Category: English Blog Posts

SCAM! PSP Is Cruel Enough Without People Profiting From False Hope

A warning to PSP and Parkinson’s families about alleged miracle-treatment messages that exploit desperation through dramatic testimonials unsupported by credible clinical evidence.

Live-In Carers: The Horror Stories I Hear

A personal reflection on the abuse some live-in carers endure, the demands placed upon them and the dignity, rest and respect they deserve.

The Toughest Project of Our Lives: 18 Months of Battling PSP Through Stop. Start. Continue. Change.

“Once a consultant, always a consultant” – I know that’s what some of you will be thinking…. Last night I wrote that, eighteen months after my PSP diagnosis, my wife and I are in a better position than either of us expected to be at this stage. I’ve thought a lot about that sentence since writing […]

18 Months After Diagnosis: Better Than We Feared

It is not a particularly happy anniversary, but this week marks 18 months since I was diagnosed with PSP, and just under six and a half years since my first symptoms were identified by the hospital, initially thought to be Parkinson’s. My wife and I had an interesting conversation today. As they say in my […]

A Friend in Need Is a Friend Indeed

“A friend in need is a friend indeed.” My brother and I used to say that to each other when we were children. It was our catchphrase. I remember it so fondly to this day, and I’m sure my brother does too. I have no idea where it came from. No one else knew what […]

Please G-d – I Just Want to Be Me of Four Hours Ago

We’ve all had nightmares. Thankfully, it seems mine was just another nightmare. It was far more vivid than that, but I won’t go into too many details. In the dream, I was about five percent of myself in memory, cognition, coherence, and almost every other mental faculty. It was a nightmare, not physically, but intellectually. […]

“We save the best and worst for those we love the most”

I should say “I” I don’t know where this expression comes from, and for once I am not going to research it, because that would just be a diversion. I also know it is not an excuse that can be defended in any meaningful way by me. In fact, it is horrible. However, it is […]

Communication Boards (and a Comprehensive Template Included)

A subject I did not want to discuss, and had pushed off for a while, came up this morning. A neighbour, who is a professional in the field, walked us through the use of communication boards for when, or if, I reach the point where I can no longer communicate effectively myself. Of course I […]

Apparently, I’m Like Simon Cowell – Breaking the Spiral

An amusing comparison made me laugh this morning. I needed it far more than my friend could possibly have known. “You’re like Simon Cowell.” Those were the words of a friend who visited me yesterday and saw my tinted glasses. There are many things I have been called in my life. Simon Cowell has not […]

Empathy and the Impossible Balancing Act

It is hard and sometimes I paint the picture that things are simple – it is so far from the truth. People often describe empathy as “putting yourself in someone else’s shoes”. It sounds sensible enough and is usually presented as something deeper than sympathy, which is simply feeling concern for another person. I think […]

The Most Selfish, Controversial and Probably Unwanted Thing I Have Ever Said

I may come to regret writing this as it may cause hurt to some people. People I love may fundamentally disagree with it. Some may even be offended by it. And I admit from the outset that what I am about to say is deeply selfish. Before anything else, let me say this clearly: I […]

I’ve Still Got It

My family may not appreciate this post, but after this Shabbat (the Jewish Sabbath, from Friday sunset until Saturday night), I think I’ve earned the right to write it. For context, Shabbat in our house means no phones, no computers, no cars and, importantly, no blogs. We spend a lot of time together. As well […]

The Battle Over the Bath That Was So Much More Than a Bath

Last night I wanted a bath. That may sound entirely unremarkable, but for me it became a small battle that, on reflection the following morning and after an espresso, feels like a microcosm of the PSP story. Or perhaps three different PSP stories. Had I written it last night, I would probably have written about […]

PSP, me, impatience and an iPhone screen protector

Yesterday I was reminded that PSP affects much more than the things most people can see, and all it took was an iPhone screen protector. After this morning’s post, I’ve decided I need something to cheer me up. Perhaps it will cheer you up a little too. I’ll tell you something else that happened yesterday. […]

I Was Embarrassed, I Hid

I was having a good day. I’d had a good workout at physio and, despite needing a decent rest afterwards, I was doing well. I was certainly cognisant enough to win one out of two games of Rummikub against my mum. But PSP made itself present. I stiffened up badly. The pain in my leg […]

Maybe I Am Getting the Balance Right

Anyone who knows me knows that I am not particularly prone to giving myself compliments. But my very surprising, and to be honest slightly unsettling, takeaway from a lecture I heard this morning has led me somewhere rather different. This morning I listened to a lecture by Dr Howard Schubiner on chronic pain management. It […]

I Have PSP, and Today I’m Gutted About Trousers (Pants)

I have PSP, a life-threatening neurological disease, and today I am absolutely gutted about clothes. So much so that the anxiety caused the muscles in my face and arms to go rigid, meaning I couldn’t move my mouth and, in practical terms, I couldn’t move my arms. My carer, in combination with the massage gun, […]

My PSP Map – No, I Wouldn’t Want to Know

In trying to process my anxiety about what is to come – what the future looks like, what comes next anyway – I had a discussion with my sister. We imagined a world in which I could get a completely clear answer about my future with PSP. Dates. Timelines. Symptoms. Exactly when things would change […]

Doubt? Not really. When PSP is diagnosed, it is nearly always right

Oddly enough the subject of Doubt has come up twice in the last 24 hours. A person with another serious neurological illness was feeling, perhaps oddly, a little calmer now that she had a diagnosis, and someone asked me whether it makes a difference to the average “Joe” that PSP and like diseases are not […]

Mr Opposite: When a Heavy Weight Is Easier to Lift Than a Light One

Heavier weights in the gym are easier for me than light ones. It sounds completely backwards, but it is something that has been happening consistently in my physiotherapy sessions. Whether I am bench pressing, pulling on a pulley machine or moving weights out to the side, my movements often become steadier and more controlled as […]

Hope for PSP, Even If It May Come Too Late for Me

There is a lot of excitement in the PSP community at the moment about new research, and for once I think some of it is justified. I recently read an article in Being Patient about the latest PSP clinical trials and the possibility that we may finally be moving towards treatments that do more than […]

“🥲 He is my giant kind hero-daddy and I wish I could help him ❤️”

Trust me, you are. And you helped me as well. I read those words in a message this morning and they stopped me completely in my tracks. They brought tears to my eyes. They are still there. Not tears of sadness, but tears of gratitude, perspective and love. And thanks. The kindness of a stranger […]

Dear Loved One, They May Not Know Either

I see the same questions again and again in PSP support groups. Carers trying desperately to understand: Why does my husband or wife want to be alone for long periods? Why do they find it so difficult to communicate? Why aren’t they looking at their texts or emails or answering calls? Why are they angry? […]

A World of Countermeasures

I increasingly think of life with PSP as a world of countermeasures. There is no cure and currently no treatment that stops or reverses PSP. Yet there are an extraordinary number of things that can reduce its impact, preserve something valuable or find another route around a problem. I think of them in four broad […]

Boring is Just What I Want

Boring is boring. Surely there is nothing to write about. Why would I write about nothing? But a night and a day of quiet is actually a headline worth mentioning. Quiet for me, for my wife, for my daughter and for my carer. I truly have very little to say from the weekend, and I […]

Hope, Spontaneity and Anxiety Coexist. Pity Does Not.

Friday afternoon gives me a chance to pause, reflect on the week and look back over the posts I have published. Individually, they cover very different subjects. Read together, certain themes emerge. This week, they are hope, spontaneity and anxiety. All three coexist in my life. Pity does not. Ten years ago, if I had […]

REAL Hope in the Form of an Anonymous Message

I received an anonymous piece of feedback through the blog today that gave me something I badly needed. The writer is the daughter of a man who had PSP. She said: “Please be reassured yourself that he suffered no loss of cognitive function right to the end, even though he was reduced to one-word answers.” […]

Stubbornness, Goals and Three “Non-Falls”

I am definitely stubborn. I don’t think I am stubborn in the worst possible way. I do listen to people. I take advice on board. I change things when I need to. But I really don’t like moving away from a goal once I have set it. I had an interesting discussion today with a […]

Seriously, How Will I Travel When I’m 101?

Yesterday, I received a very pleasant surprise from EL AL, the airline I have flown with more than any other. They gave me Gold membership for life. I was genuinely touched. Then I discovered that my lifetime membership expires on 17 August 2076. I will be 101 years old. This presents a serious problem. What […]

Curiosity

Over the last few days, as part of my goal to lead prayers on the Jewish New Year, I have made a big effort to understand the prayers I will be leading as deeply as I can. After a day spent wrestling with graphic design and several other things I generally hate doing, I was […]

Right now – I’m in a Good Place

One of the dangers of writing positively is that you inevitably set yourself up for a fall. I know all the clichés. Feelings change. Circumstances change. Good days become bad days and bad days become good days. If there is one thing that living with PSP has taught me, it is that certainty is usually […]

Fear, Reality and PSP: Answering Two Questions as Honestly as I Can

I’ve recently implemented some feedback software on the website because although this started as a personal blog designed for me to express my feelings and communicate them to my loved ones without having to speak to each person individually, it has gradually become something bigger that seems to help other patients, carers, friends and family […]

The (Serious) Toothpaste-Cap Index

My Invention, Backed by Research I Did This Morning Before anyone says it, this is not another article about how to squeeze toothpaste properly. This article is about the cap. More specifically, it is about the tiny screw cap on my specialist anti-infection toothpaste. Until recently, I would not have described opening toothpaste as an […]

Living Vicariously and Family First

My family went to Cyprus today. I stayed at home and somehow had a fantastic time. I have spent almost the entire day at home. Apart from a trip to the physiotherapist and a walk, or perhaps more accurately a wheel, with the dog and mu full time carer, I haven’t really gone anywhere. Yet […]

A Spontaneous Flight to Cyprus…

On Shabbat, we were talking about family. My wife’s sister, her husband and their daughters were in Cyprus on holiday from the UK. Just one hour away by plane from here. I said why not go? They thought I was mad. It didn’t matter to me that I couldn’t go – I wanted my family […]

The Ben I Was 10 Years Ago Would Have Pitied Me. This Ben Doesn’t.

