Introduction
Five years ago, life was predictable: work too hard, fly too much, exercise too little. Then came the plot twist – first suspected Parkinson’s, now PSP. Before all this, I was a “boring” dad and husband with a knack for spreadsheets and impulsive decisions. Redeeming qualities? Stubborn as a mule, faith-driven, surrounded by great people, and armed with a sense of humor that finds the absurd funny. Oh, and resourceful – because being a Partner of a Big-4 Consulting firm prepares you well for coping under immense pressure (and how to write without putting people to sleep).
When ‘PD’ entered the picture, I made an intuitive decision: start a blog. At first, one post every six months. Then six minutes. It became my therapy – and somehow useful to others: patients, caregivers, friends, even a few doctors who overlook my lack of credentials but respect my perspective as an annoying patient.
Now the story’s darker (but still full of faith, positives, and absurdity). PSP – Progressive Supranuclear Palsy – is a rare neurological disease that messes with balance, movement, speech, and even eye control. It’s like Parkinson’s but with extra chaos and effectively no treatment options. Most people haven’t heard of it because patients are diagnosed too late to make noise, and caregivers are too busy keeping loved ones safe to shout. To see a simple overview of the symptoms and stages please refer to this post – https://benlazpsp.com/2025/11/23/progressive-supranuclear-palsy-psp-understanding-symptoms-and-stages/
I’m grateful for the cognitive clarity I still have and pray it lasts, so I can keep charting this journey for myself and anyone who finds it helpful. Despite the challenges, I’ve found true friendship and deep respect for the warriors – patients, caregivers, and medical pros striving for better. And none of this would be possible without my wife and family, who do the real work while I write (and learn to drive an electric wheelchair like a Formula 1 rookie).
Blog Guide
I’ve organized the blog into five chapters:
Chapter 1: PSP: My Personal Journey
Chapter 2: What I’ve Learned About PSP
Chapter 3: The Intro and Early Years of PD / Early Warning Signs of PSP
Chapter 5: The Pump and Time Leading Up to Diagnosis with PSP
Below is the full table of contents – every post, linked and dated, pulled straight from the originals. For the full blog, head to benlazpsp.com. More posts are in the works – drop me a line if you’re navigating this too.
Chapter 1: PSP: My Personal Journey
Raw, real-time posts from the trenches.
Post Title | Publication Date | Link |
Beyond PSP: Lessons from an Unchosen Journey | Nov 2025 | |
Progressive Supranuclear Palsy (PSP): Understanding Symptoms and Stages | Nov 2025 | |
End-of-Life Planning: The Essential and the Absurd | Nov 2025 | |
Perspective – Genuinely Another Good Week | Nov 2025 | |
The Eerie Silence of PSP: Navigating a Journey Without Treatment | Nov 2025 | |
Audio Enabled – Why I Acted Immediately | Nov 2025 | |
“Your Illustrations Are Great! Is That Your Profession?” – And Other Surprises From My Blogging Life | Nov 2025 | |
Squeezing the Last Drop from End of the Toothpaste | Nov 2025 | |
Greatest Inventions – The Shower Chair | Nov 2025 | |
Reflux – Welcome to the Party | Nov 2025 | |
Fighting my demons – And Winning (Just) | Nov 2025 | |
Finding Joy Amid PSP: A Bowl of Meat Sauce and a Guitar | Nov 2025 | |
Felled and frozen by a dog bone – we move on…to downstairs! | Nov 2025 | |
5 Goals/Shifting tactics | Nov 2025 | |
Enough with PSP… Other People Have Lives Too
| 2025/11/11 | |
Truth or Not: Am I Being an Honest PSP Blogger? | 2025/11/10 | |
Time to decide what matters… | 2025/11/08 | |
