Living Life with PSP

Category: English Blog Posts

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 […]

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

I am so often asked by people ‘Is it definite?’ I also ask myself the question often…”but what if it isn’t” – wouldn’t I like to know. As I start writing this blog I am not fully sure what I am going to conclude because I do have mixed emotions about the topic. First, let […]

Time and Times – Quality not just Quantity

There are many clichés associated with time and many wise sayings. Over the course of my life, I have paid little attention to them—many of us have heard them and ignored them. One of them that I am now paying very close attention to is another famous line which I now embrace – Quality not […]

Makes blogging worthwhile

“I wish my late husband had had the wherewithal to relay his experience of PSP in such rich detail. I can tell you, he was the unconditionally respected center of our family until the end. He never lost his mental faculties, but the physical barriers stole his ability to communicate verbally. There was always love […]

New Week, New Energy, Reenergized Faith….

Courage to Continue

“Those who have a ‘why’ to live, can bear with almost any ‘how’.” This is one of the really inspiring quotes from Viktor Frankl. He survived three concentration camps including Auschwitz – he has the right to say it. I think he is right. We had a lovely weekend as a family, friends have been […]

Dignity….my fear and my action plan….

RUNNING & RAISING FOR PARKINSON'S

This is possibly the most self-centred blog I have written to date. It is at the core of my fears and wishes for the future and I know it potentially comes at a big ask and at a cost who may have to care for me, hopefully a long time into the future. It related […]

From Giving to Taking: Accepting Help in My Fight

There is no question in my mind at all that giving is better than taking—to me, as a somewhat flawed person. I have always had a pathological dislike/fear of being a taker. I know where it comes from and I understand why, and that is a subject in itself not for public airing, but whether […]

Therapy: The Consultant Who Finally Took Advice

At many times in my life I have debated whether I should discuss matters with a therapist or not. There have always been pros and cons as far as I was concerned and I am not revisiting previous decisions. In 99% of cases I have tended towards “I don’t need help”, “What use is talking […]

Laughter is the best medicine…

“Laughter is the Best Medicine” I have always had issues with this phrase… NO MORE. It is true for me anyway, and it is not a question of ‘To laugh ot cry” – it is I guess in an instance where you have an alternative treatment available in the form of a pill, fluid, or […]

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

Produadopa-Vyalev Pump

For good or bad, I have decided to be relatively open and transparent about my journey. The blogging has certainly helped me selfishly and at times been hard for others. Overall, I think there’s a net benefit to it, for me and others. I think it opens a window for people with a condition like […]

Am I scared?

Every day is Parkinson's Day - Attitude is a big deal

This is a question I’m sure many people ask themselves about their eventual years of aging. I remember thinking about it conceptually many years ago and when I was diagnosed with PD. In the last few weeks, it has become a much more real discussion. The macho answer is to say “No.” Probably the person […]

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

Time flies when you’re having fun. Who would have thought that life after taking a step a little out of the fast lane, stopping to drive, and finishing your relationship with Grape/Malt Alcoholic beverages, which you loved, would be so vivid? Yesterday was a day I initially thought, on waking this morning, very little happened. […]

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

RUNNING & RAISING FOR PARKINSON'S

I have not yet done any investigation into any possible tie to my current condition or a virus or pure random chance, but today saw one of the funniest experiments I have ever taken part in, and I have to thank my neighbor—let’s call him Dr. Y. A.—for his brilliance of thought and use of […]

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

Fight

One week into the ‘Appears to be PSP’ diagnosis and I am coming through the denial and grieving stage and am actually seeing it bizarrely as a positive moment. Don’t worry, I am genuinely not insane…please take the time to read and hear me. I must say upfront that I can only talk here in […]

Blown away, a little embarrassed and grateful

I had no idea before today started that I would create a monster. It certainly wasn’t the plan, but it seems that way. It is embarrassing on so many levels, but I am truly touched, grateful, strengthened, and humbled. I debated with myself whether to blog on the topic of my new diagnosis. On the […]

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

Driving is something anyone who knows me will know that I simply love—or should I say loved. I truly loved it, however rational or irrational. The freedom, the independence, the acceleration, the control—whatever it was, I loved it. Some of my most favorite moments have come in the car. Sadly, this has now become part […]

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

This is a blog entitled Fighting Parkinson’s…so I need to declare that after recent developments it looks like the probable diagnosis is not actually Classic Parkinson’s but a much rarer disease known as Progressive Supranuclear Palsy or PSP for short. Sadly it is a much more aggressive disease in many ways and tends to evolve […]

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

4-4-4 – Learning to Breathe like the Navy SEALs or like me 😀. What t do I mean by learning to breathe? Let me give some context. Life can be overwhelming. More and more gets put on my shoulders with challenges and tests coming from every direction. Recently, it has felt simply staggering. Health issues […]