If the Ben of ten years ago had passed me in the street today, I think he might have pitied me. In fact, I’m pretty sure of it. He would have seen a 51-year-old man in a wheelchair, probably being pushed by his carer. If he had known a little more, he would have known […]

Progressive Means Sinister: It Creeps Up on You

One of the things I find most unsettling about Progressive Supranuclear Palsy is that the word progressive sounds almost harmless. Clinical. Predictable. As though symptoms advance in a neat, orderly fashion that you can observe and prepare for. The reality feels very different and this is a large factor in the Anxiety I feel. Progressive […]

44 Pills a Day. Soon 45. And Not One Treats PSP Itself

Not one pill out of the 44 aimed at curing PSP…At 3am this morning, I did something I haven’t done for a very long time. I looked properly at my pill box. These days I don’t organise my own medication. My loving wife does it for me, and I simply take what appears at the […]

A Short Note of Hope: I’m Over Halfway There

OK. It’s not a goal. It’s an obsession. A little like attending my daughter’s wedding was. And I’m over halfway there. About 52%, actually. Before I go any further, this is not intended to be a religious post. It just happens that the goal that matters most to me right now is rooted in faith. […]

One Day Inside My Head: From Prevention to Faith, via Emojis and Death

I used to think I lived an insane life before PSP. I’ve taken it to a whole different level. Yet rewinding yesterday reveals something strange: how normal all that insanity felt at the same time. I suspect many people living with PSP, and many caring for them, will recognise that too. Life becomes simultaneously smaller […]

“Give Him the Best Death You Can”

Just a few hours ago I published a post about emojis. Now I’m sitting here writing a post called “Give Him the Best Death You Can.” That pivot says quite a lot about the strange journey I’m on, and the equally strange journey the people around me are experiencing. One moment I’m thinking about the […]

❤️ Is a Heart More Real Than “How Are You?” 🤔

I will admit that I still don’t speak Emoji particularly fluently. In fact, I used to hate them. They’re growing on me. ❤️ A friend recently asked how much, if at all, I value the emojis people leave in response to things I write. It made me wonder whether a tiny red heart can sometimes […]

The Truly Boring Things That Keep Me Alive

I have to avoid the mistake of reaching for the Challa. Prevention really is the key but is really boring. You have to be strong.

Eureka – Two Massive Discoveries This Month

I feel great! This morning I decided to look back over the last thirty days of blog posts I have written. There were 59 of them. I thought I would simply be reminding myself what I had written, but instead I learned a great deal about myself and about my battle with PSP. Oddly enough, […]

Stress, Fear and Anxiety: My Journey from Stress to Anxiety

Over the past few weeks I have made a discovery that genuinely surprised me. Until recently, I could not have really told you the difference between stress and anxiety. Like most people, I used the words to some extent interchangeably. Fear too. If something was weighing on me, I called it stress, largely because that […]

Giving Back: A Patient’s Perspective on Living with a Terminal Illness (PSP): Ten Free Discussions

Over the past few years I have written extensively, some would say obsessively, about living with Progressive Supranuclear Palsy (PSP), a rare terminal neurological disease. Recently, while mentoring someone, I found myself encouraging them to share their experience because it had value beyond themselves. A little while later, I realised I should follow my own […]

One Carer’s Email Today Gave Me Hope and Strength

Today I received one of the most important emails I have had in a long time. It came from someone who follows my writing about living with Progressive Supranuclear Palsy (PSP). The email affected me enough that I asked whether I could quote part of it anonymously. She very kindly agreed. She gave her blessing […]

A Presidential Pardon

The President of the United States can pardon almost anyone. This morning I found myself wishing I could pardon myself. Not for something I have done. For something I may one day do. That is an uncomfortable thought to admit. I have spent my life believing in personal responsibility. If we do something wrong, we […]

Windows of Time

My days are no longer measured in hours. I have learned that they are measured in windows. A window opens after I have slept or rested. For a while, I feel more like myself. I have energy. My mind is clearer. I can think, talk, enjoy people and do things. Then, without much warning, the […]

Why Me? Why Us?

It is 3am. I am sitting in my wheelchair asking myself a question I try not to ask too often, because I don’t know the answer. It is as simple as that. Why me? Why us? Us, as in my family. My wife. My kids. My Mum. My siblings. Why do I have to go […]

Two Bens and Ten Minutes

This morning, for ten minutes, I was “Normal Ben”. I didn’t realise quite how extraordinary that was until it stopped. I was genuinely upset at losing that brief period of normality in a way I had not felt before. I had woken up feeling “PSP Ben”. Slow, stiff and rigid, turning in bed felt like […]

Hope

  I have complained a couple of times this week. I have also written some pretty emotional things. That is PSP. It can make one bad day, or even one bad hour, feel like the whole story. But it isn’t. The week is ending, and the bottom line is that I’m still good. My cognitive […]

Science Sees PSP Differently from How I See PSP

Science sees PSP differently from how a patient, or at least this patient, sees PSP. Perhaps that is inevitable, and perhaps there is nothing wrong with it. Scientists and patients are looking for different things. Maybe I should stay away from the science altogether. I am not a neurologist, researcher or statistician. I am a […]

Idiocy or Impulsivity? Breaking the Spiral Behind My Fall

Last night I fell. Amongst many other things. If you know anything about Progressive Supranuclear Palsy (PSP), your first reaction is probably, “Well, that’s what PSP does.” Normally, I would agree. This morning, after a few hours’ sleep, a hot shower and a much-needed espresso, my first reaction was much simpler. What an idiot. Then […]

Apparently, I’m Still Very British

My dictation software keeps track of the word I use most often. Apparently, my most-used word is “please.” I was absurdly pleased to discover that. I had honestly expected “sorry” to come first. It didn’t. I don’t have the full top ten, but I would be deeply reassured if “sorry” turned out to be lurking […]

Yes, I Do Want to Hear from You

Blogging can be surprisingly lonely. For about sixty seconds I considered putting together a formal readers’ survey. Then I realised I didn’t actually want a survey. I write primarily for myself, so I doubt it would change the way I write very much. Besides, hardly anyone would complete it, and I’d probably end up feeling […]

Mindset – No Plans? What Was I Thinking…

This is a perfect example of how attitude and mindset, and an espresso, can make all the difference. Just a few minutes ago, I wrote and published a blog about having no plans. I woke up this morning with a really negative attitude – I was heading towards a bad place. Then I had my […]

The Film Blog I Regretted Writing May Be My Most Profound

  I almost deleted the blog I published earlier today. Not because it was inaccurate, and not because I had changed my mind about anything I had written. I wanted to delete it because I found it deeply embarrassing. The blog was about spending the afternoon watching The Rock with my live-in carer. Two enjoyable […]

I Got to Watch My Favourite Film of All Time

I’ll be honest – even after a short sleep this afternoon, I didn’t feel great, so I decided to watch my favourite film of all time, The Rock, starring Sean Connery and Nicolas Cage. I watched it together with my live-in carer, who was seeing it for the first time and really enjoyed it. For […]

I No Longer Trust My Own Sense of Time

I feel as though I’m living in an episode of Law & Order. It feels like real time, but it isn’t. Somewhere along the way, I realised that I no longer trust my own sense of time. That is a strange sentence to write, but I think it is true. The thought came to me […]

Of course I use AI to write my blogs…Here’s how…

This is an issue I want to address because I believe it can help a lot of people. It may also give me ideas to improve in any feedback I get. People ask me how I use AI – which tools and which process and I have decided to write an in-depth article on the […]

Handing Over the Dressing: A Note on Patient Dignity

I am currently part-way through handing over the dressing part of my day, and it is a strange phase to be in. PSP does not switch abilities off cleanly; it dims them unevenly. Some parts of the day I am more awake and more balanced; at others, much less so. For now, on many days, […]

I Genuinely Have No Idea How This Will Play Out

I am kidding myself, right? I have PSP. It will almost certainly shorten my life, and the road towards its end may be very nasty indeed. How nasty? Someone I had been supporting, after they were given a possible diagnosis of PSP, had an unexpected medical emergency last week. Further investigation, including an MRI (a […]

Budgeting – Passing on the Knowledge

There are jobs nobody wants to do. Cleaning the toilet. Washing a sink full of dishes. Looking for the pair of glasses that has somehow disappeared for the third time today. And then there is budgeting. Nobody has ever woken up and said, “I can’t wait to update the family spreadsheet.” (OK, I admit that […]

Not Bad. Pat on the Back.

I’m not very good at celebrating my own achievements. Like many people, I tend to notice what has gone wrong long before I notice what has gone right. If something is improving, I quietly move the goalposts. If something is getting worse, I spot it immediately. Living with Progressive Supranuclear Palsy (PSP) probably doesn’t help. […]

Buddy, Our Dog’s Hidden Superpower

I never truly believed people who said dogs have a sixth sense. Then our dog started detecting my PSP episodes before my wife and I knew they were happening, time after time. Before COVID, I wasn’t really a dog person (that is British understatement). The hair, the smell, the barking, the puddles on the floor, […]

The One Thing PSP Hasn’t Taken

This afternoon I warned my therapist that I thought I was going to write a blog post about something we had just discussed and that I had only just realised. She smiled. Clearly, she already knew there was very little chance I wasn’t. As I sat down to write, or rather to dictate, I hesitated […]

My Thanks to the Teachers I Never Expected

Every so often a message arrives from someone caring for a person with PSP. One came this morning. They described their loved one whose speech had all but gone, for whom communication had become nearly impossible, even via thumbs up or down. They said my articles sometimes helped them picture what their loved one might […]

My iPhone Has Become… Just a Phone

For as long as I can remember, my phone was almost an extension of my hand. It was the first thing I reached for every morning and the last thing I looked at before going to sleep. If I ever left it at home, I would happily drive back to collect it. I always had […]

Two Mothers-in-Law for the Price of One

I publish this with the full knowledge and approval of my mother-in-law. We were on a video call a few minutes ago when PSP decided to demonstrate one of its more unusual talents. Instead of one mother-in-law, I could see two. Both were of equally excellent quality. One image sat slightly higher than the other, […]

Fear & Uncertainty When Symptoms May Collide

Over the past few days, I had been more breathless than usual – enough that my physiotherapist noticed, enough that I was reaching more often for my asthma medication, and although I kept it low-key (denial, mostly), I had at least booked a doctor’s appointment for this evening to discuss exactly this. Last night the […]

Turning in Bed – You Have No Idea

The studies mention difficulty turning in bed, but those words do not begin to explain how materially it changes your life. It was similar with my eyes. I was told that PSP would affect them, but I had no idea what that would actually mean. To be honest, I still have no idea what may […]

Push the Button

I have extraordinary family and close friends who have travelled this journey with me. They support me day by day, in ways that are difficult to describe and impossible to repay: practically, emotionally and without fail. I cannot thank them enough for everything they do. The truth is that I probably do not thank them […]

A Strawberry Yoghurt, an Espresso… and Life Is Good

I just had a strawberry yoghurt, I’m drinking an espresso, and I’m writing this blog. I feel good. Life is good. “Life is good.” That is completely ridiculous. I woke up unable to see because both eyes were almost completely glued shut with the now familiar mixture of goo and crust that PSP seems determined […]

Friday or Sunday?

