Intro – My Journey with PSP

Editor’s note: Rows highlighted in pale yellow are new entries added in this update (April 2026). The introduction has also been lightly updated to reflect where things stand now.

 

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 humour 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.

The story has grown darker – and also, in unexpected ways, richer. PSP – Progressive Supranuclear Palsy – is a rare neurological disease that affects balance, movement, speech, swallowing, and eye control. It is 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. For a clear overview of symptoms and stages, see this post: PSP: Understanding Symptoms and Stages.

Since I last updated this page, a great deal has happened. I moved from a manual wheelchair to full-time live-in care. My vision has deteriorated significantly, adding a new and cruel dimension to PSP’s grip. I have crossed milestones – some joyful (a daughter’s wedding, four books published, a first poem written, a full blog archive compiled), some brutally honest (losing voice clarity, confronting dependency, raging at trousers).

I am 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 have found true friendship and deep respect for the warriors – patients, caregivers, and medical professionals striving for better. And none of this would be possible without my wife and family, who do the real work while I write.

 

Blog Guide

I’ve organised 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 4: The PD Deep Cut

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 www.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

Fourteen Months In: Still Me

Apr 2026

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Botox and Blinded

Apr 2026

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My Legs Have Forgotten What They’re For

Apr 2026

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The Candle, the Disguise, and a One Line Message

Apr 2026

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Telling Your Kids You Have PSP and All That It Means

Apr 2026

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PSP: Progressively Stealing My Vision

Apr 2026

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Explosive Rage Over… Trousers

Apr 2026

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Do I Compare Myself? And To What?

Apr 2026

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What on Earth Is Winning and Losing?

Apr 2026

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It Would Be So Easy

Apr 2026

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Silence, Listening and PSP

Apr 2026

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“Bum Shuffling” to Happiness

Apr 2026

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Of course it is not normal

Apr 2026

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An inner calm and sense of peace

Apr 2026

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The Suffering Olympics — and Why Nobody Wins

Apr 2026

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WOW – What a privileged position I am in

Apr 2026

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Visiting the Sick – This Patient’s Input

Apr 2026

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I Don’t Want to Write This. That’s Why I Have To.

Apr 2026

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Did you know? (Full Blog Repository included as a PDF)

Apr 2026

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Struggling to Stay Me

Apr 2026

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Anticipatory Grief

Apr 2026

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My PSP Battle – My First Poem (and no AI in its writing)

Apr 2026

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Lessons, Tips, Faith and the Absurd – A Quote Card

Apr 2026

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Candy Crush and PSP

Apr 2026

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Toxic Positivity

Apr 2026

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Standing at the Threshold

Apr 2026

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An “A” vs Goals: A Little Pat on the Back

Mar 2026

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Mixed Messages: The Conflict Between Acceptance, Fighting, and Denial

Mar 2026

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Positivity Takes Sweat and Doesn’t Come Easily — Yet It Is the Way

Mar 2026

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West Wing, F1 and a Picture Board

Mar 2026

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Crowds, Lights, Noise, and People – A Necessary Step Back. Please Don’t Take Offence

Mar 2026

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Wow! The Relentless Workload of Being Cared For

Mar 2026

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A Taste of What May Come

Mar 2026

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My New Project: Book Number Four

Mar 2026

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Help, The Beatles, and Me. A Different Meaning Now

Mar 2026

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A Carer at 50 – It Is Time to Embrace Yet Another New Reality

Mar 2026

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The Mental Battle – Let’s Be Honest with Ourselves

Mar 2026

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From the Sublime to the Ridiculous, Back to a Happy Balance: A Week of Weddings, Joy, and a Suspected Mini‑Stroke

Mar 2026

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The Wedding That Nothing Could Stop

Mar 2026

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Just a Regular Dad – Tears and All

Mar 2026

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Diapers, Botox, and Red Lines: By Far the Hardest Post to Write So Far

Mar 2026

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“Sorry Ben – I Can’t Make Out What You Are Saying.”

Mar 2026

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War – No Real Blog on PSP Today

Mar 2026

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Dealing with Anger

Feb 2026

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The Vanilla Index

Feb 2026

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Self‑Motivation and Creativity

Feb 2026

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Two Wrongs and One Right

Feb 2026

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PSP at 50 – A Complete Anomaly!