A Moment to Say Thanks

A moment to Say Thanks – I admit it, at the moment I am a little bit grumpy. PD, a painful infection, and yesterday lots of pain from the cannula site of the Vyalev / Produadopa pump led me to change the cannula twice. Despite this, the overwhelming thought I have is one of thanks. […]

Parkinson’s – it is certainly not boring

This disease is popularly known as the ‘Disease is the gift that keeps on taking’…but one thing you can say for sure is that it is not boring. Whatever you plan for, this disease has other plans….fairly constantly. For someone who is a bit of a control freak (my wife and kids would add their […]

Faking it – are you actually serious?

This is dedicated to anyone who is surrounded by a small fringe element of unfortunately foolish, selfish, and otherwise ignorant family and supposed friends. A couple of friends mentioned in a discussion yesterday that they had been accused by ex-partners, kids, and others of faking it. I am sure people have asked the same about […]

Parkinson’s? …but you don’t have a tremor

PD Diagnosis

The Tremor  – Many people believe this to be the tell-tale sign of Parkinson’s. I am at least grateful that my tremor is hardly noticeable most of the time. In fact, if I check myself right this minute, there is no noticeable tremor in either hand, although my right hand does shake when I clench my […]

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

Impact of Diet and Supplements on Parkinson’s Disease Progression – best/worstu – A very interesting piece of research by the well-regarded Laurie K. Mischley and team sought to identify the best/worst foods to eat, supplements to take, and dietary behaviors for individuals with Parkinson’s Disease (PD). It was published in 2017, but I was just made […]

All from a pair of Airline Socks :-)

Just half a tablet - feels great!

Airline socks…yes. Some of you may know that when you fly a lot, you are often given a pair of socks. This morning, they volunteered to give me inspiration for a much-needed post for myself. I have traveled a lot (and that is an understatement), and I am good at packing. So, to wake up […]

The Courage to Continue…role models!

Courage to Continue

Living with Parkinson’s requires courage. It is not for the faint-hearted. It is tough. A marathon, not a sprint. People with PD have the Courage to Continue

Parkinson’s: A Parasite, Not a Vulture

PD Diagnosis

A Parasite, Not a Vulture – It’s not the many symptoms – it’s the way it feeds off stress, mental anguish, lack of sleep and magnifies…how do we fight it?

Why can’t I finish this sentence?

finish a sentence

Why can’t I finish this sentence? Losing the ability to write if often the first sign of PD. It is so strange and for me ironic as you can read…

Pumped literally and figuratively

Fight

Pumped literally and figuratively – I am truly touched and quite literally Pumped – Reflecting on my obsessive writing I have decided to keep at it….be careful what you wish for

YES to Hope…

YES to Hope

Prior to PD I don’t think I considered the topics of hope or optimism seriously. Now it is on my mind and I say YES to Hope, less so to optimism. Read why….

To Michael J Fox – Thank you

Michael J Fox - used based on Fair Use

Michael J Fox has won the Presidential Medal of Honor and this is my chance to say thanks! He is a role model who has transformed my life and those of millions.

What actually is Parkinson’s Disease?

PD Diagnosis

I have written a PD blog for a while and I very often get asked the obvious question – What is Parkinson’s Disease…It is important people understand it and are not lost in a world of confusion. A few people have asked me this basic question in recent days, and others have admitted they have […]

Delivering the PD Diagnosis – 76% received no training

PD Diagnosis

Delivering the PD Diagnosis: 76% Received No Training on How to Tell People I have just finished reading a new study from France (University of Toulouse) published in July 2024, detailing the perspectives of patients, primary carers, and health care professionals on the “Parkinson’s Disease Diagnosis Impact,” i.e., delivering the news. I was not surprised […]

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

Chill… Take a Deep Breath… You’re Not Doing Too Badly (but see postscript for afterthought:-)) If someone else suggested these words to me, I know immediately what my reaction would be… it would be hostile, defensive, and dismissive. I would get embarrassed, look away shyly, get snarly, and self-flagellate myself. It is up there with […]

The huge financial burden – elephant in the room

Med switch and my muscles...a learning for me

  This is possibly the least discussed topic of all and for many of us, it is an absolute elephant looming large. Of all the articles I read, this is the one that is possibly the least covered. I must state that personally, I am thankfully blessed. I have worked incredibly hard my whole career […]

Choices are limited but yet endless and bewildering

RUNNING & RAISING FOR PARKINSON'S

It is strange that I now notice the more I write, the more I think about the huge array of issues those involved in the world of Parkinson’s have to deal with. One of them is perhaps one of the most interesting and challenging ironies – at least I think so – the array of […]

