Hold my hand

Philippe's 226 Blog July 2025

Every Parkinson's journey is different. There are over 40 symptoms, nobody gets them all, but we all get a few, we all progress at different paces and we all deal with this progressive neurological disease in our own way. This is my perspective, raw and honest. My hope is that when you read this, you will pick out just one or two points that resonate with you, just one or two, the rest is just me waffling.

It feels beautifully appropriate to discuss this topic the day after Rosie and I spent the day with four wonderful friends from my first ever job …. back in the 80s. The other day, I had a coffee and a long chat with a school friend from …. back in the 70s ….. wonderful, bloody wonderful.

Today, a bit of Lady Gaga will bring the blog to life.

Hold my hand, everything will be okay

I heard from the heavens that clouds have been grey

Pull me close, wrap me in your aching arms
I see that you're hurtin', why'd you take so long

We've all heard the anecdote, after retirement, your life is so full that it's a struggle to understand how work used to fit into the schedule. That's Rosie and me these days: Grandchildren, golf, ladies that lunch, swimming, children, gym, reading, book club, writing, Duo Lingo French, Duo Lingo Italian, friends, holidays, social media activism, networking, snoozing (that's mandatory for me), gardening, table tennis, motivational speaking and the list goes on. We wouldn't have it any other way.

The common scenario almost every day is that, as the evening draws to a close by about 9 pm, the two of us sit together, chat about the day (yes, we're talking about you!) and watch something on TV, maybe Netflix (other streamers are available). When I get tired, my tremor is exaggerated, so late evening, "Michael" is usually playing up.

At that stage, Rosie reaches across the sofa, takes hold of my hand and the tremor stops, I feel calm, forget that I have and incurable, degenerative, neurological condition - all is good with the world.

So tell me you need me? I see that you're bleeding
You don't need to show me again
But if you decide to, I'll ride in this life with you
I won't let go 'til the end

I am three weeks into taking meds and it's going ok. I have no side effects and the stiffness in my back has eased a bit, my tremor is unaffected but that's fine …… it's a marathon not a sprint.

One of the events that led me to starting on the meds was an open water swim session about about six weeks ago. In 2023, one 500m lap of the Blue Lagoon would take me comfortably under 10 minutes, in early June …. 15 minutes ….. time to take the meds. Two weeks into my Levadopa journey, I dipped into the water again …. 13 minutes a lap – well OK, I'll take that. I think I will target a swim event before the end of the season – I need targets to focus my attention - watch this space, I have something crazy in mind.

Having something challenging to focus on is part of my being, the targets are there to take my hand and lead the way.

So cry tonight
But don't you let go of my hand
You can cry every last tear
I won't leave 'til I understand
Promise me, just hold my hand

Apathy is one of the 40 + Parkinson's symptoms – it's a tough one, and the embodiment of a vicious circle. To be honest, I have had a rough few weeks of CBA (can't be *rsed). I have a non Parky related hip injury which is dragging me down ….. but only because I am letting it. I need to focus on what I can do, not what I can't – GAG (get a grip)

I had a brilliant session with an awesome physio a few days ago, we'll call her Caroline. I went in feeling low, very low as I was focusing on the fact that I have gone from Ironman to Old Man in a very short space of time. I went into the session with a wish list of what I felt I should be able to achieve, even though I knew I couldn't. Slowly, step by step, exercise by exercise, stretch by stretch, move by move, twist by twist, Caroline showed me what I can do. I left with an achievable plan, knowing my hand was being held.

On a separate note, the NHS is a complex beast, getting the best out of it to help you progress requires some caring hand holding, you know who you are, thank you – you are a brilliant friend.

Raise your head, look into my wishful eyes
That fear that's inside you will lift, give it time

The Table Tennis goal for the year is the Parkinson's World Championships in Italy in ….. 12 weeks. Watch this space.

We are at the peak of the Leeds Summer Table Tennis league, it's great fun and I learn about the game and about me every week. One match and three training sessions per week – it's so unlike me to throw myself into something with both feet …..

I play for the H team …. the best team is the A team, then B, C and so on. In the H team, we are all of a similar standard, how should I put this, we know which end of the bat to hold but we're not going to win the league. Playing in a team is very different from the very individual nature of Ironman – your team-mates are watching your every move, they're relying on you, it takes some getting used to. The Community Table Tennis Club I play for is amazing, inclusive and incredibly supportive – there are some absolutely brilliant players who love to help / coach / mentor. I've never really been keen on being coached in anything, but this is an unparalleled opportunity for me to, metaphorically, hold my colleagues' hands. Brilliant.

So tell me you need me, I see that you're bleeding
You don't need to show me again
But if you decide to, I'll ride in this life with you
I won't let go 'til the end

I've been blogging about my journey for over a year now, basically waffling about stuff whilst injecting you with ear worms – come on, they're in my head so why not in yours?

I've had some great feedback – always keen for ways to improve these blogs, so please let me know how I can improve them. Just appreciating that some people are reading this stuff is comforting, my hope is that you will draw out tiny snippets of inspiration and as long as more read these than ghost me, I'll be a happy boy.

So cry tonight, But don't you let go of my hand

You can cry every last tear
I won't leave 'til I understand
Promise you'll just hold my hand

So where am I now? I'm a physical wreck – it's a Parky / Non Parky combo, leaving me hobbling and unable to do many things I used to be able to do but we're not going to let this screw us up. We tackle each symptom in turn, we do our physio, we take our meds, we do everything we're supposed to do – we will not let this beat us, we never ever give up.

Most importantly, I know I will never give up because I know my hand is being held tightly, very tightly. I don't see being vulnerable as being a weakness, I don't think highlighting my tough times as failing, I know I'm not doing this on my own, we get through this together, that is an immense strength.

I know you're scared and your pain is imperfect
But don't you give up on yourself
I've heard a story, a girl, she once told me
That I would be happy again

Do something for me please, remember your hand is being held a lot more than you may realise, go and hold someone's hand, I intend to,