“No Way”: The Tiny Spoon Thickener Catastrophe 🙂 | 2025/11/07 | |
Hope | 2025/11/06 | |
On Behalf of “They” | 2025/11/05 | |
Adaptation | 2025/11/04 | |
Weirdest 24 Hours Ever: The Utter Absurdity of Living with PSP (Feeding Tube, Terrified, Toy Cars, Food Success, Toenail) | 2025/11/04 | |
Slow Down!!! | 2025/11/03 | |
The Sad, Beautiful, Yet Quiet and Forgotten Voice of PSP | 2025/11/02 | |
24 Hours On: We Have a Clear Plan, Need a New School Bag, and Definitely NO Air Bag | 2025/10/31 | |
Strike 2: A Terrifying Fall, My PSP Wake-Up, and Why I’ll Keep Writing | 2025/10/30 | |
Apathy: “He Is Not My Husband Anymore” – A Patient’s View | 2025/10/29 | |
The PSP Obstacle Course | 2025/10/28 | |
PSP: Loss of Control | 2025/10/27 | |
ONE SPLIT SECOND – A STRANGE MOMENT | 2025/10/25 | |
PSP: Unsung Champions | 2025/10/24 | |
Quality of Life – I Challenge us to Look at more Positively | 2025/10/22 | |
Top Five PSP changes to have come from my Diagnosis? | 2025/10/22 | |
Lability: A New Word for Me – Good for General Knowledge, Horrible for PSP | 2025/10/20 | |
The North Star and the Fog | 2025/10/16 | |
PSP Report Card: Still Here, Still Laughing | 2025/10/12 | |
2 ½ falls, impulsiveness and a potential Whatsapp Group | 2025/10/11 | |
Faith Is a Massive Factor for Me | 2025/10/10 | |
The Eyes Have It | 2025/10/04 | |
No Saint Here – Staying Positive Is a Critical Battle, and Some Days I Fail | 2025/09/29 | |
Less Pain Than Expected – And Yoga Is Why | 2025/09/27 | |
Goals: Aim High, Adapt Well | 2025/09/26 | |
Why I Keep Pushing Myself | 2025/09/24 | |
Thank You, Movers and Shakers – Understanding Parkinsonism | 2025/09/21 | |
A Back Seat | 2025/09/19 | |
Stubborn as a Mule? | 2025/09/17 | |
12 Things I Learned as a New Electric Wheelchair User | 2025/09/16 | |
For Pity’s Sake | 2025/09/15 | |
This Week, PSP Lost | 2025/09/12 | |
My very own Harry Potter Style “That Which Must Not Be Named” | 2025/09/10 | |
Halved in Height but Feeling Taller Than Ever – Resilience | 2025/09/08 | |
Happiness is a … | 2025/09/04 | |
Renovation – The Hardest Project Yet, But the Most Important One | 2025/09/04 | |
Kindness, Wheelchairs, and Owning My Mistakes | 2025/09/02 | |
PSP (PD/xyz) in context | 2025/08/31 | |
The Messy Home and New Wheel Park | 2025/08/29 | |
Inspiring Me, Surprising Me: The Grit and Grace of PSP and PD Warriors | 2025/08/28 | |
My near purchase of a Scooter 🙂 A great but chaotic day | 2025/08/27 | |
Feeling Electric – A Wedding Reflection (last wheelchair story for now probably…) | 2025/08/26 | |
Day 1 with the Wheelchair – A totally new perspective (and happy one) | 2025/08/25 | |
Shopping for Wheels: Choosing the Right Mobility Aid 🙂 | 2025/08/24 | |
So incredibly happy and so incredibly sad, and it is ok. | 2025/08/22 | |
All Change… Mind the Gap… All Aboard | 2025/08/20 | |
A positive step in my journey (and its not about the weather) | 2025/08/13 | |
5K → Walker → Wheelchair in 190 Days | 2025/08/10 | |
🎉 Chess Instead of Football – Have I Lost It? 😜 | 2025/08/07 | |
Stop it – No Regrets, No Melodrama (Just a Walk) – Yalla!! | 2025/08/06 | |
What Positivity Means to Me | 2025/08/04 | |
A Chapter Ends: My Experience with the Pump, Gratitude, Apologies, and the Road Ahead | 2025/08/01 | |
The Calm Before the Storm or the Gradual Climb at the Start of the Rollercoaster? | 2025/07/26 | |
From a Prison to an Ark | 2025/07/24 | |
Always Look on the Bright Side: Pilates, the Cruise, and the Power of Hope | 2025/07/22 | |
When Is It Time to Make the Video? | 2025/07/20 | |
Not travelling: A tough choice with PSP, But Still the Right One | 2025/07/17 | |
“You doing ok?” – Three Possible Answers | 2025/07/15 | |
