Life is a storm my friend

Philippe's 226 Blog January 2025

"Life is a storm, my young friend. You will bask in the sunlight one moment, be shattered on the rocks the next. What makes you a man is what you do when that storm comes.".

Alexandre Dumas

I want to show that Parkinson's is not a death sentence. The best tool in my armory is hope which inspires me to keep moving forward.

Welcome to my fourth blog. I really appreciate the feedback, it really means a lot. Today, I am waffling about 2025, pinching lyrics from OneRepublic.

Before exploring what I'll have a crack at this year, a quick update on my Parky progress. Parkinson's Disease provides a hearty buffet of about 40 symptoms to choose from. Nobody gets them all, but every-one gets a few. As the brain's ability to produce dopamine reduces, the number of symptoms increases and so does the severity.

15 months post diagnosis, it's going pretty well. My main buffet helpings are dodgy sense of smell, a left sided tremor, a weaker left hand and leg and an increasing lack of suppleness / flexibility. Finally, I do get tired if I overdo it or, ironically, if I don't exercise for a couple of days. On the grand scheme of things, I'd have taken that if it had been offered on "Diagnosis Day" in August '23.

Rosie and I saw my neurologist in November, we agreed that staying off the meds for the moment is fine. Whilst today's drugs can treat symptoms, they can't halt the progression of the disease itself. There are multiple reasons for being desperate to avoid starting on medication, but the main reason, to be brutally honest, is that it allows me to perpetuate the self-deception that all I need to do is exercise and my condition won't deteriorate ……. hmmmm.

In reality, there is every likelihood that my symptoms will become life impacting in 2025, then I will need to take the plunge and enter the complex world of Parkinson's medication – when that happens, I will have to accept that managing my Parkinson's symptoms is more than just hard work, but until then ……

"Hope when you take that jump, you don't fear the fall
Hope when the water rises, you built a wall
Hope when the crowd screams out, it's screaming your name
Hope if everybody runs, you choose to stay"

When I was racing long distance triathlons (Ironman), I loved starting the year with a clear statement of my objectives, however ridiculous or over ambitious, always putting my cards on the table. I am a great believer in self-fulfilling prophecies ……. If I tell everybody I'm going to achieve something, I will work my errrr socks off to smash it.

This year's ambitions are hardly SMART (business gobbledygook for Specific, Measurable, Achievable, Realistic and Timed). They are much more: Proactive and Ambitious, but you're Ridiculously, Kidding Yourself …… it's astonishing that I didn't become a management development guru, isn't it?!

I have every intention of pushing myself hard this year and we'll see what that brings. It's time to work on some old favourites and bring in some new dreams – including competing in the World Championships ….. it would be cool to have taken part in two World Championships in my lifetime.

PARKY objectives (Phil, you're not going to use that mnemonic, are you?) need more than just physical achievements, they need to represent a broad spectrum of activities.

Here's a rough outline of what a typical winter 2025 week may look like. I'll explain …….

"Hope that you fall in love, and it hurts so bad, The only way you can know, you give it all you have

And I hope that you don't suffer, but take the pain"

We're going back to Tenby. Within a couple of weeks of being diagnosed (August 2023), I made the spontaneous and irrational decision to enter Ironman Wales 2024 – it was an action founded on defiance more than anything. Some of you will know, I have 5 (pre Parky) Ironman Wales finishes to my name – Tenby holds a huge, life affecting, emotional attachment for me. It's my sporting Nirvana.

Having deferred my place to 2025, I can't defer again and I can't get my money back. So the accommodation is booked and we're heading back to Pembrokeshire in September.

There are many stepping-stones on the way to Goscar Rock at the start, and many more than that on the way to the Esplanade 226km later at the finish. In reality, there is almost no chance that I will finish, but my victory will simply be to be on the beach, in my wet suit, at dawn on race day. To experience the opera singer belting out "Hen Wlad Fy Nhadau" to 2000 potential Ironmans and 15,000 supporters is life affirming.