Feb 2026

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The Sleep Difference Is Simply Enormous

Feb 2026

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An App That Has Changed My Writing Life

Feb 2026

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Guilt: The Energy Thief We Can’t Afford (Especially in PSP)

Feb 2026

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Old Dogs Can Learn New Tricks: Timing and Adaptability in Making Choices (C-TAM)

Feb 2026

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24 Hours with PSP: The Zoom Screen Is Not Frozen, It Is Me

Feb 2026

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Jesse Jackson – May He Rest in Peace

Feb 2026

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Same Space, Same Time – 5 km in Jan 2025 and 1,000 Wheelchair Pushes Today

Feb 2026

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A Special Haircut – Much Needed Today

Feb 2026

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10,000 Steps to 2,000 Pushes: New Watch, New Challenge

Feb 2026

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PSP Patients: We Can Hear You…

Feb 2026

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FOTB Update 2 – The Father Is Winning Against the Patient

Feb 2026

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The Carer Dating Game: Being Left Without a Date for Valentine’s

Feb 2026

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Life in a Manual Wheelchair – It Will Have to Be Coffee, Not Tea Today

Feb 2026

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OK – Somehow It Is!

Feb 2026

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Anticipatory Grief – It Is Real and I Feel Its Effects

Feb 2026

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PSP Feels Like Hyper‑Speed Aging

Feb 2026

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(In)dependence Soul Searching

Feb 2026

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“Where Did This Come From?” – The Funniest 20-Minute Ice Cream Story

Feb 2026

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FOTB – Father of the Bride

Feb 2026

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Controlling the “Uncontrollable”: Acute Anxiety, Stress, Panic… and the Role of Breathing, Music, and Sleep

Feb 2026

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Positive Attitude Doesn’t Mean Denial, Ignoring the Pain, or Comparing Myself to Others

Feb 2026

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Life with Two Palsy Conditions – Be Careful with the Mouthwash

Jan 2026

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A Big, Big Win After a Day of Feeling I’d Lost (and Ambulance and ER)

Jan 2026

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Huge Internal Debate About Blogging

Jan 2026

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PSP Seems to Be Progressing Exponentially…

Jan 2026

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What a Difference a Day Makes!

Jan 2026

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Very Proud, Very Scared

Jan 2026

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Wow, This Is Hard!!

Jan 2026

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Wheelchair – You Can Get Used to Anything

Jan 2026

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Stockpiling Useless Equipment

Jan 2026

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We All Cope Differently, and That Is OK

Jan 2026

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PSP Timeline in a Nutshell: Saying Goodbye to Electric Wheelchairs?

Jan 2026

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Admitting Anxiety, A Healthy Step Forward

Jan 2026

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Waiting, Restlessness, Boredom – and a Third Book (Coming Soon!)

Jan 2026

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High Hopes, Hard Truths: 24 Hours with PSP and the Reality of TPN-101

Jan 2026

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Gradual and Sudden

Jan 2026

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Hermit Permit – Finding My Balance

Jan 2026

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One Frozen Day in 2026

Jan 2026

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Navigating a Terminal Illness – A Patient’s View for Caregivers

Nov 2025

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Beyond PSP: Lessons from an Unchosen Journey

Nov 2025

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Progressive Supranuclear Palsy (PSP): Understanding Symptoms and Stages

Nov 2025

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End-of-Life Planning: The Essential and the Absurd

Nov 2025

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Perspective – Genuinely Another Good Week

Nov 2025

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The Eerie Silence of PSP: Navigating a Journey Without Treatment

Nov 2025

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Audio Enabled – Why I Acted Immediately

Nov 2025

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“Your Illustrations Are Great! Is That Your Profession?” – And Other Surprises From My Blogging Life

Nov 2025

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Squeezing the Last Drop from End of the Toothpaste

Nov 2025

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Greatest Inventions – The Shower Chair

Nov 2025

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Reflux – Welcome to the Party

Nov 2025

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Fighting my demons – And Winning (Just)

Nov 2025

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Finding Joy Amid PSP: A Bowl of Meat Sauce and a Guitar

Nov 2025

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Felled and frozen by a dog bone – we move on…to downstairs!

Nov 2025

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5 Goals/Shifting tactics

Nov 2025

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Enough with PSP… Other People Have Lives Too

2025/11/11

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Truth or Not: Am I Being an Honest PSP Blogger?

2025/11/10

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Time to decide what matters…

2025/11/08

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“No Way”: The Tiny Spoon Thickener Catastrophe 🙂

2025/11/07

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Hope

2025/11/06

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On Behalf of “They”

2025/11/05

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Adaptation

2025/11/04

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Weirdest 24 Hours Ever: The Utter Absurdity of Living with PSP (Feeding Tube, Terrified, Toy Cars, Food Success, Toenail)

2025/11/04

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Slow Down!!!