Readjustment to Change and a Plea to Not Advise Me to Swim | 2025/07/07 | |
Now it’s you and me PSP | 2025/07/01 | |
Retiring becomes official – tough but clearly the right move…we fight on | 2025/06/27 | |
An indulgance | 2025/06/20 | |
You’ll never walk alone | 2025/06/17 | |
Chocolate – yes I did…. 🍫🍫🍫🍫 | 2025/06/15 | |
Carlos Alcaraz – More Than Tennis: He Never Gives Up | 2025/06/09 | |
Patient and Caregiver – A Crucial Team | 2025/06/08 | |
Mentoring and Keeping My Brain Active | 2025/06/06 | |
Thank you!!! The day may come when I can’t say it myself | 2025/06/05 | |
Disabled… and Finding Meaning in the Journey | 2025/05/31 | |
Adapting to Change: Strength in the Face of PSP | 2025/05/29 | |
Adapting to Retirement: Embracing the Siesta | 2025/05/26 | |
Sad to Be Right: ‘Proof’ that Stopping Driving Was Right | 2025/05/21 | |
Why me? A new and purposeful beginning | 2025/05/23 | |
Japan – Why I Was Spellbound | 2025/05/18 | |
Japan – blog 2 | 2025/05/16 | |
No “Hail Mary” this time | 2025/05/14 | |
Japan with the Pump, PSP and Walker – Blog 1 | 2025/05/12 | |
Life Begins at Fifty – A Moment of Profound Clarity Just in Time | 2025/05/10 | |
The Waiting Game – I Would Make the Worst Hunter | 2025/05/08 | |
“Do It for Your Grandchildren”: My almost falling for a Miracle Cure | 2025/05/06 | |
Finding My Meaning: Family, Country, and Faith | 2025/04/25 | |
Viktor Frankl, Holocaust Memorial Day and Walker Decision (Video clip) | 2025/04/23 | |
I made it! The long/short walk home | 2025/04/23 | |
Dominoes and Chess | 2025/04/21 | |
Writing blogs is my way of talking to people – I see it now | 2025/04/11 | |
Big and Bold are Beautiful | 2025/04/09 | |
Hope and Optimism – Statistics are LOGICALLY not relevant for me | 2025/04/08 | |
Hope – the clear winner but not by a Knock Out | 2025/04/04 | |
Rehab revisit shock and a cab ride buddy to lift me up | 2025/04/02 | |
Learning to fall properly….not quite Jackie Chan but it saved me | 2025/04/01 | |
Night and Day – shuffle versus 5k | 2025/03/30 | |
Out of crisis and back to LIFE | 2025/03/29 | |
My internal struggle – guilt versus rest | 2025/03/28 | |
Wouldn’t it be good to know 100% if it is PSP? | 2025/03/27 | |
PSP Awareness – Does it matter? YES!!! | 2025/03/25 | |
Time and Times – Quality not just Quantity | 2025/03/24 | |
Makes blogging worthwhile | 2025/03/23 | |
New Week, New Energy, Reenergized Faith…. | 2025/03/22 | |
Dignity….my fear and my action plan…. | 2025/03/21 | |
From Giving to Taking: Accepting Help in My Fight | 2025/03/19 | |
Therapy: The Consultant Who Finally Took Advice | 2025/03/18 | |
It’s okay – I also don’t quite know what to say…. | 2025/03/16 | |
Am I scared? | 2025/03/15 | |
PSP Israel…An opportunity to make a difference | 2025/03/14 | |
Some comfort (and possibly hope) starting to flow…. | 2025/03/11 | |
24 hours – flirting with danger and yet such a normal day | 2025/03/10 | |
5 years in…. | 2025/03/09 | |
L’chaim – To Life, a strange alcohol experiment and a reboot | 2025/03/08 | |
PD/PSP- It is a team game, doubles pairing and an individual sport… | 2025/03/07 | |
IMPORTANT!! Just to clarify for my friends and family | 2025/03/06 | |
‘Appears to be PSP’ – Actually a positive thing and a call to action | 2025/03/06 | |
Blown away, a little embarrassed and grateful | 2025/03/04 | |
“Life goes on” – Finding Light in the Darkness: My Journey with a New Diagnosis | 2025/03/04 | |
Last post for a while – It is probably not actually PD…unfortunately | 2025/03/02 | |
Driving – Letting Go of the Wheel: Finding Hope Beyond My Love for Driving | 2025/03/03 | |
A personal story from Cure PSP – The Gervais Family | 2025/04/16 |
Chapter 2: What I’ve Learned About PSP
Science without the jargon.
