An introduction from Declan Moore..
Firstly, I would like to thank you all for providing me with the opportunity to take the Chair of the D<C Network. I am very excited about this opportunity and the possibilities of what we can do with it in the coming years.
As I type, we have sent out the meeting invites from February and I felt it would be good to introduce myself in advance of my first meeting and maybe explain some of the journey that got me here after 6 years learning to manage my Parkinson’s. Actually, that is not true! After 6 years of going to bed wondering what tricks Mr Parkie has up his sleeve for me for the morning, then figuring out how to get through that day with the new rule book. I still find it very hard to talk openly about it and quite often end up a sobbing mess, (another symptom, thanks Parkie).
For the first two years I was treating my condition like my dirty secret that needed to be hidden and protected at all costs. Without even realising it I had started to cut myself off from the world and rarely went out. (Covid helped me a lot with this strategy by closing everything down). I realised that in many ways I was closing my life down, one piece at a time. So some serious self-reflection later, I realised that I was not trying to hide my condition but was not yet able to talk about it. I needed to be able to deliver the information and be in control of any communication that followed so I wrote an open letter to the world and posted it on LinkedIn.
Declan has left the building! (LinkedIn Nov 2022)
I can't believe that I have to write this post. I feel like I have been dishonest, I assure you it was never my intention. Three years ago, when I got my diagnosis when the world was worried about covid and lock down. I thought it was mine to deal with, privately and with the most dignity I could muster. It turns out that Parkinsons has different plans for me and refuses to stay quiet. To the poor man in the cafe that got hit with half of my fried egg I am truly sorry. To the people on holiday that though I was the aqua aerobics Instructor, I really was just trying to get out of the pool. To the people that have helped me up when I have fallen, thank you so much.
Parkinsons will not defeat me or stop me, but it will continue to mess with every aspect of my life and make me look stupld and frail for a percentage of the time, most of the time I am normal (Ish). What Is hurting me is trying to present the old version of Declan to the world and most of my fears and anxiety come from being found out. Like I had sold a broken-down version of what people thought they were buying. I have lost the last three months to this fear, yes, I have been poorly for some of it but most of this time I have been afraid to go out and get on with life in case I got found out. In case my hand shakes or my legs go wobbly, or some random body part goes into full cramp, or even if I flick half a fried egg on to the back of some poor man's head.
It feels like I have to start all over again as three months is a long time, but I have to fix what has been hurting me, hence the weird post. The old version of Declan is no more, gone, left the building and I can spend no more time waiting for his return. The new version is Declan with parkie and I am by no means finished or done, I still have so much to do.
When I press the 'post' button on this I feel I have been honest and open, as it is there for all to read. I hope to get on and go back out in the world and if my hand shakes or my knees wobble, I wont have to spend three days and nights stressing about who saw it and what must they think. As a person that spends most of my working life on my feet, presenting or training I hope you can appreciate how this has hurt me. In fact, it is me hurting me and this stops here and now.
I feel like I should include a bit about me swearing at parkie and telling it to sod off as it will not beat me but to be honest Parkie is here to stay so it is more about learning to work together and compromise and I am getting good at this, most days. I can't lie though, three years in and I still go to every hospital appointment expecting them to apologise for the terrible mistake with my diagnosis, they never do. I wonder if I will always do that.
I guess my big fear was based on people thinking it was all to strange and not want to work with me and if that is the case I really do understand and thank you for taking the time to read this.
I continue to learn a lot from Parkinsons every day, like how angry people can get over half a frled egg but mostly about adapting, adjusting and moving on with my head held high.
Declan
It is still a learning journey and I guess it always will be, but 2025 Declan will not shy away or hide from anything because of Mr Parkie. If I have a tough day and my legs are shaking, I do my tough day with shaking legs. When my hand is shaking, I press on with my day, with a shaking hand. Except at the salad bar in Morrisons, where they make sure I am closely supervised at all times. I never knew how hard it is to put all that salad back in the right places, I did say it was a learning journey!
I am still working at my career and feel so grateful for the support and understanding I have had to make it even possible. To now find myself in a position where I can do the same for others feels like the opportunity of a lifetime. My Mam always said ‘everything happens for a reason’ I think she was right, she always was.
I look forward to meeting you all at the February meeting.