2025/11/03

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The Sad, Beautiful, Yet Quiet and Forgotten Voice of PSP

2025/11/02

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24 Hours On: We Have a Clear Plan, Need a New School Bag, and Definitely NO Air Bag

2025/10/31

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Strike 2: A Terrifying Fall, My PSP Wake-Up, and Why I’ll Keep Writing

2025/10/30

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Apathy: “He Is Not My Husband Anymore” – A Patient’s View

2025/10/29

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The PSP Obstacle Course

2025/10/28

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PSP: Loss of Control

2025/10/27

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ONE SPLIT SECOND – A STRANGE MOMENT

2025/10/25

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PSP: Unsung Champions

2025/10/24

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Quality of Life – I Challenge us to Look at it More Positively

2025/10/22

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Top Five PSP Changes to Have Come from my Diagnosis?

2025/10/22

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Lability: A New Word for Me – Good for General Knowledge, Horrible for PSP

2025/10/20

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The North Star and the Fog

2025/10/16

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PSP Report Card: Still Here, Still Laughing

2025/10/12

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2 ½ falls, impulsiveness and a potential WhatsApp Group

2025/10/11

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Faith Is a Massive Factor for Me

2025/10/10

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The Eyes Have It

2025/10/04

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No Saint Here – Staying Positive Is a Critical Battle, and Some Days I Fail

2025/09/29

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Less Pain Than Expected – And Yoga Is Why

2025/09/27

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Goals: Aim High, Adapt Well

2025/09/26

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Why I Keep Pushing Myself

2025/09/24

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Thank You, Movers and Shakers – Understanding Parkinsonism

2025/09/21

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A Back Seat

2025/09/19

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Stubborn as a Mule?

2025/09/17

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12 Things I Learned as a New Electric Wheelchair User

2025/09/16

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For Pity’s Sake

2025/09/15

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This Week, PSP Lost

2025/09/12

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My very own Harry Potter Style “That Which Must Not Be Named”

2025/09/10

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Halved in Height but Feeling Taller Than Ever – Resilience

2025/09/08

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Happiness is a…

2025/09/04

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Renovation – The Hardest Project Yet, But the Most Important One

2025/09/04

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Kindness, Wheelchairs, and Owning My Mistakes

2025/09/02

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PSP (PD/xyz) in context

2025/08/31

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The Messy Home and New Wheel Park

2025/08/29

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Inspiring Me, Surprising Me: The Grit and Grace of PSP and PD Warriors

2025/08/28

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My near purchase of a Scooter 🙂 A great but chaotic day

2025/08/27

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Feeling Electric – A Wedding Reflection

2025/08/26

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Day 1 with the Wheelchair – A totally new perspective (and happy one)

2025/08/25

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Shopping for Wheels: Choosing the Right Mobility Aid 🙂

2025/08/24

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So incredibly happy and so incredibly sad, and it is ok.

2025/08/22

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All Change… Mind the Gap… All Aboard

2025/08/20

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A positive step in my journey (and its not about the weather)

2025/08/13

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5K → Walker → Wheelchair in 190 Days

2025/08/10

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🎉 Chess Instead of Football – Have I Lost It? 😜

2025/08/07

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Stop it – No Regrets, No Melodrama (Just a Walk) – Yalla!!

2025/08/06

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What Positivity Means to Me

2025/08/04

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A Chapter Ends: My Experience with the Pump, Gratitude, Apologies, and the Road Ahead

2025/08/01

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The Calm Before the Storm or the Gradual Climb at the Start of the Rollercoaster?

2025/07/26

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From a Prison to an Ark

2025/07/24

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Always Look on the Bright Side: Pilates, the Cruise, and the Power of Hope

2025/07/22

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When Is It Time to Make the Video?

2025/07/20

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Not travelling: A tough choice with PSP, But Still the Right One

2025/07/17

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“You doing ok?” – Three Possible Answers

2025/07/15

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Readjustment to Change and a Plea to Not Advise Me to Swim

2025/07/07

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Now it’s you and me PSP

2025/07/01

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Retiring becomes official – tough but clearly the right move…we fight on

2025/06/27

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An indulgence

2025/06/20

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You’ll never walk alone

2025/06/17

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Chocolate – yes I did…. 🍫🍫🍫🍫

2025/06/15

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Carlos Alcaraz – More Than Tennis: He Never Gives Up

2025/06/09

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Patient and Caregiver – A Crucial Team

2025/06/08

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Mentoring and Keeping My Brain Active

2025/06/06

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Thank you!!! The day may come when I can’t say it myself

2025/06/05

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Disabled… and Finding Meaning in the Journey

