Intro – My Journey with PSP

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 an electric wheelchair to a manual one, and then to full-time live-in care. I have crossed milestones – some joyful (a daughter’s wedding, books published), some brutally honest (losing my voice clarity, confronting dependency, writing what I called the hardest post of my life). I have published four books – two on PSP and two collections of Torah reflection – with a fifth underway. The blog now runs in English, Hebrew, Spanish, and French.

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:

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.

Chapter 2: What I’ve Learned About PSP

Science without the jargon.

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.

Chapter 4: The PD Deep Cut

Practical guides and resources.

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.

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