Living Life with PSP

Category: English Blog Posts

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 […]

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 […]

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 […]

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 […]

“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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

I Met Him So Long Ago – Why did it hit me so hard?

This morning, something hit me hard, and it probably shouldn’t have. An old client, one of my first in London, sent a message saying he has an incurable disease (not PSP). We haven’t seen each other for 25 years. We exchanged brief hellos on LinkedIn in 2021 and before that in 2007, both times at […]

FAMILY

The Family: Sometimes I live in a dreamworld, telling myself that everyone is okay and all will remain okay for the family. Deep down, I know my wife, my caregiver, is deeply affected. Still, beyond that, there are moments when I think: I am the patient, 50 years old, dealing with this, and it is on […]

Learning balance, third book shelved and 20$ wasted;-)

I’m not talking about one of my main symptoms—balance and movement. I’m talking about life/work balance, which feels just as hard to master. Balance has never been my strong suit. I’ve spent most of my life as a workaholic, and now, as a retired PSP patient, I’m still learning what balance even looks like, even […]

Dead Man Walking – To the Professional

I have never felt more frustrated in my life. Before PSP, I was a partner at a Big 4 consulting firm and Head of Consulting in my country. I wasn’t well known, but I was respected. I had a voice. Now, everything feels different. I’m not talking about other patients or caregivers—they’ve been incredible. I’m […]

I did it – a second book – this one about PSP – Happy New Year

I am delighted to share that I have just completed and received approval for publication of both paperback and Kindle editions of my personal story of living with Progressive Supranuclear Palsy, together with the experiences of a couple of very kind caregivers. I believe this book will be an invaluable guide for anyone touched by […]

PSP Power Downs

I’m going to disappoint my mother-in-law (never a good idea!) because we discussed last night that I’d write about the word “OK,” how we use it to dodge hard conversations, smooth over discomfort, and move on to easier topics. I even planned to dive into its quirky Boston origins in the mid-19th century. (Nerd, I […]

Yes, I Am the Patient – But It’s Not Just About Me

I write these words as therapy, and to share what it feels like to live with PSP. But if I’m honest, it’s easier for me in some ways than it is for many of the people around me. My family, especially those closest to me – and my close friends carry a different burden. They […]

Wow – A Shy Kind of Pride and Gratitude

Today, I want to take a moment to be positive and full of gratitude. I know there are many potential negatives to focus on when writing a PSP blog, and so many of us living with this diagnosis are constantly caught between pain and joy at a holiday time. But for this moment, I am […]

Cognition is a gift I truly appreciate and fear losing

I feel very fortunate that my cognitive skills have stayed strong, at least relative to before, and that I have been able to use them in ways that matter to me. It is something many people take for granted, but I certainly do not. At least, not anymore. My mind now wanders to far and […]

The PSP Shapeshifter: Living with a Shape-Shifting Neurological Condition

When I tore my ACL and had it replaced, or when my appendix nearly ruptured, the pain was intense but simple to understand. There was a clear cause and a clear fix. Progressive Supranuclear Palsy (PSP) is different. It is strange, almost surreal. The brain controls everything, yet with PSP, it does so unpredictably, sometimes […]

2025 – Not the Year I Wanted BUT so much more

As the year draws to a close and social media fills with “2025 in Review” posts, I’ve been reflecting on my own journey. It’s not the year I ever wanted, nor one I would have wished on my family. That goes without saying. I would never have chosen the trauma, pain, fear, and unsettling changes […]

PSP’s Hurricane…

I’ve used the hurricane analogy before, but only with hindsight for mild storms. The last few days feel different. It’s not a Category Five – those are still very very far away, hopefully – but it’s at least a low-level hurricane. I had calm for weeks, the eye of the storm. Some thought what is […]

PSP Symptoms Resurge and Reality Check

In my former career, when I went for promotion to Director in the UK, I spent two days in an assessment centre – role-playing with actors, being videoed, and observed constantly. The feedback was clear: I was seen as a strong candidate for the future. But there was one major weakness – they said I’d […]

Lull Over & Book Published – Time to Practice What I Preach

The lull is over, and my book is finally published – time to practice what I preach. Last week, I wrote about being on a plateau, but during that time, I managed to write an entire book in just one week. Yesterday, it was published, and today, I’m launching it. I was driven by a […]

From F9 to 🔄: My Battle with Impatience in a PSP World

I’ve always been the person who hits refresh. Waiting for a payment to clear? Refresh. Waiting for an email? Refresh. But PSP, and the dopamine-related drugs I am on, have made it so much worse. Now, as I wait to hear if my book is accepted by KDP, I’ve checked at least a hundred times. […]

A Fall, A Wake-Up Call, and The “Publish” Button

I’ve often been called impulsive and stubborn – and maybe that’s true. But last Friday, a nasty fall gave me the kick I needed to stop hesitating and finally hit the button to publish my book. It is now in final review, hopefully soon to pass and go live. I am proud of it. But […]

Yes – A Book in a night – A teaser

I haven’t posted in the last few days because of a moment that hit at 11pm three nights ago. Having considered a book for months, I’d drawn a complete blank. Material hasn’t been the issue (as you probably know), but I hadn’t found the right angle to tell my story – without letting PSP steal […]