Ask anyone who has moved to Israel and, sooner or later, you’ll arrive at the great national debate: is the Friday you gain worth the Sunday you lose? To me, it makes absolutely no difference. Every day, perhaps with the exception of Shabbat, feels much the same. The distinction between weekdays and weekends has almost […]

Mmmm Mmmm Mmmm Mmmm

Strange title for a blog. I can’t claim the credit. Siri came up with it this morning. I asked Siri to play “My favourites shuffled on Apple Music”. Instead, with complete confidence, Siri replied it was playing the song: “Mmmm Mmmm Mmmm Mmmm.” If ever I needed proof that my speech isn’t always recognised as […]

Vacation /HolidayTime Is Tough for Me

Summer used to be one of my favourite times of the year. If it had been up to me, we’d have been on a plane somewhere by now. Over the years we had some wonderful family vacations, mainly across Europe. I was usually the one looking for the next destination or spotting a good deal. […]

Don’t Sweat It…Literally…

It’s amazing how illness changes your perspective. There was a time when one of the biggest worries in my life was something I almost never spoke about. Sweat. Not the healthy kind after exercise, but relentless facial sweating that seemed to appear at exactly the wrong moment. For nearly thirty years I quietly organised my […]

The Cliff Never Came

I will admit, I was worried about what would happen after my daughter’s wedding in March. It was probably the happiest day of my life. Through all the progression of PSP, all the uncertainty and all the planning, I simply wanted to be there and experience every moment I could. It became such a huge goal […]

The Surprisingly Low-Tech Battle for My Eyes

One of the things that has surprised me most about living with Progressive Supranuclear Palsy is not the disease itself. It’s how incredibly low-tech many of the ways I cope with it have become. We’re living in an age of artificial intelligence, self-driving cars, robotic surgery and wearable computers. Yet every morning, one of the […]

I’ve Just Been Diagnosed with PSP. What Do I Do Now?

There will be a moment when those three letters hit you: PSP. It may happen in your neurologist’s office, or it may come later, sitting in the car park, or after you have gone home and searched the internet. However it happens, there comes a moment when the reality sinks in. It happened to us […]

I will not fall into despair

It happens to be the National Day of Mourning for the Jewish People and there is a lot of despair in the air and in the words we have been saying. But for myself, I refuse to. Despair is the complete loss or absence of hope and despite my condition continuing to progress and the […]

The Titanic’s Orchestra Had 2 Hours and 20 Minutes. What Will I Do With Mine?

The orchestra aboard the Titanic is believed to have played for almost the entire evacuation, continuing as the ship slipped beneath the freezing Atlantic. For around 2 hours and 20 minutes, while panic spread and passengers searched desperately for lifeboats, they played on. These were their names: • Wallace Hartley (Bandmaster and Violinist, aged 33) • […]

FL-41: Sometimes the Answer Is Right Next Door

Over the past few weeks, I have searched far and wide for something to ease the problems with my eyes. In the end, the answer turned out to be just five minutes from home. My eyes have become one of the biggest challenges I face with PSP. They are not my only symptom, but at […]

Euthanasia – Has My Position on Assisted Dying Changed?

Over the past few months, a surprising number of people have asked whether my views on assisted dying have changed now that I have reached what many describe as the “hard” stage of Progressive Supranuclear Palsy (PSP). It is not a question I have wanted to answer publicly. It is deeply personal, highly emotive and, […]

For Those Fighting Serious Illness Alone

I mention all the time the incredible support I receive from family and friends. I have also spoken about how fortunate I am not to face serious financial worries. That security came through many years of hard work, not because I was born with a silver spoon in my mouth. Don’t get me wrong, the […]

Some Good News…

I have some good news. It feels strange writing those words because so many of my recent posts have explored the challenges of living with Progressive Supranuclear Palsy (PSP). The fears. The pain. The uncertainty. Those things are still very real. But this morning, being the CPA (Retired) that I have always been, I looked […]

We Need to Be Kinder to Ourselves

The last few days have seen me write some difficult articles. They have been honest because they reflected exactly where my head has been. Living with Progressive Supranuclear Palsy is not always inspirational. Sometimes it is frightening. Sometimes it is lonely. Sometimes it feels as though the disease changes the rules just as you think […]

Picking myself up – enough of the funk

Hauntingly Lonely: Surrounded by Love but Alone with PSP

Last night, PSP reminded me of one of its cruellest contradictions. I have rarely felt so surrounded by love, yet so completely alone. I sometimes feel like a journalist on an undercover investigation into this disease. Just when I think I understand it, PSP uncovers another layer I had never anticipated. The contrasts it creates […]

Naming my Fear – I Simply Have No Idea What Happens Next

I have been thinking about writing this for a while and have chickened out but I have decided that I have to. I have to address my fears. I know a great deal about PSP, probably more than is good for me. I have read the research papers, spoken to the specialists, followed the experiences […]

How Much Do You Want to Know?

One of the hardest parts of living with Progressive Supranuclear Palsy isn’t the disease itself. It’s the uncertainty. How much do you want to know about the future? How far ahead do you want to think? Should you prepare for what might come, or simply concentrate on today? The uncertainty of what comes next can […]

The Job I Never Applied For

I looked at my calendar for the week: empty. My inbox: mostly spam. My travel plans: none. My week is largely a blank canvas. PSP will decide much of what gets written on it. You would be forgiven for thinking I have very few responsibilities left as a patient. Oddly, the opposite is true, and […]

Bored? Everyone Has a Solution

Boredom is one of those subjects that everyone has an almost instant opinion about, me included. Mention you’re bored and watch what happens…within seconds, someone will have a solution. “Watch some television.” “Do a puzzle.” “Read a book.” “Listen to a podcast.” “Try an audiobook.” “Play chess.” “Learn a language.” Everyone has something that worked […]

A Creative Explosion Within Four Walls

I hate PSP. I didn’t want PSP, but I have to acknowledge it has led to the greatest creative explosion of my life. For that, I’m very grateful. Maybe confined most of the day to four walls, but those four walls thanks to technology, have not held me back.

On the Fly: My PSP Decision Bank of Questions

Yesterday, one of my fellow PSP comrades-in-arms used a phrase that has stayed with me ever since. He said that life with PSP is lived “on the fly.” The more I thought about it, the more I realised that those three words may be the most accurate description of this disease that I have heard. […]

“It’s Coming Home”

It’s Coming Home – PSP doesn’t have to be all nightmares and fears, it can include dreams and hopes too Tonight, like millions of other Brits, PSP or no PSP, I’ll be hoping that football is finally “coming home”. I’ve hoped before, many times. Every tournament seems to begin with the same optimism, the same dreams […]

When. How. And Sometimes… Again.

Yesterday I unexpectedly reversed one of the biggest decisions of my journey with PSP. It reminded me that life with a progressive illness is shaped by two questions: when to change and how to live. Much about the way we live our lives comes down to two distinct types of decisions: When and How. Living […]

Honesty About Sleep: A Button I Can Still Press

How much of my poor sleep is PSP, and how much is still within my control? An honest look at the science behind sleep, the reality of living with PSP, and why pressing one small button can still make a difference. When you think about the things that most influence life with Progressive Supranuclear Palsy […]

Being Married to Someone with PSP

Today is our twenty-ninth wedding anniversary. My wife will instantly wonder why I have chosen to write this but I think it becomes clear that this is a much broader post…so honey, please read on. As I thought about what to write, I realised something. Almost everything I have written over the past year and […]

Sparkling Wine, a Hotel and the Wimbledon Final

There are moments in life that remind you to stop looking too far ahead. Living with Progressive Supranuclear Palsy (PSP) means the future is uncertain. I don’t know what tomorrow will bring, sometimes I don’t even know what the next few hours will bring. That uncertainty has changed the way I think about happiness. It […]

The Power of One Kind Word

One thing has surprised me during this journey. I’ve never asked people to comment on my blogs. At least, not that I can remember (other than on specific points re PSP). I’ve never written with the expectation of encouragement. I write because writing helps me make sense of what is happening, and because if something […]

I made a mistake and turned an ambulance away. The templates that fix it (for you to download).

I was lucky. I made a bad call, and we were not ready for it. My wife called an ambulance. I turned it away. What I missed was the one detail that should have overridden everything: my tongue hung out to the side, and that had never happened before. It was not part of my […]

PSP? Something Else? Should I Have Gone in the Ambulance?

This week left me with more questions than answers. Not just about Progressive Supranuclear Palsy, but about the decisions we make when living with a progressive neurological disease that moves at the pace PSP moves. How do you know when a symptom is “just your condition” and when it is something entirely different? At what […]

Crawling is Back in Fashion

I have rediscovered the art of crawling. Most people spend the first year or so of life trying desperately to stop crawling and learn to walk. Apparently, I have decided to reverse the process. My live-in carer despairs of my impatience. His favourite phrase is, “Wait a minute.” Far too often, I ignore the request. […]

My Positivity Cheerleader

This morning, a close friend and I had a fascinating conversation about positivity. We weren’t trying to convince each other. We were trying to understand each other. He sits firmly in what he calls the “pro-positivity camp.” For him, life is almost binary: you can choose optimism or you can choose negativity. Whatever circumstances you […]

The Hospital Bed Question: When Is It Time?

A couple of weeks ago, I wrote about being told I needed a hospital bed. I was not ready. Fortunately, I thought I had plenty of time. The physiotherapist explained that the waiting list was around eight months, so although I completed the paperwork, I filed the whole thing away in my mind as a […]

My Blog Is a Selfish Indulgence

That is a strange thing to write after publishing so many posts about living with Progressive Supranuclear Palsy (PSP). I know many people would disagree. In truth, so do I…partly anyway. My hope has always been that these blogs raise awareness of PSP, help other patients and carers, and give people a better understanding of […]

Wheelchair Tennis @ Wimbledon

Even on a slow news day, there is still plenty to learn about myself. Today has been one of my better days. I woke feeling brighter than I have for quite some time. Even my sensitivity to light was noticeably less than usual. Experience has taught me not to assume tomorrow will be the same, […]

Am I Frightened of Stillness?

