World Parkinson's Day and Me - Boxing, ballet, bikes and broadcasts.

11 April.

World Parkinson's Day.

A day which I wish didn't come to mean so much.

It's one day when the world may become a little more aware of what over 150,000 people live with everyday in the UK.

I am one them. I still have it. Except for a miracle, or a significant breakthrough in research, I always will. It's getting worse. That's what Parkinson's does.

But it's not all grim. A lot of it is. But not all of it.

I've met and am meeting some incredibly resilient and encouraging people with Parkinson's. I've got good support around me. Despite the fractures in our NHS, so far I've not gone without support. Although, I do wish I didn't need to have the support of physios, speech therapists, bowel specialists & benefits specialists. I've been forced to reduce my work capacity by fifty percent. Fatigue is extreme. Movement is awkward. I've fallen down stairs, fallen into shop displays, looked like a drunk and forget the names of people I've known for years. But others inspire me to keep going, because they have.

I considered doing a PhD after my MA a fews ago. I've had to forget that idea now, but I still see the value in research and am enrolled in three Parkinson's research projects instead. I've added boxing to my exercise routine and even been to ballet classes for people with Parkinson's. These things help keep me riding a motorcycle and stop me falling over or freezing. I've stopped most public speaking, but do more radio and video, because I don't have to interact with crowds that way. I want to write more, but my stiffness in my hands and poor dexterity make that hard. But, I am finding ways to to stay creative and keep communicating what's important to me.

Sometimes it's lonely. Sometime's a crowd is too much. But I don't feel abandoned, by God, my family, my community or my tribe. And I'm grateful to all those inspirational people with Parkinson's I have met and interacted with in these early stages of my own road with Parkinson's. They're absolute heroes. It's a club that no one wanted to join, but now can't live without.

I wrote the following piece two years ago. I think it still captures something of my mood then, and now.

You can also listen to my BBC Radio Wales documentary, Parkinson's & Me, for 'All Things Considered' to be broadcast at 9am, Sunday 14 April, 2024 (Produced by Geoff Ballinger & recorded over a three year period) Programme Available Here I hope you find it an encouragement

Homepage | Parkinson's UK
Picture from Parkinson's UK, 'There Isn't One Parkinson's Journey' - and yes Sean is in there somewhere!

(Below Text, Originally written 11.4.22)

So, 11 April is World Parkinson’s Awareness Day. I have to admit, this time last year I didn’t know there was such a day. I was certainly aware of Parkinson’s though. My good buddy in Melbourne, Marc, was diagnosed many years ago as a young man and I’ve seen him and his family live & struggle with this condition in over two decades since. He has been an inspirational friend and fellow leader throughout.

It’s a degenerative neurological condition that currently has no cure. It can have over forty different symptoms in any combination and intensity. Everyone’s Parkinson’s journey is different and this time last year our family also joined this unpredictable road.
Nobody really wants to have the need of a neurologist in their life, nor a need to understand why dopamine is important, but here we are, I’m twelve months on from hearing my GP say, ‘I think we need to get you to a neurologist sooner rather later’.
I’d been having tremors for quite a while. I put it down to possible nerve damage from various orthopaedic surgeries and injuries. Then my dexterity went, I kept dropping things, tripping over stuff, my voice got weak, I was permanently exhausted, lost weight too easily, my body was becoming inflexible, and I started to experience intense internal vibrations, (something like a drill on hammer action or a tattoo needle going into your skeleton).
At this point, nothing was off the table in terms of the many different neurological conditions.
When it was hard to get medical appointments, I was seen face to face all the way through a referral process, which I’m incredibly grateful for. Very quickly the consultant neurologist confirmed I had Parkinson’s.
I began taking medication immediately and in the subsequent months, have found a balance that brings some relief from many of my symptoms at the moment. I have had speech therapy to help with maintaining my vocal strength. Rigorous exercise, diet and stress reduction are also major players in helping to reduce the potential progression.
But so much has changed and is changing. I have had to reduce my expectations of what I can do in a day. It can make me feel frustrated, exhausted and vulnerable. Quite frankly, it’s horrible. Everything is slower. My thinking, moving, eating and writing.
So as I work all this through, as we as a family navigate these unpredictable waters, I am comforted by the words of our GP.
After my diagnosis, my doctor explained the support that is available from a dedicated NHS Parkinson’s nursing team, and also Parkinson’s U.K. Charity, (both of which have been brilliant), she acknowledged that ultimately it will be our faith that will get us through this.
At the end of writing ’God’s Biker’ I concluded with a train of thought about what loving God with all our heart, soul, mind and strength looks like when we come from a place of vulnerability and poverty of spirit.
I don’t like what is happening in my brain and the effect it has and will have on my heart, soul, mind and body, but I’m grateful for the threads of God’s providence that my faith has matured to a place of being able to accommodate the ‘it’s not fair’, and the ‘why us?’ stuff. Lament is an acceptable and important response at times. I still intend on giving my ‘all’, it’s just a little different now, but it’s still me.
So, on this Parkinson’s awareness day, my apologies for springing a bit of a surprise on many of you. We’ve needed time to adjust. I’m still doing a lot of what I was, but slower, (still riding for a long time yet, less public speaking & pastoral work though, but plan to write and broadcast more), but I have needed to effectively halve the size of the shovel I use. The next challenge is halving the size of the truck that turns up each day to be unloaded. So bear with me if I say ‘no’, when perhaps before I will have said ‘sure, no problem’. I'm very conscious I find this hard.
In the meantime we’d appreciate your prayers and understanding if I seem a bit, ... different, at times. Thank you x
If you want to know more about how Parkinson’s, which is among the fastest growing neurological conditions in the world, affects people, and support research to find a cure, check out the Parkinson’s UK website.