 Ice Cream: The Sublime and the Ridiculous

Yes – Ice Cream. And before you ask: Vanilla. Living with Progressive Supranuclear Palsy (PSP) transforms something as simple as eating into a high-stakes balancing act. PSP is a rare neurological condition that affects movement, vision, balance, and – most critically for me right now – swallowing. Add to that the dopamine-related medications (which I […]

More in Common Than We Realize: Shared Lessons from Cancer, ALS, PSP, and Far too many other Cruel Diseases to name

“Everything can be taken from a person but one thing: the last of the human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way.”  –  Viktor Frankl Introduction  While fundraising platforms, medical professionals, and pharmaceutical companies often highlight the differences between disease “brands,” for patients and caregivers, […]

Plateaus – A Little Disorientating, Highly Welcome, and Caution Urged

This isn’t a medical blog – it’s a patient’s perspective. Keep that in mind. I’ve seen other patients mention this, and honestly, as I write this, I feel like I’m on one of these plateaus. As much as I don’t want to tempt fate, I committed to give a patient’s view and these plateau’s in […]

8 hours – “What on earth happened”

I can hardly believe it myself – my Garmin flashed an 80 Sleep Score with the words: “You had a long, deep sleep. Sleep like this is critical for boosting your immune system and repairing your body.” Honestly, I expected it to say: “What on earth happened?” or “Have you sold me to someone else […]

PSP Really Is Tough- and I Got Overconfident

It may seem only a few hours since I last blogged, but it has been a tough one. I’ve realized that this is not quite as easy as I had thought. It’s a hard situation, but writing has helped- and I can’t cut that off now. I admit to a serious wobble. To be honest, […]

Taking a Breather: My Journey with PSP and Blogging

PSP is hard – genuinely hard. I often wonder whether blogging helps or hinders. I try to stay positive, but living with PSP is challenging in ways that are hard to put into words. Knowing what lies ahead, knowing your family shares the weight of this journey, and feeling the changes in yourself – both […]

“Fall Seven Times and Stand Up Eight”

I came across two motivational quotes this morning that made me laugh out loud because of how relevant they feel to life with PSP – one in the title above, which is a famous Japanese proverb about resilience and perseverance, and one below by Gandhi: “Strength does not come from physical capacity. It comes from […]

Time – Navigating Time’s Paradox with PSP

The expression goes that time is relative. I sort of understood it but totally get it now. A PSP charity asked me if I’d like to write an article for a quarterly edition of a magazine they have. When I asked when I would have to submit it, I was told two months or so […]

Regional Sales of Yogurt and Eggs Up by 10%

Local supermarkets may not be tracking trends closely, but they’ve surely noticed an unexpected spike in yogurt and egg sales. Cows and chickens are probably working overtime, and soon someone will be sent to investigate. You might assume this surge is due to a population shift or a major marketing campaign. Sadly, it’s not. The […]

Proof That I Can Win

Yesterday was cast iron, gold-plated proof that I can win my battle with PSP. I know that sounds outrageous, but hear me out. The physical battle against PSP I am almost certain to lose – it will almost certainly claim me as a cruel victim. But last night proved I can win when I measure […]

PSP, Thanksgiving and Simple Prayer of Thanks

I woke up this morning at a relatively regular 1:41am and immediately two thoughts – completely intertwined – went through my head. A simple prayer of thanks I say when I wake and seeing a reminder that today is Thanksgiving in the US. The Simple Prayer As I’ve mentioned before, I am a person of […]

The Chair Has Arrived

I am starting to feel like a television shopping channel. I keep trying out and reviewing new products that have a real impact on my life. It seems that every week there is a new episode featuring a different disability aid as my rapid sweep through product lines continues with PSP. What most people buy […]

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

👉 LINK TO BOOKLET  Below is an extract from “Navigating a Terminal Illness – A Patient’s view for Caregivers” with the introduction and reference to the individual blog posts   Introduction: We’re in this together, terminal illness impacts both of us in profound and countless ways. I experience it as the patient; you face it […]

Patient Dignity: Why It Matters and How to Protect It

As someone living with a terminal illness, I have come to realize that dignity is not a minor detail – it is central to how we experience care and life’s final chapter. For me, a mix of British prudishness, a desire for independence, a lifelong sense of self-respect (and no doubt some psychological hang ups) […]

Holding On to What Counts

I am not a terribly nostalgic person – and that’s just as well, because things change at light speed when you’re living with PSP. Over the last few months, I’ve given up my career, my car, and the ability to drive. I’ve lost the ability to walk more than a few steps with a walker. […]

Beyond PSP: Lessons from an Unchosen Journey

While my journey is defined by Progressive Supranuclear Palsy (PSP), a rare and challenging condition, the lessons I’m learning extend far beyond it. Some have noted that the insights gleaned from navigating this path – totally unwanted but challenge accepted – resonate universally. I’m not an arrogant person, at least I hope I am not, […]

PSP: Understanding Symptoms and Stages

Progressive Supranuclear Palsy (PSP) is a rare and complex condition that affects movement, vision, and behavior. In this post, I share a clear overview of the key symptoms and stages of PSP – alongside my personal perspective – to help patients, caregivers, and readers better understand what this journey looks like. Why I’m Writing This […]