It is a question someone asked in response to my last post. Am I frightened of stillness? The answer, I think, is yes. I have never been a particularly patient person. I have always needed to be occupied, engaged, moving towards something. Sitting still has never come naturally to me. Even now, my carer will […]

How I Plan to Face Down My Fears

I will not pretend that I have not been angry or afraid over the last two days. The nerve pain has returned, and today I experienced something that genuinely frightened me. For the first time in a long while, I found myself confronting a hard truth: how do I face my fears when I know […]

Don’t Write When You’re Angry and in Pain

It is said that you should never write when you are angry. Today, I am breaking that rule. This is not completely raw. There are drafts that I have already discarded because they were too raw. But I am angry. I am in pain. And I feel that I need to try to explain what […]

101 Moments: England, Mexico… and One Remarkable Quote

This morning, in the middle of the night, I sat with my son to watch England play Mexico in the World Cup. It was unforgettable. For 101 minutes, I was completely absorbed. Every pass, every chance, every save. For those 101 minutes, PSP took a back seat. We were simply two England supporters sharing the […]

I’ve Always Been “Photophobic.” Now It’s Medical.

I’ve never been a big fan of having my photograph taken. Selfies have never really been my thing. Unlike my children, who are experts—and, it sometimes seems, much of the rest of the world—I don’t feel the need to document every occasion with a photograph of myself. Although, to be fair, I probably make up […]

Perhaps “Torture” Wasn’t Clear Enough

Yesterday I wrote about one of the most extraordinary 24-hour periods of my life. It began with immense joy as I had the privilege of leading the Friday night service. It ended in what I can only describe as torture. Many of the messages I received afterwards focused almost entirely on the joy. Please don’t […]

From Joy to “Torture” in Under 24 Hours

I don’t quite know how to describe this Shabbat. It contained some of the happiest moments I have experienced in recent months and one of the most difficult days since my PSP diagnosis. At times, the experience genuinely resembled what I can only describe as “torture”. As I write this, the brightness on my screen […]

“You Look Great” – Three Words. Many Layers. One Complex Truth.

Postscript Edito’s Note: A few have called me out on this post for making it too complex – here is my summary – just saying “You look great” is in my view not enough,, from my window as a patient – follow up with “How are you, really?” to know the honest reality which lies […]

Who Knew Rose-Tinted Spectacles Were Actually a Thing?

There are purchases you make because you need them. There are purchases you make because you want them. The clever bit comes afterwards, when you explain to yourself why you really needed them all along. This week I managed both. I treated myself to a new watch. There was no deep medical reason. No careful […]

Photophobia: Vampires, Darkness and Sunglasses

There are lots of things I imagined might happen as I got older. Wearing sunglasses while watching television wasn’t one of them. Neither was sitting at my computer wearing sunglasses and a baseball cap pulled down low, looking like I’m trying very hard not to be recognised. There are, however, no paparazzi outside the house. […]

PSP Costs….

It costs your future. It costs your present. It costs the futures and the presents of many of those around you as well. It costs financially. Not simply because treatment, equipment and care are expensive, but because the disease often forces people to stop working. In many families, both the patient and the caregiver lose […]

Living with the Guilt

In February 2026, I wrote an article called Guilt – the Energy Thief We Can’t Afford. Almost six months later, I’m still grappling with the same issue. It is an emotional problem, not a logical one. I know I didn’t give myself PSP. I didn’t choose this disease, and I didn’t ask for any of […]

1 Year Retirement Anniversary – My World Has Shrunk and Grown in Ways I Never Imagined

A year ago, my world suddenly became much smaller. Or so I thought. On 30 June 2025, I officially left PwC after an immensely fulfilling career. At fifty, I simply could not imagine a version of Ben that wasn’t a partner in a major consulting firm. It wasn’t just my job. It had become part […]

Tragic Optimism: Refusing to Let Tragedy Have the Last Word

Today, my friend Rabbi Nikki Liss sent me an article detailing an interview Rachel Goldberg-Polin gave to Anderson Cooper. I read it almost immediately. After everything she has endured following the kidnapping and murder of her son, Hersh, I expected to read about grief, resilience and hope. Instead, I came across a phrase that stopped […]

“The Grey Disease” – a response from a caregiver

I received a number of messages of support following my last post on the Anger I felt. One stood out and I asked the person for permission to quote it anonymously and they agreed. The quote said (unedited) “Ben this could have been written almost word for word by my husband 2 years ago. It […]

Two Embarrassments, an Apology, and an Explanation

I’m writing this for two reasons. The first is to help people living with PSP, and those who care for them, understand that what happened today happens to other people too. Whether it is neurological, psychological or a combination of both is something I’m no longer interested in debating. That’s way above my pay grade […]

The ‘Hospital’ Bed…Oh No…

Under our HMO we had a visit from a lovely physio who carried out an assessment. He agreed that I need a specialized wheelchair and a hoist to help me and my carers transfer me safely from chair to bed. Up to this point, we were good. He then said, “You will also need a […]

Today I Got a Little Bit of Me Back

I had to write this immediately because I wanted some of the joy I am feeling right now to find its way onto the page. Ever since my eldest daughter was little, I had a very simple dream. When she eventually got married, I would become that slightly annoying father who would occasionally pop in […]

Living With a Live-in Carer

This was one of the stages of Progressive Supranuclear Palsy that I dreaded most. For months I resisted it. Every assessment, every discussion with doctors and social workers seemed to be leading towards the same conclusion: *you need a live-in carer.* To me, that didn’t simply mean accepting more help. It meant accepting another progression […]

A Letter Many May Never Be Able to Say

A Letter Many May Never Be Able to Say Most of us prepare for the practical things. We write wills. We organise our finances. We leave passwords, insurance details, spreadsheets and instructions. We spend hours making sure the people we love will know what to do when we no longer can. But after many conversations […]

The Story My Blogs Reveal

I have always been fascinated by statistics. Numbers rarely tell the whole story, but they often reveal things that we either hadn’t noticed or perhaps didn’t want to acknowledge. After writing 349 blog posts since my diagnosis with Progressive Supranuclear Palsy (PSP), I began wondering whether those blogs contained a story that extended beyond the […]

A big day: My first day for so long without extra painkillers

Today was the first day in many weeks that I haven’t needed a painkiller beyond my now regular prescribed gabapentin. There was still the faintest trace of pain, but nothing of any consequence. I wasn’t trying to be brave. I simply didn’t need anything else. For the first time in weeks there were no opioids, […]

A Real Miracle

There is a great deal of discussion about the mental health impact of serious and terminal illnesses, both on patients and on those who care for them. The attention is well deserved. The emotional toll can be enormous. Yet I would like to look at the subject from a different angle. The miracle is not […]

The PSPA Report: Why the Focus on Misdiagnosis Matters

I have been reading the latest PSPA (PSP Association) report and highly recommend it: https://www.pspassociation.org.uk/pspa-survey-report-2025/ One of its most important findings is something I have written about before, but which the PSPA addresses with far greater authority and scale: misdiagnosis. According to the report, 58% of people living with PSP or CBD were initially diagnosed […]

Pain – From Fling to Long-Term Relationship

As a religiously observant and prudish person who met his future wife at 19 and has been married for nearly thirty years, I am really no expert on flings. In fact, my friends and family would probably consider me the last person on earth likely to write a racy novel. This is about as close […]

A Moment of Reflection at the Table – Joy, Sadness, Comfort & Boredom

On some days there is no huge emergency or celebration, just reflection, and that is how today is going so far. But it was an interesting reflection and, hey, as I am bored, I needed to write about it. I had a lovely moment this morning when I found myself sitting at the same table […]

What’s Next?

Is it a question I should allow myself to ask? Well ideally no – it is far better to stay focused on the present and to focus on the positive things I undoubtedly possess but I have to be honest and admit that my recent brush with acute pain has left me fearful about whatever […]

Not Quite the Queen’s Gambit

I played chess this morning against a friend, two games in fact. It was something of an experiment. My pain was bad, so I had taken the opioid medication prescribed for me. Part of me hoped for a Queen’s Gambit moment. Perhaps the ceiling would reveal a giant chessboard and show me the winning moves. […]

257,608 and 305,382

257,608. That is the number of words I have spoken into my AI-supported dictation app in the four months since I bought a licence. Excluding days when I don’t write, such as Shabbat, that’s over 2,500 words a day. Including the typing I still do when I am able (and to correct the dictation), the […]

A world of Pain and I am not talking about me

A World of Pain… and I’m Not Talking About Me Now that the pain is coming under control, although it is still very much present, I wanted to learn a little more about it. That is how I am wired. When something affects me, I want to understand it better. In this case, I wanted […]

 Love & Good Vibes and the Massage Gun

My yoga mat has a phrase on it: **Love & Good Vibes**. I must have looked at it hundreds of times, but today is the first time I have actually taken notice. Daily yoga is a good way of knowing where I am physically. A number of exercises that even yesterday I found difficult felt […]

Learning Never Stops – I Have No Idea What Is Next

I think I have learned more about different aspects of life in the last few years than at any other point in my life. Unlike university, these are not electives I chose. They are life lessons handed to me for reasons I do not understand but have learned to accept. The list of subjects is […]

For Now, the Pain Is Receding

It has been a very long week. As I write this at 4 p.m. on Friday afternoon, there are finally signs that things may be starting to turn. I have no idea what tomorrow will bring. I do not know whether this improvement will continue, whether the pain will flare up again, or what challenge […]

I Hope This Pain Is My Goat

I have been thinking a lot this week about an old story. Versions of it appear in different cultures and faith traditions, but the basic idea is always the same. A man goes to a rabbi, priest, or wise elder and complains that his life is unbearable. He lives in a tiny home with his […]

The Slowdown: When Everyone Else Is Busy

As I sit here recovering from another painful episode, I am reminded how differently illness changes the rhythm of life. Most people my age are busy. They have jobs to do, families to raise, grandchildren to see, holidays to plan, and a hundred other responsibilities competing for their attention. Their days are full. Mine, increasingly, […]

Nerve Pain and the Patients Without a Voice

At 6:45 this morning, I find myself sitting in a chair recovering from the second major nerve pain episode of the week. When I say pain, I struggle to find the right word. Acute doesn’t seem strong enough. Severe doesn’t seem strong enough. Excruciating gets closer. The pain was so intense that it made me […]

For now… emergency over. Time for Messi

I have been scared of many things over the last 36 hours: the sheer pain of the experience the night before last, the volume of medication I have taken, the fear of developing an opioid dependency, and the question of what comes next. I am happy to say that this round appears to be concluding […]

Round 2&3….