Post Title | Publication Date | Link |
Key Resources for PSP: Guides, Caregiver Support, Practical Help & Online Communities | Nov 2025 | |
€35, Hours of Pivoting, and My Deep Dive into the Transition from Parkinson’s to PSP-P | 2025/08/15 | |
Biomarkers – A Game-Changer I Only Met This Weekend! | 2025/08/17 | |
Misdiagnosis – The Emotional Cost Biomarkers Could Spare | 2025/08/18 | |
Help, Is Anyone Listening? Why My PSP Delay Was Both a Blessing and a Curse | 2025/11/10 |
Chapter 3: The Intro and Early Years of PD / Early Warning Signs of PSP
From the initial diagnosis shock to running highs, med tweaks, and those nagging hints of something more.
Post Title | Publication Date | Link |
Year 1 of PD – Glass Half Full | 2021/08/23 | |
Year 2 – Remain clumsy, some new meds but so far so good | 2022/01/09 | |
Year 2 into 3…PD has not been the key thing 🙂 | 2022/06/01 | |
August 2022 Update – “keep up the good work”, a few bumps and a word on insurance (as boring as it is) | 2022/09/01 | |
Parkinson’s – all good but a scare – it really could have been a lot worse…but it isn’t thankfully (TG) | 2022/12/11 | |
March 2023 – PD…short update…choking, 40 becomes 20 and I really am British | 2023/03/24 | |
Update June ’23: staying positive is hard work and takes effort but is worth it | 2023/06/20 | |
RUNNING & RAISING FOR PARKINSON’S | 2023/08/30 | |
December 23 update – the impact of war and my blog from before the war I didn’t publish | 2023/12/17 | |
Back to running & learning to cope with acute stress | 2024/02/21 | |
Every day is Parkinson’s Day – Attitude is a big deal | 2024/04/09 | |
Life Expectancy With PD – Redoubling my efforts | 2024/05/02 | |
PD Silver Lining – yes there is | 2024/05/13 | |
Just half a tablet – feels great! | 2024/05/31 | |
5k at 3am indoors | 2024/07/29 | |
Fear – A New But Familiar Journey…time To Fight Back | 2024/09/17 | |
Chocolate – yes I did…. 🍫🍫🍫🍫 | 2024/11/26 | |
Am I imagining it? Seriously? | 2025/01/05 | |
Why can’t I finish this sentence? | 2025/01/12 | |
Parkinson’s: A Parasite, Not a Vulture | 2025/01/14 | |
Victory in the fight – it is not a % of my old goals | 2025/01/14 | |
Fight – Do I need a new URL? | 2025/01/15 | |
I built a Parkinson’s Board Game last night! | 2025/01/18 | |
Collateral damage of PD on relationships | 2025/01/20 | |
‘Why Worry’ – of course I do – the impact of stress on PD | 2025/01/22 | |
Hope for the best, plan for the worst – The tough stuff | 2025/01/03 | |
Parkinson’s – positives from my journey | 2025/01/08 | |
People, Not Patients! | 2025/01/10 | |
Welcome Back to Choking – The biggest killer?? | 2025/01/01 | |
Faith, Meaning and Parkinson’s | 2024/12/29 |
Chapter 4: The PD Deep Cut
Practical guides and resources.