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

In PSP support groups, one question pops up daily: “What do I need to know?” The answers are empathetic, but one action stands out as non-negotiable: end-of-life planning. Do it early, and the relief starts immediately. Planning for the end feels surreal—especially at 50. That absurdity often sparks dry humor, but here’s the truth: you […]

Perspective – Genuinely Another Good Week

You might find this hard to believe if you’ve read some of my previous posts over the last days, but as I look back, this past week has truly been a good one. For a moment, let’s set PSP aside. As a person, it was a very good week – and I’m deeply grateful for […]

The Eerie Silence of PSP: Navigating a Journey Without Treatment

This may sound stark, but my goal is to pull back the curtain just a little on life with Progressive Supranuclear Palsy (PSP), a rare neurodegenerative disease that steals movement, balance, and vision with relentless precision. What I want to share is not just the medical facts, but the feeling – the “eerie silence” that […]

Audio Enabled – Why I Acted Immediately

Today, I received an unexpected message from a reader: ‘Can you record the blog as I have double vision from PSP?’ For a moment, I was taken aback. Then, true to form, I swung into action. Within an hour, I had enabled audio recording on my website and now this blog is being written. Why […]

Squeezing the Last Drop from End of the Toothpaste

Squeezing the Last Drop from End of the Toothpaste – I woke up with this toothpaste image in my mind – I can’t say why. Like the shower chair yesterday, it’s another absurdity of life. Here I am at 4 a.m., typing a blog comparing my life to a tube of toothpaste. You can laugh or cry. I choose to laugh.

Greatest Inventions – The Shower Chair

Have you ever paused to marvel at the inventions that quietly transformed everyday life? Think about wheeled suitcases. Our kids have no clue what it was like to drag heavy cases and sports bags through airports until someone had the genius idea to add wheels. It wasn’t cutting-edge tech – but it was life-changing. The […]

Reflux – Welcome to the Party

Reflux showed up uninvited, and it is making life miserable. I did not expect this. Just a couple of weeks ago, I sat with a swallow expert and confidently said I had never had a reflux problem, at least not that I was aware of. Well, reality has arrived, and it is awful. At first, […]

Fighting my demons – And Winning (Just) 

After the Jewish Sabbath ended – during which I do not use my telephone or PC – I spent some time catching up reading updates on a few PSP Facebook support groups. One anonymous post was so raw and emotional it really hit me. It was from a daughter about her father who is getting […]

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

It has not been an easy week for many reasons – PSP and non-PSP – but this afternoon reminded me why it is all worth it and why, despite the challenges, life is simply so special. And all it took was a bowl of meat (bolognese) sauce and a guitar. My diet has been a […]

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

This is a title I never anticipated writing but that seems true most days these days. When it was first suggested renovating the downstairs, I resisted – not just practically, but mentally. Deep down, I didn’t want to admit I needed it. Accepting that change felt like acknowledging a new stage in my condition, and […]

5 Goals/Shifting tactics

It’s 2:30 a.m., and I find myself deep in thought after reading a blog by another PSP patient – someone slightly ahead of me in this journey. He wrote about life with a PEG feeding tube. Two weeks ago, that idea wasn’t even on my radar. A week ago, my neurologist suggested it. I said […]

Enough with PSP… Other People Have Lives Too

Living with PSP can shrink your world—and everyone else’s—until it feels like the condition is the center of gravity. I’ve noticed this in myself, and honestly, it worries me. You start writing a blog, sharing your story, and before long, everything revolves around you. Even hitting “publish” on this post feels like feeding that cycle. […]

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

Am I being truthful as a blogger? Am I being authentic or is the positivity/humor (or attempted humor) designed as a way of papering over the cracks as the PSP train rolls. I know it is a bit of a defensive question but it is a real one I have asked myself this and I […]

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

I was diagnosed with PSP (Progressive Supranuclear Palsy) in early 2025, but it could have been much earlier. Like many neurodegenerative diseases – PD, ALS, Alzheimer’s – it’s never 100% certain until autopsy. That uncertainty gave me three to five years of ignorant bliss, for which I’m grateful, but it’s terrible for the science of […]

Time to decide what matters…

Life used to feel like a luxury liner – so many choices, so many options, so many things to do. Sadly, for much of that time, I wasn’t looking at the beautiful sights but had my nose buried in a computer or a phone. That chapter is behind me now. Thanks to PSP. I raised […]

“No Way”: The Tiny Spoon Thickener Catastrophe :-)

Imagine the scene… my wife, mother, daughter, and I are all staring at this glass of water, thinking the same thing: “No way.” It looked like a scene from a horror movie. We were having dinner – the other three were eating adult plates of salmon, mash and vegetables, while I had the soft white […]

Hope

Today has been a truly uplifting one, and I wanted to share it. No – there is no cure or even treatment. No – the basic realities of PSP remain unchanged, and the challenges are immense. No – I am still the same me, a choking attack away from a feeding tube, but I just […]

On Behalf of “They”

What happens when the person you love slowly becomes someone you barely recognize—and sometimes even a “They”? That question haunts me more than anything else about PSP. I think awareness of the issue may offer some help or at least preparation to some, myself included. Being part of this community has taught me something important: […]

Adaptation

We really do have the capacity to deal with enormous change

Slow Down!!!