I feel a bit like a commentator at a sporting event, except this is helping me process what is happening and a lot of people have asked for updates. This is easier than replying individually. After a relatively quiet morning – I even managed a game of chess – it came roaring back, just as […]

A Horror Movie I Just Stepped Out Of…I dread Part II

I am sitting here recovering from what I can only describe as hell. About half an hour ago, I was lying comfortably in bed when severe nerve pain suddenly exploded in my upper thigh. I have no idea what triggered it. What I do know is that it was unlike anything I have ever experienced […]

More Vanilla?

I recently spent a ridiculous amount of time thinking about whether I should order more vanilla ice cream. Not ordering it. Not eating it. Thinking about it. I hate the fact that I’ve gained weight since ending up in a wheelchair, despite exercising regularly, and that’s what triggered the debate. The truth is that my […]

Peripheral Neuropathy (Nerve Pain) in PSP: My Sample Size Is 1. Science Has 9 and 23.

It’s 2 a.m. I am not awake because I want to be. I am awake because my leg hurts. So.. I spent the evening studying a word someone mentioned in a PM which I can’t believe I didn’t know. What struck me most tonight was that, until a few hours ago, peripheral neuropathy wasn’t even […]

I choose Pain and Purpose

Last week was a bad one, mainly due to the introduction of a new drug. It knocked me for six in a way I find hard to explain. I was truly in shocking pain from my leg: what seems to be a nerve type pain in my hip and thigh area. Truly terrible pain. My […]

Intermission

The curtain is coming down for a little while. Not on the story, just on this chapter. The last couple of weeks have been intense, to say the least. PSP has ratcheted up, as have the effects of some of my medications, although I am gradually getting those under better control. I am tired. With […]

Grateful

It is not the word many would use, but it is how I feel tonight. I have probably been through every emotion today. This morning brought fear, as I again experienced a shutdown moment and was stuck for a good thirty minutes. During the day I felt a huge range of emotions: happiness as my […]

It’s the Wheelchair, Stupid! [No. 9]

I have to say, I’m a complete idiot. When I bought my last wheelchair (No. 8), I focused almost entirely on my weight and not my height. The supplier, when I asked over WhatsApp, assured me it would suit my height as well, but I never double-checked. Height matters. That, it turns out, is part […]

Freedom

I have written at length about the pain, anxiety and fear of PSP. All of it entirely true. But there is one upside I had not expected. Freedom. You are probably reading that word and laughing. He is tied to a wheelchair, can’t drive, can’t travel abroad, has a full-time carer. What freedom is that? […]

PSP Through Two Videos: Pure Joy and Sheer Terror

I have never really shared raw video on my blog before. I usually avoided it. But today I feel I have no choice. I intend not to share again. I want people to see what PSP can actually look like, even if only for a few seconds. At the same time, I also want people […]

Emotions Don’t Queue

One of the strangest things this disease has taught me is that human emotions are nothing like I once imagined them to be. Before PSP, I think I subconsciously believed emotions arrived one at a time. Happiness or sadness. Gratitude or anger. Hope or despair. In good old fashioned British style, each one waiting its […]

Why My Smallest Book Suddenly Feels Like My Most Important

I have written countless blog posts and four books, with a fifth now underway. Yet strangely, the work that has affected me most is not one of the larger projects. In some ways, I guess this is a plug, but it is a well-earned plug after a lot of work. It is a small booklet: […]

One of Those Nights That Make It Worthwhile

I have hit myself, and those who read my articles, with a lot of dark messages these last few days, but occasionally something happens that reminds you everything is still worthwhile: all the pain, all the anguish, all the anxiety. Tonight was one of those evenings. It was nothing dramatic or extraordinary: dinner for my […]

80%? No way

I have been flawed by the actual drop (at times) in the sound of my voice – I thought a marginal 5-6% but my kids think it closer to 80%. Whatever the level it is staggering to me

So now what?

I made a big revelation to myself and others in my post last night. I think — in fact I know — that the behavioural changes PSP brings are starting to reveal themselves: anger, anxiety, major mood swings and also apathy. I have been blaming others for my moods, but it is me, and I […]

Urgent. I Think It Is Happening

This is perhaps the most important blog I have written. It is certainly the hardest to write. There have been many posts over the last few days, but this is one I never planned to send. I have often spoken almost in the third person about the behavioural changes caused by PSP. The anger. The […]

Goodbye Reacher. Goodbye Bryson. Goodbye Jack Ryan.

Like so many people, one of my favourite activities for as long as I can remember has been getting into bed, curling up, and reading a good book. Sometimes for a few minutes until I drift off with the book planted on my stomach. Sometimes for hours, especially on Shabbat when, of course, I should […]

The Worst Thing of All…

I read this morning a number of comments on PSP support groups and it is fair thatk the same theme comes across so often. It was articulated by someone today who simply said: “Being honest and meaning it in as kind a way as possible, the person you knew is gone and you won’t see […]

There are simply no right or wrong answers.

It is relatively clear to everyone that the last few days and weeks have taken their toll. People have pointed it out to me in well-intentioned comments on social media. I have been urged to relax and metaphorically take a chill pill. I am retired and relatively financially secure (having worked very very hard to […]

Psalms: What Do U2, Bob Dylan, Leonard Cohen, and Millions of People Around the World Have in Common?

One thing that surprised me while creating this Guide to Psalms (Tehillim) was just how universal Psalms really is. The Bible remains the most widely distributed book in history, and according to Bible Gateway, one of the world’s largest Christian Bible platforms, Psalms alone accounted for more than a third of the 100 most searched […]

What happens when I can no longer write this blog? Will I have a backup plan?

A few people have asked me this question recently. – do I have a backup plan? There may come a point where I can no longer write. That could happen for several reasons, but the most likely one is simple: PSP eventually overwhelms me and forces me off the road I am currently travelling. People […]

I lied to you

I said I was brave and unafraid. That was not entirely true. I am one hell of a difficult friend and family member. I want my friends around me, but I put up a wall. I am positive and full of gratitude, and then suddenly angry and filled with guilt. I want people to recognize […]

Catheters, Customs, and the Joy of Overdoing It

Today has been a pain in the neck for more reasons than I can say, and not all of them are PSP-related. Some things are best left off the blog. But the PSP side of the day started badly enough. This morning I woke up in acute pain. Real pain. The kind that leaves you […]

Am I Afraid?

It is a question I get asked from time to time, and I never have a simple answer. The honest answer is both no and yes. No. I am a G-d fearing person who believes there is a reason for everything, and that this challenge has been given to me because, by definition, I must […]

The Perspective I Hope You Gain Without Suffering

Last week I wrote about something most precious lost. The article was about my decision to step back from leading services on the High Holy Days, but in truth it was about what that role had come to represent after nearly thirty years. Awe. Responsibility. Connection. Tradition. Purpose. All woven into my identity in ways […]

Two Voices

No, I am not going mad. But there are two voices conducting what feels like an Oxford Union debate inside my head, and most days neither one concedes the floor gracefully. I have deliberately not named them. Though at times they feel suspiciously like Thing 1 and Thing 2 in a particularly bleak Dr Seuss […]

Laughing in My Sleep

You Simply Have to Have a Sense of Humour I woke up this morning actually laughing in my sleep, giggling and physically chuckling to myself. It is a thing for me. After two nights of horrible, vivid nightmares which I will spare you, I woke up LOL, laughing out loud. I remember why. A few […]

Something Most Precious Lost

Leading the prayers on the High Holy Days has been incredibly important to me — more than I probably ever admitted, even to myself. I have been doing it for nearly 30 years, starting in Sheffield, then London, and most recently in my home community. I was dreadful at first and never remotely professional, but […]

One Night Away Was Great. But Hotels Are Not the Same Anymore.

My wife and I went away for a night, and it was lovely to have some time together. We really enjoyed the spa, room service, free wine in the lounge, and a fantastic breakfast and dinner. The hotel itself was top drawer. We had a disabled room, which made access with the wheelchair very simple, […]

Breathing Is No Joke

There are things in life you take completely for granted until you can no longer take them for granted. Breathing was one of them for me. For most of my life, breathing required no thought, no effort, and certainly no strategic planning. It just happened. Inhale. Exhale. Repeat. I assumed that if I was alive, […]

8 Hours Sleep. Yes, 8 Hours.

I don’t quite believe it myself. My Garmin sent me a badge for 8 hours sleep. My first ever. It happened, and I genuinely felt better for it. Not my leg, unfortunately. I went to bed with two hot water bottles and was still in terrible pain. But my head was better. I was brighter. […]

Thank You, Hot Water Bottle, and iPad

It’s a strange title. I know that. But these three things are what I want to talk about today, and right now, as I climb back from the low I’ve been feeling for the last few days, each of them means the world to me. Thank you First, and most importantly: thank you. To the […]

Short and Sweet

Today has been a tough day. My leg is in real pain, and after writing this morning’s post it became sharply clearer how much my speech has changed. A lovely friend came round and asked to move his chair so he could hear me. An innocent remark. Entirely without malice. But it carried weight. I […]

Immense Frustration and Possible Denial

Today almost every line I tried to dictate into my speech-to-text software failed. Not occasionally. Almost every sentence. It was, and honestly still is, deeply upsetting. I spent hours trying to finish a blog post and eventually gave up. The irony is that the post itself is probably 95% there. Unfortunately the other 95% consisted […]

An Ironically Boring Thing Is Weighing Me Down

PSP is frightening. It is a disease that slowly takes things away: balance, speech, movement, independence, certainty. When people think about a condition like this, they understandably focus on the big things. The dramatic things. The neurological things. But today, if I am honest, it is simply my knee and thigh that are bothering me, […]

Real Role Models

I have had role models who inspired me and then let me down badly when their flaws were exposed. I have also been called a role model myself – which is a deeply uncomfortable thing to be told when you know exactly how flawed you are. That tension is what this piece, and my next […]

Pain: Primary or Secondary? Po-tay-to, Po-tah-to.

I often hear about secondary symptoms. In research papers, in clinic appointments, in the way doctors talk about conditions like mine, there is a clear hierarchy: primary symptoms are the real story, the direct consequences of the disease itself. Secondary symptoms are the downstream effects, the knock-on consequences, the also-rans. Less direct. Less central. Somehow, […]

The Battery That Won’t Charge – (No) Sleep with PSP

I talk a lot about powering down. I should probably address powering up. I have used the analogy before of an old iPhone that suddenly loses charge, dying at 40%, shutting off without warning, no gradual fade. That is the powering down side. But there is another side to that analogy I have not spoken […]

PSP – The Constant Calibration of Risk

Most people experience risk as background noise. They assess danger constantly, of course, but usually unconsciously: crossing roads, climbing stairs, driving tired, standing on a chair to reach a shelf. Life depends on thousands of small calculations that happen automatically and invisibly. Progressive Supranuclear Palsy changes that completely. With PSP, risk moves from the background […]

A Different Body. The Same Me. Ten Years On.

