people with Parkinson’s and the vast amount of vlogs out there, and the growing number of people, just like me reflecting on the ‘illness’ and all the crappy things it brings or the ‘silver linings’ (if you found some let me know) OR more commonly- the huge multifaceted challenges it presents on a daily basis – you are all my ‘PD heroes’.
I have tried all kinds of ways to mentally approach my Parkinson’s (this has evolved as I have – as I have had to). Like with life itself, there are no rules really to living with it – you just try to live the best version of you and believe that people are good, and the world is a kinder place than we know. It is the people you meet in the Parkinson’s community who will change your perspective for the better.
Just because you can’t escape PD doesn’t mean you have to settle, accept it or let it sit with you – you know it’s bad enough that you cannot just shake it off – so all I can do about it is to annoy my Parkinson’s in any way I can and daily. I will discuss how I annoy my PD (and how other people with Parkinson’s do) in the blog. I would say that you should always have a hobby and make some time for yourself… it’s good for your mental health. Don’t forget to live, to laugh and to cry, it keeps it all in check – you’re basically keeping it real. When the medications aren’t working – think about what you’re going to do when they do work – it makes the wait feel somehow not as bad. When the medication kicks in – do what you said you would and try to enjoy it. But don’t forget the wife and kids, family and so on – yes you have Parkinson’s but it doesn’t give you any sort of free ticket or privilege – I made that mistake – after my diagnosis I was a bit me, I had nothing to look forward to, in the beginning, so for a while I kind of lost my way, lost in my thoughts and fearing the future- I lost myself – slowly giving up. It was only when I joined Twitter in early 2014 that I came to realize I was not alone in this – I found Martin in Edinburgh a young father like me – and I also found Zoe in Bury (similar ages, we met up and are still in touch today). I also met Mathew in Manchester (a bit older than me but local and we met) – it was through these interactions and what followed afterwards was a very fulfilling, humbling and extraordinary time in my ‘Parkinson’s life’ – it all made perfect sense when I met Tom Isaacs in the July of 2015 – he became a good friend and mentor to me on so many levels. Later that year I would meet Helen Matthews, Eros, Emma, Tomas, Phil, Rob and Lil (all of them I still know today) – they became my crew, my solace – my energy and purpose. It was a time in my life I look back at with pride and good feeling… despite the brain disease and thoughts of why we became friends in the first place.
When friends with Parkinson’s take action together – it really is inspiring. I am proud we did.
Despite all the illness and steady decline – blossomed so many friendships from a Google Hangout (it was before Zoom) but when things work so well it can be hard not to tinker with the settings, add this and add that – I tried to be everything for everyone (yes it was inspiring and yes- brilliant- a real buzz) but once you go down that path your life will just become too hard to manage – emails, DMS etc – I got carried away and just like everyone else, my symptoms progressed, and life got inevitably harder but all that stuff just broke my back. Plus, it cost me financially. Buying domain names, vlogging gear, the trains, the planes, the lunches and conferences across the world. Expenses. Sure (with gratitude) But what about the real cost – you know. My young family and the time I spent away.
You see, when you positively advocate for the good of the community, if you do it right, let’s say you ace it – people follow you on social platforms, ask questions and take note of what you are saying, asking you speak at an event, make a video or write a blog- it can become almost addictive in its own right. Just try to remember why you are advocating, for who and for what? A cure. You never know better treatments. Great. Better understanding of Parkinson’s?
How do we get there? Who knows. All I know is this time will pass, and your Parkinson’s will get worse. It’s not about numbers it’s about the community you find yourself in and the friends you make along the way. It is those friends who will see you through and you for them.
Though we can’t change what it is happening to us, as people who have a chronic degenerative neurological condition… Parkinson’s. We can control how we react to it, over time, trial and error, and by constantly adjusting the sail as we crash endlessly into the waves of change. You either sink or swim for the biggest battle you will ever experience is in the night at 3:30am when the meds you took before bed wear off when the rigidity and the slowness becomes too much, the uncontrollable sinking feeling, muscle weakness and the recurring need to lie on the living room floor because it reduces the gravity and the pull as you wait for the medication to kick-in – and then, despite all of this, at 6am the alarm clock sounds and you have all the same timelines and expectations to meet as any other person on the daily commute to work, the school run.
Life will not slow down while you catch up. The only way to keep on moving forward is to join another flow of traffic which is headed a different way. But just because it looks different doesn’t make it less rewarding, enriching or worthwhile. After 14 years of travelling on this road I can assure you that it will not be easy (far from it) but, ‘god willing’ or ‘with any luck’- you’ll be ok.
As bearers of it, the only way we can make it easier on all of us is if we become educators, informers, transcribers and If we all do this to a degree beyond our comfort zone then it is us. We, the patient community, who will have more say and greater control over the worlds ability to notice better and hopefully, in time, come to understand what it is we are trying to say.
So you’re stood by the side of the road do you go left, straight or right? Take as long as you need (that’s important) – just don’t look back. Choose the story that you believe in and make the most of it.
We go together. For better, for worse. We need to stick together and not get carried away.
If any of the above clicks with you. That’s great. Just keep it as real as you can.
Advocacy is a good thing. It just is. You are making a difference.