I’ve been rushing all my life, and right now, that habit is probably my biggest risk. I was the person who had to arrive at meetings early because I dreaded being late. The one who reached the airport before check-in even opened, fearing traffic or long queues. I’d get to the office at 5:30 a.m. […]

The Sad, Beautiful Yet Quiet and Forgotten Voice of PSP

Firstly it is usually a good sign selfishly when I write about a topic broader than my choking, falling etc – it means I am actually in a good place and I feel pretty strong this morning – so thanks to Him above and the sleeping pill for that. I have wanted to raise my […]

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

Apathy seems to be a symptom discussed by caregivers more than most, and they often talk about the loneliness they feel as a result. Yet, on first glance, I didn’t believe this could be a real symptom. It sounded made up, but as I reflect on specific instances and on my general feeling, I can […]

The PSP Obstacle Course

My awesome physios, who will remain anonymous, probably knew I was going to write about this today, and I couldn’t resist in the end because I think it shows an insight into where I am holding with PSP. It’s actually very amusing, quite positive, and yet ultimately tragic. Imagine the scene: two physios (one gratefully […]

PSP: Loss of Control

Many of us, though not all, are to a degree controlling in our lives. Sometimes this tendency is beneficial, and sometimes detrimental; it’s a common feature of many personality types. I admit, I am a control freak. Friends, family, and members of the various teams I have led or worked with would tell you that’s […]

ONE SPLIT SECOND – A STRANGE MOMENT

It was probably much less than a second, maybe a nanosecond, or whatever the right term is -but it was crystal clear. Don’t worry, I didn’t see the Gates of anything or flames or tunnels. It wasn’t that kind of moment. But it was life changing. For days, a specific thought has been circling in […]

PSP: Unsung Champions

[Introductory Note: I’m sharing this because I feel a surge of positivity. Positivity is relative, I know. Some might find this tough to read, but it’s important for those around PSP to acknowledge the realities faced by those living with disease – and related conditions – and to recognize the remarkable strength I see in […]

Quality of Life – I Challenge us to Look at more Positively

Quality of Life (QoL) is a term much used in the world of PSP, but I think many researchers, medical experts, and those involved with PSP frame it too negatively. I’m going to challenge that thinking. In a disease with no cure or treatment, QoL is the only real focus. Other illnesses chase treatment, rehab, […]

Top Five PSP changes to have come from my Diagnosis?

What are the Top Five PSP changes to have come from my Diagnosis? What are the Top Five PSP changes to have come from my Diagnosis? I thought about this question a few moments ago as I sit here at 2 a.m., unable to sleep, and oddly, the list is completely different from what I […]

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

Scrabble, crossword, Bananagram experts and those in the medical worls (or maybe lots of people, just not me) probably know this word, I didn’t. I’ve been noticing a new characteristic of late which I simply abhor, and it turns out it’s called lability. I found it in a research report yesterday, and it described exactly […]

The North Star and the Fog

Being positive is neither automatic nor easy, it’s a choice I have to make every day. Some people might naturally lean toward optimism or pessimism. I’m definitely the former. But that doesn’t mean positivity comes easily. It takes real work. This blog is one of the ways I keep swimming against the tide. Lately, PSP […]

PSP Report Card: Still Here, Still Laughing

Six months ago, I was officially diagnosed with “what appears to be” Progressive Supranuclear Palsy (PSP), a rare and relentless neurological condition. While the disease has progressed (and now the “what appears to be” has disappeared, so has something else: my perspective. This is my take on where I am – and as a spoiler […]

2 ½ falls, impulsiveness and a potential Whatsapp Group

Today I had 2½  falls – the “½” was more of a slump than a full-on crash. Afterward, my son and I had a debate about why, thank G‑d, I’ve never broken anything. I credit my daily yoga and my finely honed falling technique. Honestly, I believe that if I were still in the shape […]

Faith Is a Massive Factor for Me

One of the PSP-related charities wouldn’t let me write a post about faith. The benefit of having my own blog is that I can actually write what I like, so I figured I can’t leave this in the background any longer. I’m not preaching a particular faith to anyone – that’s not my place – […]

The Eyes Have It

In the symptom race that is PSP, my eyes are pulling ahead of balance and slowness. In fact, they’ve become a real concern. I remember it as clear as day, funny and shocking at the same time. When I was first diagnosed with “Parkinsonism” in 2020, I went to the eye clinic for a half-day […]

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

The fight with negative emotions is constant. Yes, I’m a positive person, but I’m no saint. I’m optimistic, but I’m human. Most days are good, but I have dark moments too. I don’t enjoy feeling resentment, anger, frustration, or rage. But occasionally, I still find myself feeling it. And when those moments come, especially around […]

Less Pain Than Expected – And Yoga Is Why

The Pain from PSP  – not anywhere near as bad as I thought, but for a reason. I must say that many people with PD/PSP are ravaged with pain and therefore this is written about my experience ONLY and I don’t mean to disrespect anyone! Like many people, I’m not a fan of pain, and […]

Goals: Aim High, Adapt Well

Setting Tough/Doable and the Right Goals I recently set myself three goals. At first glance, I scored 1 out of 3. But on reflection and after some recovery work we did, I give myself a score of 2.5 out of 3. More importantly, these goals gave me the value of aiming high, pushing myself, and […]