Recently, I came across a video of myself on YouTube, filmed at an event around ten years ago. At the time, I had stepped away from consulting for a few years to take on a role as a VP at a 3D printing company. By coincidence, I had just recorded a new video for a […]

The Only Way Is Up

I don’t mean this literally, but it is the attitude I choose to embrace when my emotions let me. Reinforcement matters, especially as the disease progresses. Some messages are worth repeating. I had a standard check-in with my neurologist this morning, though I was not feeling great going in. The headline is simple: no new […]

The cheapest glasses ever: the irony is not lost on me

I received the most welcomed, most needed, most pleasant glasses yesterday and the irony that they were the cheapest and quickest pair I have ever bought was not lost on me. They are absolutely amazing, especially when combined with my now indispensable baseball cap of slightly disputed provenance. My son maintains he merely lent it […]

Preparing for the Specialist Appointment

It comes around every few months. A brief meeting, often under real time pressure, with one of the most important people in your care team. For us it is our neurologist. For those of us living with PSP, or caring for someone who is, it is a rare and genuinely precious opportunity. Too often I […]

What Buddy Taught Me About Frankl

My situation is a strange one. In the same stretch of time, I have written about terror in hospice contexts and about humor. That contrast is not theoretical. It is how things actually feel. One of my regular readers helped me make sense of that tension. She sent me a Viktor Frankl quote that had […]

Sheer Terror, Unfiltered

I realised something this weekend about the way I write this blog. Everything you read here is honest. I mean that sincerely. But it is also usually processed. By the time a post reaches you, I have normally drafted it, redrafted it, reflected on it, and slowly worked out what the experience means to me. […]

Humor: the unbelievable 85% statistic from a hospice survey

Humor appeared in 85% of hospice visits observed in one U.S. study, and in 70% of those cases it was the patient, not the nurse or family member, who initiated it. (Adamle & Ludwick, American Journal of Hospice and Palliative Medicine, 2005.) The authors concluded: “These findings were consistent regardless of hospice setting. Humor was […]

Coping with Fear

My computer did not want me to write this article. The dictation software, my usual lifeline, refused to cooperate. I then managed to override and delete a version entirely. The technology appeared to be sending a message: this is a subject best left untouched. Stubbornness won. It usually does. I felt this was an important […]

Botox and a Haircut – a normal day at the office

I don’t know why but I was incredibly nervous this morning before the Botox treatment. For some reason the concept of injections in the eyelids filled me with fear that I hadn’t felt for a long time. I guess it was the fact that way back when I was first treated I had a lumbar […]

Don’t “Put Yourself in Their Shoes”

This may sound completely wrong, but I have come to believe that one of our most instinctive ideas about empathy deserves to be challenged. We are often told that empathy means “putting yourself in another person’s shoes.” It sounds compassionate and wise. But as both a patient and someone who has watched extraordinary caregivers up […]

Eyes and Ears and Mouth and Nose

For some strange reason, I found myself thinking about a nursery rhyme just now. Those who knew me before PSP arrived will know this sort of mental detour is not entirely new territory. My brain has always worked in peculiar ways. It goes, well the British version anyway: Head, shoulders, knees and toes, and eyes […]

Living, Dying? Which? Both.

A follow-up to “Being a Friend to Someone Who Is Dying”. The feedback to my recent post was extraordinary – genuinely one of the most widely-shared things I have written, and it gave me a real sense that I had added something to people’s thoughts. But alongside the warmth came a debate I had not quite […]

Red Tape and Terminal Illness: I Was Spectacularly Naive

There is no escape from red tape. Not for the seriously ill. Not for the terminally ill. And not, it turns out, for someone with PSP, and in large part it is because almost no one knows what PSP is, or believes how serious it becomes in practice. I know this because I had no […]

Being a Friend to Someone Who Is Dying

[Author note – I received significant feedback on the use of the term ”Dying’ so I wrote a follow up – ‘Living? Dying? Which? Both] Many of my friends know me to be a control freak, so it won’t surprise them that I have now written a blog about them. “He simply can’t let go.” […]

It’s the birthday card that means the most

When I was a kid, I truly didn’t care about the birthday card. It was an add-on, an extra, frankly a waste of money. The present was the thing. Unless, of course, shaking the card hinted at cash or a cheque inside. Now, the words of a birthday card written with real thought, or a […]

Why I Sometimes Feel Stupid

When I freeze, when my body powers down or my eyelids close against my will, I sometimes feel simply stupid. What is wrong with me? All I need to do is lift my eyelids a fraction, shift my weight forward, take a step. It sounds absurdly simple. Just move. And until the moment passes, I […]

How Do You Wish Someone with PSP Happy Birthday?

Tomorrow is my 51st birthday and a couple of responses and some recent comments made me reflect. I have never been a big birthday fan, and I do not think PSP helps the overall mood. Each birthday marks the progression of the disease, a reminder of how much has changed since the last one and […]

Looking for Words of Inspiration as I Approach 51

What does 51 actually celebrate? As far as I can tell, the number signifies a triple 17 on a dartboard and an area in Nevada best avoided. Not much to work with. So I went looking elsewhere. I turned to the 51st Psalm. Psalm 51 is King David’s raw, unguarded prayer after confronting his sins […]

My Genre? Speed

My genre is speed. I have been thinking about my writing style. It is autobiographical, obviously. At times it is humorous, at times melancholy, sometimes upbeat, and sometimes all of those at once. But underneath the shifting moods, tone changes, and subject matter, what defines it is not emotion or reflection. It is speed. The […]

The World’s Easiest Sale

I was such an obvious mark. The world’s easiest sale. I was the salesman’s dream. Picture the scene. I roll into a healthcare store specializing in comfort and office chairs for those with bad backs, and massage solutions for all parts of the body. The store is even called “Doctor Back” in local language. I […]

It’s OK to Feel Melancholy

I am not one for big words. In fact, I am fairly confident this is the first time in six years of blogging that I have used this one deliberately: melancholy. Surely I would be better off with the far simpler word — sadness. But sadness isn’t right, and I’ll explain why. At 00:35 this […]

Just Stretch. Yes, Me, You. All of You.

I almost never give universal advice. It’s not my place, and quite frankly I recoil when other people do it to me. But today I’m going to abandon that rule and give you one piece of advice that applies to everyone reading this. Yes, everyone. I’m aware that makes me sound like an arrogant car […]

PSP Types: A Beginner’s Guide

I debated writing this post because it borders on science, which is not usually my territory. But the question of PSP variants comes up constantly in support groups, and I thought it was worth making an effort to provide a basic guide in plain language, for people like me who are trying to make sense […]

Start Your Day

There was an advert on TV in the UK in the 1980s with a cheesy jingle that came back to me with a smile this morning: “Start your day with Nescafé, coffee at its best.” It stayed with me. Not because of the coffee, but because of the idea. A quiet thanks is sometimes overlooked. […]

This Weekend’s Freak Sideshow Alongside the Main Event

A progressive disease moves in a steady line until, every so often, it does not. For two evenings in a row, my brain appears to have put on something I can only describe as a freak sideshow. But that is not the main event. The main event is far more predictable, and far more ruthless. […]

Sleep – It’s Not Raining, Stop Talking and Snoring

Sleep has consistently been one of the hardest symptoms for me, not just because it is difficult, but because so much else depends on it. When sleep goes wrong, everything else seems to follow. That has been true for six years now, although since I no longer drive or travel, at least the risk to […]

Blind at the Physio

The remarkable thing about this session is just how unremarkable it felt. I had a physio gym session with my physio and my carer, two people keeping a close eye on me, making sure I stayed balanced and safe. As I’ve mentioned recently, my ability to see goes from time to time, with increasing occurrence. […]

Akinesia & my advice learned the hard way, twice in 18 hours

Four months ago, I wrote about what I called “Power Downs”, moments when my body decides, without consulting me, to slip into standby mode. Not low power mode. Standby. Everything stops, except my cognition, which keeps running, fully awake, with nowhere to go. I gave them a friendly name because that is what I do, […]

My Sometimes Disservice to Those with PSP

I am a positive guy. I have a half-full attitude, and I draw strength from my faith, which means I talk about these topics, sometimes too much. Don’t get me wrong. I believe in these things deeply. I believe in making the most of whatever environment you’re in and whatever challenges G-d gives you. It’s […]

Pity? Pitied?

I remember when I was very young being taken to visit an old age home to see my great grandfather. We used to go often. Try as I might, I could not shake a feeling of pity for the people sitting in the lounge area. It was a feeling that their lives had stagnated to […]

Fourteen Months In: Still Me

It is fourteen months since I was diagnosed with Progressive Supranuclear Palsy (PSP), albeit it has really been with me for 6 years. But recent events have given me pause to reflect on where I am a year and a bit later, and for better or worse, the bottom line is that – I am […]

Botox and Blinded

There are moments with PSP that you simply cannot put behind you so easily, and that require a bit of processing. This is one of them. My eyelids closed. Not gradually. Not as a hint. They closed, and they stayed closed, for an hour or so. I was, to use the word, effectively blind. Not […]

My Legs Have Forgotten What They’re For

There is a moment, if you are a PSP patient transitioning to a wheelchair, when you look down at your legs and realise that a conversation is overdue. They were good legs. Excellent legs, albeit a bit too white. They took me around the world, up staircases and down airport terminals designed by people who […]

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

I just read a post on the PSP Blog of Dr. Lawrence Golbe, one of the world’s leading PSP neurologists, based at Rutgers Robert Wood Johnson Medical School, who has been writing this blog for clinicians, patients and families since 2014. In his latest post he pointed readers to a review article he co-authored, just […]

The Candle, the Disguise, and a One Line Message

Last night contained two moments. One made me smile and gave me some hope that I could rejoin a limited number of communal events again with an ability to cope with the noise, the light, and the presence of lots of people that have been causing me to freeze. The other reminded me, without mercy, […]

Telling Your Kids You Have PSP and All That It Means

I have not addressed this question directly before because I am in no way qualified in the trauma‑specialist department. But I was asked it by the wife of a newly diagnosed patient with PSP, and it gave me real food for thought. It felt important enough to share. I was, I suppose, “lucky” in a […]

PSP: Progressively Stealing My Vision

Progressive is the right word for this disease, and also a misleading one. It suggests something orderly, something you can see coming. In reality, PSP creeps. It does not give you a single moment of reckoning. It gives you a thousand small ones, each easy to dismiss, until one day the accumulation becomes impossible to […]

Explosive Rage Over… Trousers

I am not proud to admit it, but this morning I completely lost it. More than possibly ever.I banged my fists. I wanted to hurl a smoothie across the room. I was consumed by blind rage directed mainly at myself, and also at my wife and carer. Only the table took a pounding. But the […]

Do I Compare Myself? And To What?