2025/05/31

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Adapting to Change: Strength in the Face of PSP

2025/05/29

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Adapting to Retirement: Embracing the Siesta

2025/05/26

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Sad to Be Right: ‘Proof’ that Stopping Driving Was Right

2025/05/21

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Why me? A new and purposeful beginning

2025/05/23

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Japan – Why I Was Spellbound

2025/05/18

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Japan – blog 2

2025/05/16

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No “Hail Mary” this time

2025/05/14

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Japan with the Pump, PSP and Walker – Blog 1

2025/05/12

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Life Begins at Fifty – A Moment of Profound Clarity Just in Time

2025/05/10

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The Waiting Game – I Would Make the Worst Hunter

2025/05/08

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“Do It for Your Grandchildren”: My almost falling for a Miracle Cure

2025/05/06

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Finding My Meaning: Family, Country, and Faith

2025/04/25

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Viktor Frankl, Holocaust Memorial Day and Walker Decision (Video clip)

2025/04/23

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I made it! The long/short walk home

2025/04/23

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Dominoes and Chess

2025/04/21

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Writing blogs is my way of talking to people – I see it now

2025/04/11

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Big and Bold are Beautiful

2025/04/09

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Hope and Optimism – Statistics are LOGICALLY not relevant for me

2025/04/08

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Hope – the clear winner but not by a Knock Out

2025/04/04

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Rehab revisit shock and a cab ride buddy to lift me up

2025/04/02

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Learning to fall properly….not quite Jackie Chan but it saved me

2025/04/01

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Night and Day – shuffle versus 5k

2025/03/30

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Out of crisis and back to LIFE

2025/03/29

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My internal struggle – guilt versus rest

2025/03/28

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Wouldn’t it be good to know 100% if it is PSP?

2025/03/27

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PSP Awareness – Does it matter? YES!!!

2025/03/25

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Time and Times – Quality not just Quantity

2025/03/24

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Makes blogging worthwhile

2025/03/23

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New Week, New Energy, Reenergized Faith….

2025/03/22

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Dignity….my fear and my action plan….

2025/03/21

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From Giving to Taking: Accepting Help in My Fight

2025/03/19

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Therapy: The Consultant Who Finally Took Advice

2025/03/18

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It’s okay – I also don’t quite know what to say….

2025/03/16

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Am I scared?

2025/03/15

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PSP Israel…An opportunity to make a difference

2025/03/14

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Some comfort (and possibly hope) starting to flow….

2025/03/11

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24 hours – flirting with danger and yet such a normal day

2025/03/10

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5 years in….

2025/03/09

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L’chaim – To Life, a strange alcohol experiment and a reboot

2025/03/08

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PD/PSP – It is a team game, doubles pairing and an individual sport…

2025/03/07

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IMPORTANT!! Just to clarify for my friends and family

2025/03/06

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‘Appears to be PSP’ – Actually a positive thing and a call to action

2025/03/06

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Blown away, a little embarrassed and grateful

2025/03/04

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“Life goes on” – Finding Light in the Darkness: My Journey with a New Diagnosis

2025/03/04

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Last post for a while – It is probably not actually PD…unfortunately

2025/03/02

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Driving – Letting Go of the Wheel: Finding Hope Beyond My Love for Driving

2025/03/03

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A personal story from Cure PSP – The Gervais Family

2025/04/16

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Chapter 2: What I’ve Learned About PSP

Science without the jargon.

Post Title

Publication Date

Link

Blown Away: The Power of Levodopa in Transforming PD Outcomes vs PSP

Apr 2026

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Key Resources for PSP: Guides, Caregiver Support, Practical Help & Online Communities

Nov 2025

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€35, Hours of Pivoting, and My Deep Dive into the Transition from Parkinson’s to PSP-P

2025/08/15

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Biomarkers – A Game-Changer I Only Met This Weekend!

2025/08/17

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Misdiagnosis – The Emotional Cost Biomarkers Could Spare

2025/08/18

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Help, Is Anyone Listening? Why My PSP Delay Was Both a Blessing and a Curse

2025/11/10

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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

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Year 2 – Remain clumsy, some new meds but so far so good

2022/01/09

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Year 2 into 3…PD has not been the key thing 🙂

2022/06/01

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August 2022 Update – “keep up the good work”, a few bumps and a word on insurance

2022/09/01

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Parkinson’s – all good but a scare

2022/12/11

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March 2023 – PD…short update…choking, 40 becomes 20 and I really am British

2023/03/24

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Update June ’23: staying positive is hard work and takes effort but is worth it

2023/06/20

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RUNNING & RAISING FOR PARKINSON’S

2023/08/30

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December 23 update – the impact of war and my blog from before the war I didn’t publish

2023/12/17

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Back to running & learning to cope with acute stress

2024/02/21

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Every day is Parkinson’s Day – Attitude is a big deal

2024/04/09

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Life Expectancy With PD – Redoubling my efforts

2024/05/02

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PD Silver Lining – yes there is

2024/05/13

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Just half a tablet – feels great!

