Philippe, you have Parkinson's

Philippe's 226 Blog April 2024

However incredible the journey to Hawaii was, my experiences at the 2017 Ironman Word Championships left me looking for that one final test, that one "win" that would allow me to accept to myself – "that's a happy ending Phil – you didn't quit!" After six years of searching for that ultimate challenge …. it found me!

Chairing a meeting in a large boardroom at the University of Leeds in January 2023, I scanned around the 20 colleagues and found that, much to my amusement, the whole table was shaking. Somebody was clearly messing about or they were very nervous. On the verge of saying something humorous (funny to me at least!), I happened to look down at my left leg which was resting against the table …. tremoring vigorously! I refrained from delivering my hilarious quip, relaxed my leg and it stopped, OK Phil, that was weird ……. move on!

Chatting with Rosie over the next few days, we agreed that the first part of our investigation into the tremor was to cross off some basics. So:

• I cut down on my caffeine intake – the last couple of years of tiredness had stimulated quite a significant coffee addiction!
• I reduced my obsessive attendance and every available spin class available – maybe I had some form of trapped nerve in my leg!
• I spent time relaxing everyday – I don't think I am stress-head but you never know!

A couple of months later, the tremor was still there, so a trip to the GP would let me know the score …. wouldn't it?! We had a couple of good chats, discussed possible causes, and the GP suggested that the next possibility to tick off would be essential tremors! Never heard of that! Essential tremors is a neurological condition that causes involuntary and rhythmic shaking. Whilst this was, in theory, a logical step, I did get the impression we were discounting causes rather than targeting the elephant in the room!

After a GP practice conference (always good to be talked about!), the doc recommended Beta Blockers – I remember those – didn't some dodgy snooker players take those back in the day to calm the nerves? The rationale was that if the beta blockers worked – we knew I had essential tremors, if they didn't work – we knew I didn't. When the GP explained that one impact of the Beta Blockers was a decrease in heart rate – I shuffled uncomfortably. I explained that my resting heart rate is 50 and my sleeping heart rate is 40 – I wasn't keen on taking a drug that would drop my pulse below 40 overnight! Not sure I'd sleep!!

Rather than keep dancing around handbags, Rosie and I decided to pay for a private consultation with a Neurologist. A sad reflection of where we are today, but we jumped straight to the front of the queue. After 30 minutes of discussion and basic checks he looked me and the eye and told me:

"Philippe, you have Parkinson's"

I remember thinking "can we go back to dancing around the handbags please?"

The rest of the conversation was a bit of a blur, but it did end with me bursting into tears on the consultant and squeezing Rosie as tight as I could. I had seen this coming for a few weeks (Rosie somewhat longer), but when it hit ….wow! I couldn't get out of the hospital fast enough.

My consultant told me that he was sure that I have Parkinson's, but he did give me the option of a DATscan to validate this. Why not?

Result: "Philippe, you have Parkinson's"

This is my perspective, and the opinions and interpretations are mine!

It's worth saying at this stage, that the medical community's understanding Parkinson's is not an exact science – there are many perspectives, many management techniques and many treatments – some of the probably accurate, others clearly bullsh!t! These blogs represent my view, developed from taking on board some research recommendations and ignoring others.

My perspectives is almost certainly a combination of accurate stuff and plenty of bullsh!t! ….. but it is my bullsh!t!!

Why am I writing this blog? I will find it stimulating and therapeutic. Hopefully you'll find it interesting and let's face it – I'm a nosy self-publicist!

One of the aspects I will cover in future blogs is the stigma associated with Parkison's. Am I nervous about opening up about very personal aspects of my life? No! Would I be nervous if I had not retired and my professional "brand" was at risk of being tarnished by Parkinson's, losing me work ???? I am not so sure!

So what is Parkinson's?

Parkinson's Disease is a chronic degenerative disorder of the central nervous system. Essentially, my brain is slowly losing the ability to produce Dopamine. As a neurotransmitter, dopamine is involved in: Movement, Memory, Motivation, Behaviour, Cognition, Attention, Sleep, Mood, Learning. Producing decreasing levels of dopamine impacts on some or all of these. There are over 40 known Parkinson's symptoms, nobody gets all the symptoms – It has been described as the world's worst buffet – and as many of you know, I do enjoy a buffet!