I asked myself this question this morning, somewhere around 3 a.m. Why? I have no idea. It is just one of the ridiculous things I do when I wake up so early with nothing much to do other than ponder, think, and dictate. There are so many ways to look at life, and I guess […]

What on Earth Is Winning and Losing?

I was beguiled by a quote from George Eliot. I thought it spoke to me. “Any coward can fight a battle when he’s sure of winning; but give me the man who has pluck to fight when he’s sure of losing.” It sounded cool. Brave. The sort of thing you nod along to at dinner […]

It Would Be So Easy

It would be so easy to look down the road and feel only trepidation. I see where PSP patients go, and it is not, in general, a good place. What frightens me most is losing my dignity, losing control of my own destiny, and being trapped behind a wall of silence, unable to express what […]

Silence, Listening and PSP

Listening and being comfortable with silence have never been my strongest skills. They may need to be. I move fast. I speak quickly. I say what I think. And too often, I don’t truly listen. Silence has always felt uncomfortable. Even waiting for responses to something I’ve written can make me restless. It is something […]

“Bum Shuffling” to Happiness

My daughters both said I was nuts. I am stubborn, I insisted, and it was worth the world to me. My oldest daughter, who recently got married, moved with her husband to a small studio apartment about 15 minutes away. The problem: 10 to 15 steep stairs down to reach the front door, no bars, […]

Of course it is not normal

Yesterday I wrote about a feeling of profound calm and peace. It is real, and it surprises me as much as it surprises anyone reading this. This morning, rereading that post before sitting down to write again, I noticed a quote from Viktor Frankl in Man’s Search for Meaning that I had somehow overlooked before. […]

An inner calm and sense of peace

Over the past day or so, something has shifted. With the war temporarily on hold and my anxiety medication transition apparently back on track, I find myself enveloped by a tremendous sense of calm. I am profoundly immobile now, limiting my movements to avoid freezing episodes, steering clear of crowded places. It is, in its […]

The Suffering Olympics — and Why Nobody Wins

The term “Suffering Olympics” was coined by Antony Polonsky, a Holocaust studies scholar at Brandeis University, to describe the destructive habit of competing over whose trauma is worse. It has since found a natural, if painful, home in patient communities. Anyone who has spent time in a support group, fought for a research grant, or […]

WOW – What a privileged position I am in

Let me be clear from the start: I have not gone stark raving bonkers. I am not going for one second to say how happy I am to have PSP, or to be watching my own demise in real time. But, and it is a significant but, the very first thought that came to me […]

Visiting the Sick – This Patient’s Input

I recently wrote a blog post elsewhere about visiting the sick from a Jewish perspective. In this article I want to go narrower and more personal – to write about what visiting the sick actually means when I am the patient, and when the illness is PSP. Others may feel the same, others may disagree […]

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

I had to really fight to write this article today. Not a typical fight like those you’ve probably experienced in your life, or a fight against pain, but a fight against the complete lack of desire to get the computer out and write. I looked back at what I wrote on apathy on the 29th […]

Did you know? (FULL BLOG RESPOSITORY INCLUDED AS A PDF)

The words most referred to in my blogs these last 6 years were ‘hard’, ‘faith’, ‘positive’, ‘hope’, ‘gratitude’ and ‘fight’ followed by ‘fear’, ‘loss’, ‘meaning’ and ‘joy’. It is an extremely mixed bag but I think it is a fair representation of the journey I’ve had. Being a bit of a nerd I want to […]

Struggling to Stay Me

People will look at me and see original Ben. Some will even say I’ve grown an edge — developed a new career, found more meaning, become more spiritually aware. Something is off, though. I realised it at 3:00 this morning. I’m not a doctor, not a scientist, and I can’t speak in medical terms — […]

Anticipatory Grief

I positively surprised myself. Recently, I mentioned the topic of anticipatory grief, and I felt it was important – for myself, and perhaps for others – that it be addressed more fully. Wikipedia defines it as follows: “Anticipatory grief, also known as preparatory grief, refers to a feeling of grief occurring before an impending loss. […]

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

I had a little time out in the sun and by the sea with my wife and son and was feeling creative. I have put it a bit on the line and written a poem with no (and I mean no) AI involvement in its creation (although it helped me created the photo at the […]

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

I looked back recently at the ridiculous volume of material I’ve produced since my diagnosis – four books, hundreds of blog posts, more words than any sensible person should inflict on the world in such a short time – and asked myself a simple question: is there anything in all of that worth saying to […]

Candy Crush and PSP

Candy Crush and PSP????  I wasn’t sure what kind of post to write tonight. I tried multiple versions. I even started a Google Sheet on Anticipatory Grief, which I’ll share another time. Why? I felt especially anxious about the future for no good reason, other than a couple of difficult moments in what had otherwise […]

Toxic Positivity

I’ve written about positivity a lot. Possibly too much. And I’ve always meant it. I genuinely am, by temperament and by effort, a positive person. But I watched a short video in the early hours this morning, when I do most of my thinking, and it made me stop and ask myself an uncomfortable question. […]

Standing at the Threshold

I don’t usually bring my faith front and center in my blogs, but tonight I feel compelled to. Tomorrow for the Jewish People is the festival of Passover. For those with some connection to the Hebrew Bible, it is the night before the Jews — led by Moses — left Egypt, the land in which […]

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

I want to start with something that does not come naturally to me: a compliment. To myself. I genuinely hate this kind of thing. But on this occasion, I think it is warranted — and I am going to make you read why before I let myself enjoy it. The Backdrop PSP is a beast. […]

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

Living with PSP comes with no shortage of advice, much of it well-meant, much of it contradictory. I’m told to accept it, to fight it, and sometimes to ignore it altogether. What’s harder to admit is that I hear the same competing voices inside my own head. This is my attempt to make sense of […]

Positivity takes sweat and doesn’t come easily — yet it is the way

People assume that optimism is something you either have or don’t — that some of us are simply wired to see the glass as half full while others aren’t. I’m no psychologist, so I can’t settle that debate. But I can tell you this with certainty: positivity is hard work, and that means anyone can […]

West Wing, F1 and a Picture Board

Yesterday I wrote a document I never expected to write, but one I would strongly recommend others consider. Following a number of recent episodes, including one last night, I have been thinking seriously about how I would spend my time if I became unable to communicate, either temporarily or permanently. This is a very real […]

Crowds, lights, noise, and people – a necessary step back. Please don’t take offence

This message is, in many ways, an apology and explanation to many of my friends and community, who are so kind and caring. It is also my attempt to respond as positively and constructively as I can to the reality I am facing. Over the last few days, I’ve noticed a significant decline in my […]

Wow! The Relentless Workload of Being Cared For

It has been one week since we began with a full-time carer. He is great. So far, so good. I had thought I understood what this would mean. I had imagined the help, the support, the practical difference it would make. But there are some things that cannot be understood in advance; they have to […]

A Taste of What May Come

There is always a quiet hope that when changes come, they are temporary. That they will pass. That this is just a moment in time, another point on the roller coaster rather than a new direction altogether. The last few days have felt different. There has been a shift, and it feels profound. It is […]

My New Project: Book Number Four

A week ago, I experienced the best day of my life, my daughter’s wedding (building on the equally wonderful days of my marriage and the birth of my children.) Since then, a great deal has happened. Alongside that joy, I had a mini-stroke and have now started with a carer, something that has already proved […]

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

The song “Help!” by The Beatles has always been one of those songs I never seriously considered the meaning of. Upbeat. Catchy. Almost cheerful. But I listened to it today while having a rest. For the first time I found it incredibly profound. The more I live with PSP, the more those lyrics land differently. […]

A carer at 50 – it is time to embrace yet another new reality

Tomorrow, a carer hopefully starts. He is a seemingly nice guy from the Philippines who has been in the country for nine years. This is a major change, and I cannot put it off any longer. I have noticed how full-time my care has become for my wife. I must break the cycle and give […]

The Mental Battle – Let’s Be Honest with Ourselves

I worry. People worry. I have written about this many times, but as most of us know, there is no one-time fix. It is an everyday challenge. If only life were as simple as that guru video I once shared: a chart asking, “Why worry? If there is or isn’t something you can do about […]

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

I was not going to write about any of this, because of the pure joy of my daughter’s wedding. But the simple truth is that I need this outlet, and it would not feel true to my blog or to the story of PSP as I am living it if I left the rest of […]

The Wedding That Nothing Could Stop

They say it is special to see your children get married. For me, that feels like an understatement. It was pure joy and happiness. I believe I was the happiest person alive yesterday, although my wife, my daughter, my son‑in‑law, his parents, and many others would probably argue for that title and they would be […]

Just a regular dad – tears and all

This week has been nothing like the original plan, and who knows what surprises still lie ahead. Yesterday I shared something deeply difficult, and I was overwhelmed by the positive, supportive, and thankful responses. They made me feel far more at ease, and I received so many warm messages. I am truly grateful. Now I […]

Diapers, Botox, and Red Lines: By far the hardest post to write so far

I have just crossed my own red line, and instead of hiding from it, I am choosing to own it. I’m exposing what to me has been a taboo topic not because I want to but because I feel I have to. This is a place I never wanted to go. It is deeply embarrassing […]

“Sorry Ben – I can’t make out what you are saying.”

The person who said this yesterday meant no harm. I even feel guilty using the quote at all. But it captures something important about what I’m going through. For that, I thank them. I’ve learned that PSP is never the same beast. It shifts hour by hour, influenced heavily by stress. And right now, stress […]

War – No real blog on PSP today

This isn’t a political forum, and it isn’t the place for me to share my political views or to vent about the challenges of living with PSP during a time of war. I write about those things elsewhere. Here, I simply want to pray for the safety of the innocent civilians across the region who […]

Dealing with anger      

I looked back over five years of blog posts and realized I had never written one with the word anger in the title. That probably reflects my generally positive, glass‑half‑full outlook and my desire not to raise the topic. But over the past few days, and especially today, a small but unmistakable dose of anger […]

The Vanilla Index

I’ve developed a new way of measuring my emotional state of being and I’m deciding to call it the Vanilla Index. I decided to chart it today to give myself an overview of how it moves so quickly. Early in the morning, I found myself feel slow, much slower than normal and then enter a […]

Self‑Motivation and Creativity

It struck me this morning how essential these two qualities have become in my life. I looked at my calendar and my inbox and both were empty, completely empty. That is something I am still not used to. In my former life as a client partner and head of consulting at a large global firm, […]

Two Wrongs and One Right

Three months ago, I was asked to write an article for a UK PSP magazine about living with PSP. I hesitated more than once. The idea of committing my thoughts to paper for something that would not be published until months later, while also submitting a draft two months before the deadline, felt almost impossible. […]

PSP at 50 – a complete anomaly!