Why I Keep Pushing Myself

I will keep fighting and pushing myself. Partly because I’m stubborn, unwilling to give in, and partly because I genuinely believe it’s the best way forward. This Jewish New Year was a powerful example. As I write this, my shoulder is in significant pain, but it was absolutely worth it. I was asked, as I […]

Thank You, Movers and Shakers – Understanding Parkinsonism

When I first heard the term Parkinsonism, I was confused, and honestly, frustrated. The doctors told me I likely had a form of it, but I didn’t know what that meant or what to do with it. It sounded like Parkinson’s Disease… but not quite. It felt like I’d been handed a vague, second-hand diagnosis, […]

A Back Seat

I decided not to post for a few days, hoping to do what I truly wish for: to step out of the spotlight and simply enjoy the journey. Then I realized that most readers don’t actually know me personally, so I thought I’d share a short message. My daughter just got engaged, and I am […]

Stubborn as a Mule?

Yes, I’m stubborn, in more ways than I can count. People offer help all the time: getting up from a chair, walking, climbing stairs, running errands, even buying things I hesitate to spend money on. And I refuse. I insist on doing things my way, making my own decisions, staying in control. That’s me. I […]

12 Things I Learned as a New Electric Wheelchair User

A slightly irreverent guide to freedom, bumps, and unexpected coolness that comes with being a first time wheelchair user When you’re a teenager learning to drive, you get lessons, a theory test, and a whole lot of rules before you’re let loose on the roads. Thankfully, there’s no such thing for new electric wheelchair users […]

For Pity’s Sake

A personal reflection on life with PSP — not about pity, but about resilience, humor, and holding onto who you are. Plus, a mad ride with my 3-year-old nephew that reminded me joy still wins. 💙

“For pity’s sake, please hurry up.” It’s a phrase I used to say often, a reflection of my impatience with waiting. But now, the word pity carries a very different weight for me as I navigate life with PSP. Pity is something I’ve feared deeply. I don’t want it. I don’t justify it. My concern […]

This Week, PSP Lost

There’s no treatment or cure for PSP – but that doesn’t mean you lose. This week was a clear win for me. I’ve been reflecting on the past few days. PSP showed up in many ways – eye issues, pain, falling – but it didn’t define my week. If I had to guess, it took […]

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

In Harry Potter (yes – I am a big fan), one of the most intriguing elements is the name you can’t mention – “He Who Must Not Be Named.” In my current life, there’s a topic I’ve come to call “That Which Must Not Be Named.” Like a shadow that once loomed large, it’s a […]

Halved in Height but Feeling Taller Than Ever – Resilience

So much has changed physically. Sitting in a wheelchair has transformed me from the tallest person in the room to the shortest. Yet emotionally, I don’t feel any less tall. I am learning to be more resilient, roll with the punches and actually grow (not physically :-)) Yes, I can’t walk properly. I rely on […]

Happiness is a …

Brits my age will remember an old advert by a cigar company called Hamlet — “Happiness is a cigar called Hamlet.” Here’s the original advert for those who want a nostalgic smile: 📺 Hamlet Cigar Ad   Today, I had a Hamlet moment. Buddy, our Maltese dog, and I went for a long run/jog in the sun this […]

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

I have been fighting it for weeks – a combination of playing for time, debating the plans, and frustration at the cost… basically, anything to delay the inevitable. My wife is a rock-star, and I’ve been more resistant than I’d like to admit as we’ve had this debate. She has listened patiently and let me […]

Kindness, Wheelchairs, and Owning My Mistakes

Life has a way of teaching you to appreciate the small moments that carry immense weight. Lately, I’ve been overwhelmed—in the best way—by the kindness of others. From practical favors to heartfelt gestures, these “little things” have made a world of difference in my life with PSP. One unexpected source of joy? My wheelchairs. Yes, […]

PSP (PD/xyz) in context

PSP

No one can pretend that PSP is a friend. It’s not nice to watch yourself or a loved one decline at a horrific speed to a condition that, in its final stages, combines the worst of Parkinson’s and Alzheimer’s. I certainly don’t face it with joy, and it’s far from comedic – as the decline […]

The Messy Home and New Wheel Park

In the recent family survey we conducted, I was unanimously ranked dead last in household tidiness, even behind our dog, Buddy. I’m not proud of this at all. I genuinely have a weakness when it comes to being tidy. My shoes seem to migrate to the exact wrong spot, despite my wife having created numerous […]

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

When I was diagnosed with Progressive Supranuclear Palsy (PSP), I was completely at a loss. Googling it was a mistake, the prognosis was grim, the stories were heartbreaking, and the tone was overwhelmingly bleak. Parkinson’s Disease (PD) didn’t feel much better. Neither diagnosis felt like a gift. And to be honest, the speed of progression […]

My near purchase of a Scooter :-) A great but chaotic day

Some days are just… chaotic. Yesterday was one of them. It was a day of impulsive decisions, quick reversals, and a whole lot of laughter. It was also a reminder of living with Progressive Supranuclear Palsy (PSP), a truly and rapidly progressing condition that challenges my balance and movement. But even with a serious diagnosis, […]

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

That I’m writing this with a positive tone says everything about my first day using a wheelchair, and the fact it was probably overdue. But It wasn’t easy. I chose to rent one in the morning, it felt better than buying outright, and then went to a wedding using it. I nearly backed out twice […]

