👉 LINK TO BOOKLET 

Below is an extract from “Navigating a Terminal Illness – A Patient’s view for Caregivers” with the introduction and reference to the individual blog posts

Introduction:

We’re in this together, terminal illness impacts both of us in profound and countless ways. I experience it as the patient; you face it as the caregiver. Though we see different sides of the same coin, our journey is shared. Just as I learn a lot from caregivers, I hope my thoughts may help you understand how your loved one might be experiencing the other side of this journey.

PSP, Progressive Supranuclear Palsy, is a terminal neurological condition, often described as an extreme form of Parkinson’s Disease, with a life expectancy of 6, 10 years. I am now in Year 5. Importantly, there is currently no treatment for PSP. This booklet contains a selection of articles written in October and November 2025, originally published on my blog (www.benlazpsp.com). Each article focuses on a different aspect of how I am living and coping with PSP, my terminal illness.

Although I have learned a fair bit about the world of medicine over the past five years, I have no medical training or qualifications. This booklet takes a non-medical approach and is not surrounded by scientific facts. Rather, it is simply the view and voice of one PSP patient, a voice that, I believe, may be of some use. I believe this story is relevant to many conditions and situations beyond the world of PSP.

Caregivers have a unique responsibility. They are often thrust into their role without ever asking for it, and it places considerable demands on them. I imagine most patients are beyond grateful for the support they receive from their caregivers, even if they are unable to say so themselves.

Just as patients should be understanding and empathetic toward their caregivers, I believe caregivers may find it helpful to hear a personal view of how the patient might see things.

The structure of this booklet is designed to convey an authentic perspective on living with Progressive Supranuclear Palsy (PSP), highlighting both the ups and the downs. It also touches on the guiding principles that sustain me: faith, family, purpose, positivity, and dignity. Through honest reflections and practical advice, I hope to offer a bit of support and insight, and perhaps a sense of connection, even as choices narrow.

Lastly, this is not designed as a book about faith or religion, but it would be remiss of me not to mention the importance faith plays in my journey. I am an observant orthodox Jew living in Israel. I grew up in the UK in a traditional but non-religious household and chose to become observant at age 11. To that end, I’ve included one article at the end on my view of faith as a fundamental support in my journey.

I hope you find these articles useful.
With my warmest wishes for your resilience and perseverance,
Ben Lazarus, Israel,  November 2025

Please note these are individual blogs, so you may have to cope with a little repetition! Enjoy.

Dedication
I want to dedicate this booklet to my family, and especially to my amazing wife Gayle, my soulmate through this journey neither of us asked for, and to my three wonderful and precious kids, each an everyday wonder and miracle my life has been blessed with.

Usage and Image Notice

You are welcome to share, quote, or use the contents of this booklet freely, provided it is done respectfully and with appropriate acknowledgment. Please do not alter the meaning or intent of the material. It is not intended to be used for commercial gain. The images in this booklet were designed by me and generated by AI at my request; you may use them in connection with this work, but please do not present them as your own original artwork.

Reference Table

(LINK TO BOOKLET )