The reality of the buffet of 40+ Parkinson's symptoms is that no two PWP (People with Parkison's) are the same. The medical world has decided that there are broadly five Parkinson's stages. These are my words, with my perspective and my emotions:

Stage 1: where I am now! I have tremors in my left foot and increasingly my left hand, I can control these by consciously relaxing my muscles. There is an element of stiffness in the back and legs. My swimming, cycling and walking have shown a clear reduction in power on my left side. I am proactively working to reduce that imbalance. Do you know what? It's not that bad! Life is good!

Stage 2: my symptoms will worsen, potentially affecting both sides of the body, with tremors and difficulty moving, some of the other 40 ish symptoms may start to kick in …. Swallowing? Sleeping?, Rigidity?, Freezing? - Do you know what?, we'll delay hitting stage 2 for as many years as possible (yes we can make it many years) and deal with the extra buffet portions when they arrive.

Stage 3: we'll be entering the fun zone at this stage! balance and coordination will be affected, with increased risk of falls together with potential cognitive issues. Independent living will be feasible but with some support required. Do you know what?, we're not thinking that far ahead! This could (this will!) be well over a decade away.

Stage 4: it's become very challenging now, and walking aids will be needed. I am likely to have helped myself to a few new items on the buffet! Independent living will be impossible. Moral of the story – don't get to stage 4.

Stage 5: the most severe stage, with loss of mobility and full dependence on others.

Hindsight!

Whilst the tremor in my left foot was the symptom I focused on for the formal diagnosis, hindsight reminds me that the last three / four years have seen me:

• feel increasingly tired (for example, a DNF at Ironman Wales just three months before the start of tremor now makes sense)
• become increasingly stiff, (for example the worn-out rubber seal on the driver's side door of our car shows I have been rolling out (not stepping out) of the car without noticing
• realise my sense of smell has become variable, or arguably non-existent. I'll tell you the "Asda hot chicken" story one day!

The reality is that, like many PWP, I have had Parkinson's for several years now.

Just say no!

The one decision I made in the fog of the latter stages of the Consultation was to decline the option of Parkinson's drugs …. for the moment. With no scientific evidence, I believe I am in the minority of PWP. Most start on the drugs within weeks of diagnosis.

My current perspective on the plethora of drugs available to PWP is that once you start, you can't stop! And once you start, you are on a never-ending upwards slope (or downwards depending on which way you look at it)!

So when I decide to say yes to the drugs, it will be because Parkinson's is significantly impacting my quality of life and today ……. it's not! You could easily argue that by declining the drugs at this stage, I am in denial …. If I don't take the drugs, I don't really have Parkinson's ……… it's a fair argument!

So many positives

"We have all the time in the world!"

Heading home from the Consultation, we realised there were many things to think about, this was going to change our lives entirely. The reality is there's no rush! As bad as things were in the 10 minutes following those three fateful words, that's as bad as it got. The more we thought about every aspect of the diagnosis, the brighter life got. There are many, many positives, life has got better every day since those fateful 10 minutes on "P" Day.

• A lot of data points to Parkinson's having straight line progression – if your initial symptoms develop slowly, the progression is likely to be slow.
• Data also suggests that PWP who display a tremor as one of the first symptoms tend to progress more slowly
• I'm blessed I was diagnosed age 59. Many of my fellow PWP were diagnosed much, much younger than me
• Exercise driven management of Parkinson's is one of the few common recommendations in pretty much every study of the disease. I love exercise!
• Parkinson's Disease is bec1oming increasingly high profile world wide – e.g. through the incredible and inspiring efforts of Michael J Fox in the US and the Movers and Shakers in the UK. This can only be a positive.
• AI has to increase the speed towards a cure doesn't it?
• I feel blessed that Parkinson's doesn't generate hair loss – phew!.

As a couple, Rosie and I are not thinking of my Parkinson's journey beyond ten years – let's enjoy life!

Giving something back.

Many of you who have spent time with me know I randomly throw out song lyrics. We were watching a Disney film with the grand children the other day ….

"Some say eat or be eaten
Some say live and let live
But all are agreed as they join the stampede
You should never take more than you give"

I am committing myself to

• Continue my motivational speaking – my story now has an interesting twist, or should I say shake!
• Start blogging
• Finish the book – at last
• Engage in Parkinson's support groups
• Engage in pressure groups to increase awareness which will eventually lead to increased funding and ultimately a cure.
• Offer my body to medical research! 😊

What next for this blog?

This first blog has been a bit of a meander through the complex world of my mind since my diagnosis in August last year. In future blogs, my intention is to focus on specific topics – like exercise challenges, drugs and management of specific symptoms,

This will always be an unscientific, unsanitised view of my specific experience of Parkinson's. Your feedback would be very welcome on this.