"Hope when the moment comes you'll say, I, I did it all, I, I did it all

I owned every second that this world could give, I saw so many places, the things that I did"

I have to remind myself that I am a triathlete, my PARKY objective is to be on the beach on 21st September. My bike still has my race number from the last time I rode it ….. in September 2022 – shocking. My wetsuit got one outing last year so not much better.

I must up my game.

High Intensity Interval Training (HIIT) is a critical part of my Parkinson's day to day exercise regime. It gives me my dopamine, to the extent that if I miss a couple of days, my Parkinson's symptoms significantly increase.

Together with indoor rowing, Cyclone classes at the gym are my HIIT sessions of choice. The Watts you produce, together with your Revolutions Per Minute are displayed on a big screen, together with the other 40 cyclists. Theres's no hiding – I love it. Cyclone will remain the lynchpin of my training throughout the year.

I also need to get my backside in the pool. That will be an interesting challenge as my left arm is now significantly weaker than my right. If I don't do something about that, I'll be swimming around in circles!

When the spring comes ….. we dive in the lakes and hit the road.

Yeah, with every broken bone, I swear I lived, Hope that you spend your days, but they all add up

And when that sun goes down, hope you raise your cup

There will be plenty of hiking with my former Vocalink colleagues. Plenty of summer wine left.

I must admit, I have a yearning to go back to Horton in Ribblesdale too ……

I wish that I could witness, all your joy, And all your pain
But until my moment comes, I'll say, I did it all, I, I did it all

For an 8-week period last summer, I took part in a pilot for Augmented Reality kit made specifically for People with Parkinson's. My daily routine included an hour of pre-set exercises which worked on some of the Parkinson's symptoms including strength, flexibility, reactions, coordination and speed. I loved it.

The kit is being developed by a UK company called Strolll with investment from the NHS and Parkinson's UK.

In December last year, I had a couple of meetings / discussions with Strolll and the NHS Physio research team to explore the possibility of me becoming a Strolll Brand Ambassador – that would mean Vlogging as well as Blogging – I can sense the world-wide excitement already!

I will keep you posted.

I owned every second that this world could give, I saw so many places, The things that I did

Yeah with every broken bone, I swear I lived

Table Tennis World Championships. Did I mention I raced in the Ironman World Championships in 2017 in Hawaii? If you didn't know about this, we should meet up some time and I will tell you all about it! Until the 14th October 2017, the idea had always been for my book's final chapter to focus on those 226km of Swim, Bike, Run on the Big Island. That didn't really turn out as planned. Since then, I have constantly searched for that perfect vignette to finish the story. Well, I think I've found it!

Rob, an inspirational new friend from the Parkinson's community, has re-introduced me to Table Tennis. I have played table tennis once in 40 years so it's great to be playing again. Table Tennis is fantastic for People with Parkinson's, it supports and develops agility, hand eye co-ordination, strength, cognitive ability etc. which can be impacted by Parkinson's. It's fantastic. Parky Ping (no ….. that catch phrase is not my handywork) is an integral part of my weekly exercise routine.

We are waiting for confirmation, but the strong rumour is that the Parkinson's Table Tennis World Championships will take place in Northern Italy in November. What a great target for 2025, to take part in the Table Tennis World Championships – we will work hard and make this happen.

What next for this blog and my general waffling?

I enjoy writing these blogs – they help me fight apathy, another Parkinson's symptom. As long as I can think of something to waffle about, I'll keep going.

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

Irrespective of what happens in 2025, by the end of the year, we will have everything needed to finish the book. We'll get the it on the shelves, and shortly afterwards it will be available at all good car boot sales. There will be signed copies, but the real rarities will be the unsigned copies.

To summarise the PARKY objectives (that's an appalling, unusable mnemonic!), we're going for it – time to work my socks off and see what the year brings.

Most important of all, I get the chance to be the best grampa – amazing!

Time to bask in the sunlight.

Just Keep Moving Forward.