Statistically, according to all research, being diagnosed with PSP at 49 and having first symptoms at 45 is almost unheard of. It falls somewhere in the 0 to 1 percent range of an already tiny percentage. PSP usually begins after 60, often in the mid 60s or later. I suspect this rarity is one of […]

The sleep difference is simply enormous.

It is hard to describe to anyone how difficult it is to cope with the amount of sleep that I get. I sleep very little, and writing in the middle of the night only reinforces that fact. I came across a study comparing a control population with people who have PSP, and the difference in […]

An app that has changed my writing life

Yesterday for the first time, I (am not proud to say) that I screamed my absolute frustration regarding having to use my manual wheelchair. I have moments of anger where I want to rant, but they are relatively few and far between. It is of course incredibly difficult with PSP, and nothing I write should […]

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

Guilt shows up everywhere when you’re living with PSP, and other serious conditions. It steals energy we desperately need for better, more valuable things. In my view, as a chief ‘guilt’ feeler, anything that helps us shed even a slice of it makes life lighter for everyone involved. I have to admit I’m guilty of […]

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

PSP forces you to make tough choices at high speed and adapt to them just as quickly. I think we are doing this well overall, although far from perfectly. In the space of a year, we have made so many decisions. It is not just the choices themselves, such as skipping our joint 50th birthday […]

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

I promise this is not fictional!!! I wish it were!!! It is just after midnight, and I’m sitting here slightly bruised by the day but also smiling at the absurdity of it. What should have been a quiet, uneventful Tuesday instead became a strange combination of achievement, fear, comedy and reflection. It is hard to […]

Jesse Jackson – May He Rest in Peace

It was very sad on many levels to read of Jesse Jackson’s passing today – even though all we shared was the three letters PSP. I am actually feeling really good at the moment with my daughter’s wedding getting close and with the sense that I am within touching distance of so many things that […]

Same Space, Same Time – 5 km in Jan 2025 and 1,000 Wheelchair Pushes today in <40 mins

That was hard, but hopefully the first of many steps forward, even if they are small ones. A little over a year ago, I was still jogging and running around the kitchen and the lounge at home. It is not something I would recommend unless you have taken leave of your senses. The floor is […]

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

I am competitive, impulsive and I love gadgets. All of that can be a bad combination in the wrong hands, but I think I made a wise decision yesterday. It drove me mad that my watch measured everything in steps. My steps have dropped to almost zero, and seeing that every day was majorly frustrating. […]

PSP Patients: We can hear you…

PSP Patients: We can hear you….I recently came across several scenes on YouTube from the series Zoey’s Extraordinary Playlist, thanks to a PSP blog by Dr. L. Golbe. It is a US NBC production I had not previously heard of, in which the father of the main character has PSP and eventually dies from it. […]

FOTB Update 2 – The father is winning against the patient

I will admit to it. I am excited. Really excited. My daughter is getting married in just 23 days (Please G-d!!!!). And I am happy! I am happy because she is happy and I am happy because I am happy. It is relatively calm as weddings go, I guess and since what seems to be […]

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

This weekend is seen by much of the world as a day where relationships and love abound. My wife and I were due to start a new relationship of sorts on Sunday with our new live-in carer, but sadly, it is not to be. I won’t go into the personal reasons why this match didn’t […]

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

I’ve written so many product reviews over the last year that it’s becoming almost a full-time job. There have been canes, walking sticks, walkers, shower chairs, recliner chairs, pumps, thickeners, and now both electric and manual wheelchairs. I don’t know what’s next… and I can’t say I want to know. This marks my first week […]

OK – Somehow it is!

OK (Okay) – It is such a useful word. For a British person who struggles with expressing feelings, it is the perfect word – an opt out word. It is therefore a surprise that the word first came into use in Boston and not in the UK. You can use it as the question or the […]

Anticipatory Grief – it is real and I feel its effects

Anticipatory grief is a known and natural phenomenon. It affects caregivers, family, friends, and loved ones of people with terminal or progressive illnesses. It has been studied extensively, especially in cancer care and palliative or hospice environments. But I’m also discovering that I feel it as the patient. This is a voice not too often […]

PSP Feels Like Hyper‑Speed Aging

Tonight, I had a lightbulb moment – well one for me anyway. Living with Progressive Supranuclear Palsy (PSP) doesn’t just feel like “getting worse.” It feels, to me, like aging at hyper‑speed – as if someone grabbed the timeline of my body and dragged it forward years at a time. I feel like I’ve been […]

(In)dependence soul searching

Most of us want it, countries celebrate it… independence. As we learn in life there is not really such a thing as 100% independence – we share with others – but there are lines which denote degree of independence and lots of people have a high degree of independence.I have crossed so many and one […]

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

My wife was on a call about carers in the other room while I sat in my chair. I was not feeling inclined or bothered to get up and get in the wheelchair to go the 8 meters to the freezer for ice cream. So I ordered some via Wolt (our local version of Uber […]

FOTB – Father of the Bride

I haven’t wanted to discuss this too openly on my blog for several reasons: “The Evil Eye” (a Jewish way of saying tempting fate), the fact that my goals are hopefully way beyond this wedding and extend to the future celebrations of my family and friends, and because it is not my day, but my […]

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

I’m not entirely sure what technically counts as a panic attack, an anxiety attack, or acute stress. I know I’ve experienced moments of intense stress before – most of us have. Yesterday was one of those moments, and the causes are difficult to untangle. PSP brings both psychological and neurological anxiety (PSP affects The brainstem […]

Positive Attitude doesn’t mean denial, ignoring the pain, or comparing myself to others.

It is always dangerous writing about attitude because it makes you sound pious, pretentious and opens you up to reversing the messages when the going gets tough. Well, the going is tough and I am going to take it on. There are people living in what I call ‘denial’ – an inability or unwillingness to […]

Life with Two Palsy Conditions – Be Careful with the Mouthwash

Two days ago, as I wrote, I had one of the strangest and most emotionally turbulent days of my life. I won’t go back over all of it here  –  I’m only just starting to come down from it  –  but yesterday was very much a “processing” day. The truth is that the emergency itself […]

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

Today was possibly the strangest WIN of my life, but I’ll take it. It stands as absolute proof that everything is relative. It was a crazy day with a great ending… let me explain. The last few days have been terrible emotionally and physically. I’ve been convinced that I’ve taken a massive turn for the […]

Huge internal debate about blogging

This is not other people asking me whether it is the right thing to continue blogging. This is me asking myself as I sit here in real time. I think there comes a point where it may be important to get out while the going is good and spare myself and others a sort of […]

PSP seems to be progressing exponentially…  

What a Difference a Day Makes!

Last night, I wrote what can only be described as a rather gloomy post about my Shabbat: how I had fallen, choked, missed meals, and felt the mental and physical challenge of using the manual wheelchair for the first time. It wasn’t pleasant reading (or writing), and I’m not here to pretend that everything is […]

Very Proud, Very Scared

Today was a special Shabbat, but in many ways, a difficult one. We had three wonderful friends staying with us, which was truly lovely, yet this Shabbat marked some significant changes for me. For the first time, I used a manual wheelchair instead of my electric one—and needed to be pushed. It was not an […]

Wow, this is hard!!

Today my new modern manual wheelchair arrived and I spent most of the day learning to drive it. Honestly, it’s tough. I’ve already noticed four big challenges. The first is the weight. The chair is genuinely lightweight at just 12kg, which is great for lifting into the car. But I forgot that I’m 6ft 5 […]

Wheelchair – You Can Get Used to Anything

I’m writing this partly to help me come to terms with the decision I’ve made in the face of PSP, and honestly, I need to explain it to myself as much as to anyone else. If it feels a little defensive, that’s because it is. So many people have asked me about this, and I […]

Stockpiling Useless Equipment

We are building an incredible collection of short-term used equipment, and at quite an expense, but it is a corralry to the progression of the disease. First came a treadmill when Parkinson’s was still regular – that turned out to be irrelevant. Then came a table tennis table because it’s great for PD. I don’t […]

We all cope differently, and that is ok.

Believe it or not, not everyone is like me, thank G‑d. If they were, the world would be full of impulsive, clumsy control freaks who speak their mind a little too often. Every patient, caregiver and loved one comes from a different place, each with their own way of coping with the ridiculously difficult task […]

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

This post is hard to write, but it feels important. It illustrates the reality of the PSP journey I’m on and hopefully helps others understand what this disease looks like in practice. When I look at the timeline, it’s hard to believe how much has changed in less than a year. I hope 2026 brings […]

Admitting Anxiety, A Healthy Step Forward

This week, I had two important conversations about mental health, and for the first time, I feel ready to share my thoughts. Earlier in the week, I met with an old university friend who is a caregiver for a family member. When we talked about anxiety, he asked how I was coping. He mentioned that […]

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

Nate Bargatze has a very funny sketch about how long the day feels when you wake up at 5:45 a.m. Funny, right? Well, try starting your day at before 1a.m. – not quite so amusing then! If you’re curious, here’s the clip from Nate 👉 https://www.instagram.com/reel/DRM1dfqF_cl/?igsh=MTRkcDU3ZGJ6OTVkdQ== When you’re awake for most of the day, you […]

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

Living with PSP is a rollercoaster, moments of hope colliding with harsh reality. Yesterday was the perfect example of those extremes. The day began well. I played chess and felt sharp, almost like my old self. Then a friend who often shares medical updates I miss (and which, despite this article, I absolutely encourage and […]

Gradual and Sudden

I’ve come to realise, if I didn’t already know, that this disease moves in two ways, both horrible: sudden lurches, like a major choking incident or a fall, and a relentless, creeping progression that feels truly insidious. I’ve written before about a lava flow, and that metaphor feels right again this morning. Over the past […]

Hermit Permit – Finding My Balance

I’ll admit it: I’m a complicated person. Half the time, I’m not even sure what I want and it changes in a split second. I can be a bit of a pain in the proverbial, and not all (and many would say “not any”) of it is down to PSP. I’m restless and bored on […]