2024/05/31

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5k at 3am indoors

2024/07/29

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Fear – A New But Familiar Journey…time To Fight Back

2024/09/17

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Chocolate – yes I did…. 🍫🍫🍫🍫

2024/11/26

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Am I imagining it? Seriously?

2025/01/05

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Why can’t I finish this sentence?

2025/01/12

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Parkinson’s: A Parasite, Not a Vulture

2025/01/14

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Victory in the fight – it is not a % of my old goals

2025/01/14

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Fight – Do I need a new URL?

2025/01/15

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I built a Parkinson’s Board Game last night!

2025/01/18

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Collateral damage of PD on relationships

2025/01/20

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‘Why Worry’ – of course I do – the impact of stress on PD

2025/01/22

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Hope for the best, plan for the worst – The tough stuff

2025/01/03

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Parkinson’s – positives from my journey

2025/01/08

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People, Not Patients!

2025/01/10

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Welcome Back to Choking – The biggest killer??

2025/01/01

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Faith, Meaning and Parkinson’s

2024/12/29

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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

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Med switch and my muscles…a learning for me

2022/02/02

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ASSERTS2: Helping You Start the Journey

2024/03/12

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Being a Close Friend to Someone with Parkinson’s

2024/12/29

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You Know You Have a Sleep Problem When…

2024/11/18

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“Be positive” The most annoying words but yet the key…my perspective

2024/11/20

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Addictions and Obsessive behavior – my thoughts

2024/11/22

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An evening without Parkinson’s

2024/11/24

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The fight with PD – head on or guerrilla tactics

2024/11/26

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To be open about having Parkinson’s…

2024/11/29

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What actually is having a freezing/balance episode like??

2024/12/01

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Time – as someone with Young Onset Parkinson’s

2024/12/03

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Choices are limited but yet endless and bewildering

2024/12/05

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The huge financial burden – elephant in the room

2024/12/08

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Chill… Take a Deep Breath… You’re Not Doing Too Badly

2024/12/10

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Loss of Smell – like the Wi-Fi is broken on a sinking ship 🙂

2024/12/18

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To Michael J Fox – Thank you

2024/12/20

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What causes Parkinson’s and does it matter?

2024/12/27

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What actually is Parkinson’s Disease?

2024/12/15

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Delivering the PD Diagnosis – 76% received no training

2024/12/12

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YES to Hope…

2024/12/22

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Parkinson’s could almost triple by 2050 – The Lancet

2025/01/25

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PRO-PD – What is the best/worst food, supplements and food behaviors

2025/02/08

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Diet choices – It can’t hurt…try it…it’s only $xxx

2025/01/30

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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

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12 very scary hours and then good service resumed

2024/11/16

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5k and Yoga by 4am – Life with the Pump

2024/11/14

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Produodopa/Vyalev – a few days in…TRULY AMAZING (for me)

2024/11/12

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The pump – very first impressions…(Produadopa/Vyalev)

2024/11/10

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Pills to pump….a big but hopefully really positive step forward

2024/11/08

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Pump update – the journey continues

2024/12/03

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Pump – the next stage

2024/12/08

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Pump – minor setback

2024/12/10

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Pump – back on track

2024/12/14

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Pump – doing great

2024/12/17

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Pump – minor tweak

2024/12/18

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Pump – another tweak

2024/12/19

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Pump – all good

2024/12/20

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Patient number 007 – yes I am serious…Pump update

2024/12/22

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A Parasite, Not a Vulture

2025/01/14

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My current verdict of the Pump – in awe but I totally get it is not for all….

2025/02/10

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Parkinson’s – it is certainly not boring

2025/02/20

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A Moment to Say Thanks

2025/02/22

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YEH – It’s official – My Garmin told me I am actually 2 years younger

2025/02/25

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4-4-4 – Learning to Breathe like the Navy SEALs or like me 😀

2025/02/28

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Lighting can strike twice – the norm

2025/02/03

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All from a pair of Airline Socks 🙂

2025/02/05

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Page last updated: April 2026. For the full blog, including Hebrew, Spanish, and French posts, visit benlazpsp.com.