Three days / two nights that will change my life forever

Philippe's 226 Blog June 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 ways. This is my perspective, raw and honest. I see managing Parkinson's as an art more than a science, so I don't mind being judged, and I certainly don't judge other People with Parkinson's (PwP), I learn from them.

Today, I am using Pink Floyd to bring the blog to life.

Wednesday 18th June 2025

Hello?,  Is there anybody in there?

Just nod if you can hear me, Is there anyone at home?

Come on now, I hear you're feeling down

Well I can ease your pain, Get you on your feet again

Relax, I'll need some information first

Just the basic facts, Can you show me where it hurts?

It's Wednesday, just a normal day in the Evans household. I've been to the gym and will go for a swim later, Rosie is playing golf. The garden's a mess and we've got loads to do on our task list whiteboard. It's just a normal day, however I have a question on my mind …….

Do I or don't I?

I was diagnosed in August 2023. Whilst most of the conversation after my consultant said "Philippe, you have Parkinson's" remains a blur, I do recall he asked me how I felt about medication:

"I want to stay off the drugs for as long as possible"

"No problem, that will always be your choice"

As I retrospectively psychoanalyze myself almost two years later, my rationale was that if I stayed off the meds I could:

• exercise my symptoms away
• tell myself I am in full control of my life
• delay the predictable and uncontrolled decline into dyskinesia
• avoid the many side effects of Parkinson's medication (nausea, compulsive behaviour, tiredness, brain fog etc.)
• delay the day when I am taking up to 30 tablets a day
• delay the day when the drugs lose their effectiveness through long term use
• avoid the occasional panics when pharmacies run out of my meds and supply "the next best thing"
• pretend to myself that I don't really have an incurable, progressive neurological condition

Some of the factors above are valid, some irrational, but they are my perspective.

Fundamentally, my headline mantra was that as long as Parky wasn't impacting my life, I would stay off the meds.

Have you ever heard the boiling the frog metaphor? If you drop a frog into a pan of boiling water it will jump out, if you put the frog in a pan of cold water and slowly boil the water, the frog will stay in and eventually suffer the fatal consequences.

My symptoms have slowly developed over the last two years. My favourite symptom is my tremor, it doesn't bother me at all, in fact I quite enjoy it and I am pretty sure most people find it incredibly sexy.

But Parkinson's is not all a bed of roses ….. everything aches, I've gone from Ironman triathlete to old man in a short space of time. This perception was brutally brought to life a couple of weeks ago at the Blue Lagoon, my favourite open water swimming venue. Each lap of the gorgeous spring fed lake is 500 metres long which I used to be able to knock out in comfortably less than 10 minutes. This time, it was over 15 minutes ……. I understand the safety crew were on their radios expressing concern about how laboured I looked. My 40 minute drive home was emotionally tough, I was devastated. I had expected a reduction in pace but bloody hell!

Whilst athletic performance is not a good measure upon which to base life decisions, my swimming (and my cycling as it turns out) is actually representative of other stuff that's slowing down.

Well, I think it's time to jump out of the pan and to be very honest, I am scared! I will sleep on it.

Thursday 19th June 2025

There is no pain you are receding

A distant ship smoke on the horizon

You are only coming through in waves

Your lips move but I can't hear what you're saying

When I was a child I had a fever

My hands felt just like two balloons

Now I've got that feeling once again

I can't explain you would not understand

This is not how I am

I have become comfortably numb

I didn't really sleep. My appointment was at 11, so my morning was spent pottering around, doing nothing, waiting, tick tock tick tock.

From what I have gleaned from various Parky support groups, NHS support for PwP is patchy across the UK. There are anecdotes along the lines of "I haven't seen my nurse for three years", "I've never met my consultant".

If you are interested improving the situation regarding NHS support for PwP, please have a look at this petition "The Parky Charter" aimed at improving support for the dreadful disease, currently with 155,000 diagnosed in the UK and increasing fast.

Increase funding for people with Parkinson's and implement the "Parky Charter" - Petitions 

I am very lucky as, since my diagnosis in August 2023, I have never felt lacking in NHS support, two nurse appointments and two consultant appointments. Long may it continue.

Emma is my Parkinson's nurse, she is ace; knowledgeable, calm, sympathetic, laughs at my jokes, what more could you ask for? We first met shortly after my diagnosis, so it was great to have that consistent view on my evolution. Once you've been diagnosed, there are no more scans, just standard questions and pretty basic tests. We went through the assessment: movement, flexibility, cognitive power, lots of other stuff. I was especially good at the finger tapping test.

"That's very good Phil"

"Thanks, Emma, I was practicing in the waiting room, I bet everyone does that"

"No Phil, only you."

"oh"

Rosie was with me to provide balance from an observer's perspective. She's my hero, I am a lucky boy!

Once the standard tests were done:

"Emma, it's time. I'm ready for the meds"

At this early stage of my journey, there are broadly two sets of options:

• Levodopa is used to boost dopamine levels depleted by Parkinson's.
• Dopamine agonists help make up for the lack of dopamine. Whilst these medications do not convert to dopamine in the brain, they have the same effect.

We agreed the meds approach and discussed the side effects, hmmm, there are a lot of those. Let's not overthink this.

Three tablets a day, monthly repeat prescription, funded by the NHS as I am seriously old. Logistics seem OK.

Good to go.

Friday 20th June 2025

Okay, Just a little pinprick

There'll be no more, ah, But you may feel a little sick

Can you stand up?, I do believe it's working, good

That'll keep you going through the show

Come on it's time to go

There is no pain you are receding

A distant ship, smoke on the horizon

You are only coming through in waves

Your lips move but I can't hear what you're saying

When I was a child

I caught a fleeting glimpse

Out of the corner of my eye

I turned to look but it was gone

I cannot put my finger on it now

The child is grown

The dream is gone

I have become comfortably numb

It's Friday, just a normal day in the Evans household. I've been to the gym and will go for a swim later, Rosie is playing golf. The garden's a mess and we've got loads to do on our task list whiteboard.

I slept well. We've got this!

• We take the meds (three a day for starters)
• We exercise – swim, bike, walk, weights, pilates, core
• We focus on the left (Parky) side – use it or lose it
• We Strolll
• We play competitive table tennis – world championships in October.
• We re-learn Italian as the world championships are in Italy
• We're ambitious with our targets – Ironman Wales swim in September
• We eat healthily – come on Phil – cut out the pies
• We don't think too far ahead – 12 months max
• We write – blog, book, socials
• We inspire – never ever give up
• We support
• We care
• We love

We've got this.