Shopping for Wheels: Choosing the Right Mobility Aid :-)

Before buying a car (set of wheels :-)), most of us dive into research, looking for speed, style, versatility, looks, that elusive X factor, and of course, price, deals, and features. We each have our individual systems. I’ve always loved speed, but my condition has forced me to slow down. Still, I half-agree with Jeremy […]

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

I have been trying to find the words that sum up how I feel, and this just came to me. It is honestly how I feel as I write this, and I believe it is OK and ultimately a very positive state of mind. I see the encroaching of PSP, I feel it, and as […]

All Change… Mind the Gap… All Aboard

“All Change… Mind the Gap… All Aboard” – As someone who spent years commuting on the London Underground – The Tube – these expressions were part of my daily life. I never imagined I’d use them to describe how I feel about living with PSP. The last 48 hours have been completely ordinary, with no […]

Misdiagnosis – The Emotional Cost Biomarkers Could Spare

Bio-markers for PSP

From theoretical science to the real world of emotion and consequences, misdiagnosis in neurodegenerative diseases like Progressive Supranuclear Palsy (PSP) carries a heavy toll. Yesterday, I shared a scientific perspective on biomarkers. Today, I’m speaking from the heart about my journey and the urgent need for change. The Rollercoaster of Misdiagnosis I often make it […]

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

Bio-markers for PSP

Last Friday, I posted an overview of my deep dive into my a €35 journey through a research paper on  Parkinson’s Disease (PD) and Progressive Supranuclear Palsy-Parkinsonism (PSP-P). I felt proud after hours of reading, AI cross-checks, and some Excel wizardry. Then came an email from a professor in Tel Aviv. He liked the post […]

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

I’m not a scientist, a neurologist, or a diagnostic expert. I’m a patient, someone living through the confusing transition from a diagnosis of Parkinson’s disease (PD) to a diagnosis of Progressive Supranuclear Palsy-Parkinsonism (PSP-P). And to be honest, it’s been disorienting, albeit never a dull moment 🙂 It’s been a journey filled with retiring, giving […]

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

I am probably the only person not posting about the weather (yes I am a Brit and am pre-programmed to discuss it at every occasion and yes it is 38 degrees C while I am writing this but I am barely outside anymore so it has had virtually no impact on me – as long […]

5K → Walker → Wheelchair in 190 Days

The First ‘P’ in PSP Stands for Progressive: 5K → Walker → Wheelchair in 190 Days As I write this, I remain positive about life, despite what I’m about to share. I truly enjoyed my weekend with my daughter. My nature is optimistic—but I can’t pretend the pace of my PSP journey isn’t frightening. It’s […]

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

I’ve changed in so many ways! 😲 I just realized something I’d never have considered before. 🧠 This afternoon, I sat down to watch some sports 📺, and found myself happily choosing the Chess eSports final (Magnus Carlsen 🆚 Alireza Firouzja) over Bayern Munich vs. Tottenham! ⚽ Some might say, “How the mighty have fallen” […]

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

Yalla!! This article is about stopping the self pity. I was going to write about how I took a walk this morning in the cool reflecting on the fact I wasn’t in France. About missing the joint 50th birthday cruise with my wife. About the bittersweet feeling of watching her and our daughter (a last-minute […]

What Positivity Means to Me

My goals have changed - what is Victory

I’ve always considered myself a positive person. But let’s be clear—I’m not the kind of person bouncing off the walls, grinning ear to ear, shouting my love for life from the rooftops. That’s not me. And frankly, given my circumstances, if I were doing that, something would be seriously wrong. So what does positivity mean to […]

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

Many of you have asked about my experience with the Vyalev/Produodopa Pump, which I’ve written about often. The past nine months with the Pump have been a whirlwind—emotional, intense, and at times, hopeful. I fell in love with it. I became an early and passionate advocate, even helping to build a vibrant WhatsApp community that […]

From a Prison to an Ark

From a Prison to an Ark – A good friend visited me recently—someone whose advice has been a lifeline during this period. We were talking about how much time I now spend at home. I admitted that, surprisingly, I’ve grown to like aspects of it. Despite the boredom and restlessness that sometimes creep in, I’ve […]

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

It’s so easy to sink into a depressive state given the circumstances—but I simply won’t let myself go there. It’s tempting to take every setback to heart and spiral downward. But I choose not to—or at least, I’m trying not to. As Monty Python famously put it: “Always look on the bright side of life.” […]

When Is It Time to Make the Video?

My goals have changed - what is Victory

Many people have suggested that I record a video message for my future grandchildren—those I may never meet, or who may only know me as a shell of myself, ravaged by PSP. It’s one of those things people advise you to do. And it was the last item on my list. A will. An end-of-life […]

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

I’ve gone back and forth about sharing this (more than normal :-)), but writing continues to help me think things through and find some peace—especially now. It also helps others (I think!).  Yesterday, I made one of the hardest decisions of my life. Not about work, a relationship, or moving somewhere new—but something very personal. […]

“You doing ok?” – Three Possible Answers

“Are you ok” – I get asked this question a lot and I am genuinely grateful that people check in. I make huge efforts to approach life with a glass half full attitude, and that’s my goal, but that doesn’t mean it isn’t hard. I think it’s important people see the window from both perspectives—the […]