Post Title | Publication Date | Link |
Sleep CBT…an open mind…seems to be working | 2022/01/25 | |
Med switch and my muscles…a learning for me | 2022/02/02 | |
ASSERTS2: Helping You Start the Journey | 2024/03/12 | |
Being a Close Friend to Someone with Parkinson’s | 2024/12/29 | |
You Know You Have a Sleep Problem When… | 2024/11/18 | |
“Be positive” The most annoying words but yet the key…my perspective | 2024/11/20 | |
Addictions and Obsessive behavior – my thoughts | 2024/11/22 | |
An evening without Parkinson’s | 2024/11/24 | |
The fight with PD – head on or guerrilla tactics | 2024/11/26 | |
To be open about having Parkinson’s… | 2024/11/29 | |
What actually is having a freezing/balance episode like?? | 2024/12/01 | |
Time – as someone with Young Onset Parkinson’s | 2024/12/03 | |
Choices are limited but yet endless and bewildering | 2024/12/05 | |
The huge financial burden – elephant in the room | 2024/12/08 | |
Chill… Take a Deep Breath… You’re Not Doing Too Badly | 2024/12/10 | |
Loss of Smell-like the Wi-Fi is broken on a sinking ship 🙂 | 2024/12/18 | |
To Michael J Fox – Thank you | 2024/12/20 | |
What causes Parkinson’s and does it matter? | 2024/12/27 | |
What actually is Parkinson’s Disease? | 2024/12/15 | |
Delivering the PD Diagnosis – 76% received no training | 2024/12/12 | |
YES to Hope… | 2024/12/22 | |
Parkinson’s could almost triple by 2050 – The Lancet | 2025/01/25 | |
PRO-PD – What is the best/worst food, supplements and food behaviors | 2025/02/08 | |
Diet choices – It can’t hurt…try it…it’s only $xxx | 2025/01/30 |
Chapter 5: The Pump and Time Leading Up to Diagnosis with PSP
The Produodopa/Vyalev escalation, tweaks, and the final pivot to the real story.
Post Title | Publication Date | Link |
Pumped literally and figuratively | 2024/12/25 | |
12 very scary hours and then good service resumed | 2024/11/16 | |
5k and Yoga by 4am – Life with the Pump | 2024/11/14 | |
Produodopa/Vyalev – a few days in…TRULY AMAZING (for me) | 2024/11/12 | |
The pump – very first impressions…(Produadopa/Vyalev) | 2024/11/10 | |
Pills to pump….a big but hopefully really positive step forward | 2024/11/08 | |
Pump update – the journey continues | 2024/12/03 | |
Pump – the next stage | 2024/12/08 | |
Pump – minor setback | 2024/12/10 | |
Pump – back on track | 2024/12/14 | |
Pump – doing great | 2024/12/17 | |
Pump – minor tweak | 2024/12/18 | |
Pump – another tweak | 2024/12/19 | |
Pump – all good | 2024/12/20 | |
Patient number 007 – yes I am serious…Pump update | 2024/12/22 | |
A Parasite, Not a Vulture | 2025/01/14 | |
My current verdict of the Pump – in awe but I totally get it is not for all …. | 2025/02/10 | |
Parkinson’s – it is certainly not boring | 2025/02/20 | |
A Moment to Say Thanks | 2025/02/22 | |
YEH – It’s official – My Garmin told me I am actually 2 years younger | 2025/02/25 | |
4-4-4 – Learning to Breathe like the Navy SEALs or like me 😀 | 2025/02/28 | |
Lighting can strike twice – the norm | 2025/02/03 | |
All from a pair of Airline Socks 🙂 | 2025/02/05 | |
Reality darker than horror, richer than fiction | 2025/02/01 | |
Faking it – are you actually serious? | 2025/02/18 | |
Finding Light in Dark Times: Coldplay’s ‘Fix You’ and Michael J. Fox’s Inspiring Performance | 2025/02/15 | |
Parkinson’s? …but you don’t have a tremor | 2025/02/12 |