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

I already know the answer so many people will give me, and it is: “Try Swimming.” Please don’t. I truly don’t enjoy swimming—although I can swim—and I’m not a fan of water-based activities. I know that won’t stop the pro-water squad, but that is my personal request. 🙂 The challenge of retirement—and the transition from […]

Now it’s you and me PSP

I have retired from the career that has been much of my focus for a very very long time. I have done so to focus on you PSP. Here are the rules. The focus is absolutely and relentlessly to keep you at bay, to stop, delay, frustrate and slow your march and your progress to […]

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

Courage to Continue

It seems to be working—and the doctors seem to be right. Despite a war and several other stressful events, the simple truth is that stopping work, as much as I didn’t want to, is having a significant impact on my health. This isn’t a battle where you achieve a huge turnaround and declare victory—sadly, PSP […]

An indulgance

The simple fact is that we are at war. This is not a political statement—just reality. I’m effectively stuck at home because I need to stay close to the safe room. With my balance and walking difficulties, I must remain nearby at all times. It feels incredibly indulgent to write about PSP right now, when […]

You’ll never walk alone

It’s probably the most iconic song in sport. I’m not a Liverpool fan, but whenever I hear You’ll Never Walk Alone, it stirs something deep inside me. Recently, in three separate conversations, people have mentioned the song to me—not just as a tune, but as a motto. A reminder. And it holds a very special […]

Chocolate – yes I did….🍫🍫🍫🍫

When I set up this blog, I did it with the express intention of not mentioning politics—and I won’t. But I can’t hide the fact that our country is at war. My son is fighting on the front line, and we are sleeping in a safe room. I offer no political view—that’s for other forums—but […]

Carlos Alcaraz – More Than Tennis: He Never Gives Up

From the first time I saw Carlos Alcaraz win Wimbledon, he’s done it again and again. I simply love him. He always leaves me with a smile—and with hope. Yesterday he did it again (see video for those who have not seen it) Those who know tennis will understand. It’s a game of total individual […]

Patient and Caregiver – A Crucial Team

In my lifetime, I’ve seen both the difficulty and the profound beauty of the Patient-Caregiver relationship. My mother was the primary caregiver for my grandmother, and their bond lasted decades. My grandmother—may she rest in peace—was a wonderful, gifted, high-octane, impulsive, and stubborn woman. When she was well, I used to stay with her at […]

Mentoring and Keeping My Brain Active

As I transition into “retirement,” I’m becoming increasingly aware of how important it is to keep my brain active and properly stimulated. Exercising it is essential—and for me, chess and writing go a long way. Hence Mentoring. There are many reasons I need to step away from work: the stress, the intense adrenaline, and the […]

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

One of the things I’ve been reflecting on in the last few hours is gratitude. In this post, I’m going to do something I’ve never done before, something I don’t think many people get the opportunity to do. I am going to say Thank You. I don’t mean this in any kind of morbid way […]

Disabled… and Finding Meaning in the Journey

Fight

Today, I realized something profound—something I’ve never fully admitted to myself before: I am Disabled. It’s not that I didn’t know I’ve “had a disability” for some time. But there’s a difference, at least to me, between acknowledging a condition and embracing that capital-D word. It’s not a judgment, not a badge of defeat or […]

Adapting to Change: Strength in the Face of PSP

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

One of the few strengths I have is a relatively strong tolerance for change and an ability to adapt to new situations. I’ve spent my career working in the fast-moving and ever-changing world of Mergers and Acquisitions, where the ability to ‘move on’ and transition from one thing to the next is essential. There are […]

Adapting to Retirement: Embracing the Siesta

I was speaking with an occupational therapist today about the challenge I’m facing as I transition into retirement: how to fill my time. I’ve been feeling increasingly bored, frustrated, and agitated as the day goes on, and I know I need to do something about it. Hypothesis – Try the Siesta! We went over all […]

Why me? A new and purposeful beginning

Courage to Continue

This has been a big week. I’ve just returned from Japan, where I had the most extraordinary time. Then, I was hit with a wake-up call at the eye clinic—a stark reminder of the progression of my condition. Even now, I’m finding it hard to focus on the screen as I type. From then we […]

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

For months, I’ve struggled with my eyes, and although it is Sad to Be Right, stopping driving was absolutely right (and overdue). Other people should trust their instincts too, both with driving and in potentially avoiding unnecessary delay in diagnosis and treatment of health considerations. I’ve dealt with blurred vision, occasional double vision, and eyes […]

Japan – Why I Was Spellbound

Japan – Why I Was Spellbound Written on the journey back Introduction I wouldn’t normally advise taking an impulsive, expensive, and risky trip to Japan as a way of shaking up your daily routine—but in this case, it was a massive win for me and a memory I’ll keep for life. Two months ago, the […]

Japan – blog 2

I will keep this pretty short. It is an amazing country, seeing my son is fantastic, the travel was tough but absolutely fine and the airlines/airports were excellent. Seeing my son Magical! Simple as! Japan Fascinating. So far we have seen Hiroshima and an island next to it. It is the culture that fascinates. Quiet, […]

No “Hail Mary” this time

I haven’t blogged about this topic because I felt it was inappropriate until I knew more. For those following my Japan blog, that will come later, but the real world marches on. A couple of months ago, I had a conversation with a senior professor in the UK. He graciously gave his time and asked […]

Japan with the Pump, PSP and Walker – Blog 1

Japan with a terminal illness, a pump and a walker 🙂  A daring adventure or a calculated risk? Am I about to make a regrettable mistake or create one of the most memorable moments of my life? Only time will tell – Hopefully the second as long as I am ultra-careful. Japan is one of […]

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

Life Begins at Fifty…I thought this was a joke until today. I will admit it: I have been coping really badly for the last few weeks with the huge changes in my life. Going from 100 to 0 has been incredibly hard, and it was only today that I gained clarity as I go into […]

The Waiting Game – I Would Make the Worst Hunter

I admit it – I’m terrible at waiting. I’m not sure I even know how, in any meaningful way. I have an overwhelming urge to get things done and to do them as quickly as possible. This approach is often counterintuitive. Sometimes, I’ll ignore an issue because it’s not on my radar, and then – bam […]

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

I want to thank my friends on Facebook and HealthUnlocked.com’s Parkinson’s and PSP groups for reinforcing my decision to refuse to be taken in by emotional blackmail and a pyramid scheme. I’ve always understood how people can become susceptible to these money-making schemes, but it very nearly became me, and I’m furious that I was […]

Finding My Meaning: Family, Country, and Faith

I have tried so hard to keep politics, faith, and religion far from this blog site out of respect for those with different views. I do so by channeling my thoughts on those topics via different outlets and forms of media. I’ve realized, however, that I’m not fully sharing my identity and purpose with myself […]

I made it! The long/short walk home

I put my mind to it and made it. Why was it so hard? I walked there okay-ish (really, I slid there, not able to lift my feet), but it was relatively okay. I don’t know! Balance, slow gait, and vertical eye palsy, which I also have, are hallmarks of PSP, so I shouldn’t be […]

Dominoes and Chess

Dominoes – A positive look at the Domino effect Sadly, all involved in dealing with health issues (or other trauma/tragedy) know the domino effect on people related to the patient – those in the family, at work, friends, health workers. The patient (or person with the health issues as some prefer) may often be ‘Ground […]

A personal story from Cure PSP – The Gervais Family

A number of people have asked me what PSP is or isn’t, and I have about as much information as anyone else with Google and Gen AI. I just watched this video made by Cure PSP about a lovely Canadian family, and in particular the husband/father/grandfather Pierre and his wife Jocelyne. Pierre was initially diagnosed […]

I am doing my bit – sleep up and stress down

A short and basically positive update on the last 4 weeks – stress down, sleep up, body battery up! Garmin is not the be-all of science, but it is interesting. I decided this morning to look at the data from my Garmin watch over the last month*. You won’t need to be a statistician to […]

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

Call to action for me!!!!!! It has taken me far too long to fully grasp a major symptom that I am struggling to deal with and that has, without me fully realizing it, changed relationships and brought me to love writing all the more. It has been raised a couple of times by people and […]

Big and Bold are Beautiful

Parkinson’s and Its Related Diseases: A Disease of ‘Small’. Movement reduces, muscles tighten, face grows less animated, speech is dulled, empathy is reduced, handwriting gets tiny – I could go on. As I walk along the streets, much of the time I remember my Grandma and other adults constantly telling me not to scuff my […]

Hope and Optimism – Statistics are LOGICALLY not relevant for me

So many people have said to me that I shouldn’t believe the statistics regarding PSP. It is normally a statement made based on faith and emotion. I, of course, understand this, but as a CPA and a logical thinker, it has bothered me. I have now realized that I can also logically refute the statistics, […]

Hope – the clear winner but not by a Knock Out

Fight

A positive attitude in difficult circumstances is not a given and for many people it is virtually impossible. I have just witnessed a true ‘live’ internal struggle for 90 minutes between the forces in me that want me to mope and feel sorry for myself and those who want me to pick myself up and […]

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

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

I went for an assessment to the Sheba Neurological Rehabilitation unit this morning and was evaluated by their panel. I was last there, in the same unit, at the end of my rehab in 2023, and the difference was staggering. Of course the team as always was awesome! Firstly, I arrived there last time on […]

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

As the title says, “Not quite Jackie Chan but”… my former personal trainer would be proud of me. Yesterday was one of the less good days, but an amazing silver lining emerged, which I think is really important to raise as an idea for people and one I need to thank my former PT for. […]

Night and Day – shuffle versus 5k

Night and Day… Literally… How is it possible that at night, walking home from a celebration party I left early because I felt weak (sorry folks!), I had to call my daughter to help me walk home because I could literally only shuffle with my feet scraping the ground and walk with the tiniest steps, […]

Out of crisis and back to LIFE

פרקינסון – הכל בסדר! היה מפחיד אבל באמת שיכל להיות הרבה יותר גרוע... אבל זה לא, תודה לאל

I had two very different meetings on Friday which gave me a very significant jolt I think for the positive. Firstly our lawyer who is working on the Power of Attorney document came for the signing and I found the act of signing it so hard…it has to be done but I am not ready […]

My internal struggle – guilt versus rest

In the meeting where he told us I had what appeared to be PSP, he made it very clear I had to put the brakes on working. It is happening as we speak but it was in stark contrast to previous discussions when work was advocated. The strong instruction from the Neurologist who I know […]