Time – as someone with Young Onset Parkinson’s

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

  Being 49 years old, and diagnosed with Parkinson’s at 45, my kids find it amusing that I am referred to as having ‘Young Onset’ PD. In most things, they think I am so far from being young (choice of fashion, taste in music, attitudes, nature of my humour…the list is long). So it turns […]

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

Helping you to start the PD Journey

Apparently I have a tendency to repeat as a mantra over and over again the phrase “I am ok”.  It finally only sunk in that it was not the case when my daughter told me in stern language – “Daddy – you are NOT ok.” As usual, she was right. I have come to learn […]

To be open about having Parkinson’s…

the impact of war and my blog from before the war I didn't publish

The last day has been a tough one physically and mentally, as PD has again decided to remind me of its presence in a very public and brutal way. But, as I am feeling pretty good again this morning and am heading soon for the airport, I prefer to skip this for a day or […]

Being a close friend to someone with Parkinson’s

Helping you to start the PD Journey

Much is written about being a Parkinson’s patient and about being a caregiver or partner of a PD patient, but there is less written about how to be a close friend to someone with PD—at least from what I have seen. Yet this ‘unofficial’ role is so important and can have a huge positive impact […]

The fight with PD – head on or guerrilla tactics

A couple of years ago, a therapist said something which profoundly impacted me. It hit me like a truck, initially making me to be honest very angry. Over time, it has really settled, and I have become inspired by it. I am not sure whether you will react the way I did or as I […]

An evening without Parkinson’s

Just half a tablet - feels great!

It is the holiday season for so many. I am lucky that the 24th December is the birthday of my now 22 year old twin son and daughter and the 4th January that of my soon to be 15 year old daughter. I was reflecting on the dinner the 5 of us had last night […]

Addictions and Obsessive behavior – my thoughts

Courage to Continue

  Writing has become obsessive for me…truly! I realized it a while back and a lot of people have observed it. I am not a scientist and therefore offer no medical opinion but circumstantial evidence is pretty strong as the last few days has began to show. I believe it is not out of control […]

You Know You Have a Sleep Problem When…

  When you wake up at 11pm and start writing a post about having a sleep problem, you know it’s serious. For a very long time now—pretty much since being diagnosed with Parkinson’s—I’ve had a serious sleep problem. Until recently, it was just one of many issues on my list of priorities. Thanks to the […]

12 very scary hours and then good service resumed

Everything is back on track now, and today has been good, but the 12 hours from Thursday at 11pm were far from fun. In my commitment to being open about my journey with the new treatment (Produadopa/Vyalex), I feel it’s important to share not just the polished, shiny moments but also the tough times. Despite […]

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

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

Produadopa/Vyalev Updates – 1 week This follows my posts after 1 day and after 4 days Bottom line to save time for those who are fed up reading the blog – the new pump remains truly amazing (with some issues). It is 4am and my sleep challenges remains unresolved but I have finished a 5k […]

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

Produadopa/Vyalev - a few days in...TRULY AMAZING (for me)

What Prompted This Blog Update My post from a few days ago sparked a number of important discussions. Since the drug is pretty new—I was told that 4,500 people are on it, and the number is rising fast, especially now that the FDA has just approved it in the US. In my hospital, I believe […]

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

I have decided to write this knowing that this is very very early days and that a lot can change, but so many people are curious about the journey it is important to document it. This morning I had the Produadopa (in the US it is called Vyalev) pump fixed in the hospital together with […]

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

From pills to the pump… a big step, but very positive, I hope

  I decided to write this post after an important ‘chance’ encounter this week. Some would call it a coincidence – I would call it divinely inspired – and it is the third or fourth time something similar has happened. Additionally, I want to share a significant change in my treatment that I hope will […]

5k at 3am indoors

5k at 3am indoors

Ran a slow, monotonous 5k indoors at 3am due to Parkinson’s Disease symptoms. Medication has positive impact but sleep troubles persist. Prefers indoor running over outdoor due to temperature. Striving to continue daily exercise.

Just half a tablet – feels great!

Just half a tablet - feels great!

Half a tablet – The writer faced worsening Parkinson’s symptoms but found great relief after adjusting medication. Thankful for improvement.

PD Silver Lining – yes there is

YES to Hope

Is there a silver lining to the diagnosis? I know this is strange to write given my recent blog post about a shorter life expectancy and my general mood at the moment which is less than 100% but this research paper reminded me of an important fact, something I should encourage myself to listen to […]

Back to running & learning to cope with acute stress

Back to running & learning to cope with acute stress

As I describe in another blogsite the last few months have been sheer terror especially as a parent whose son is at war. Today was a major milestone in my fightback as I ran my first 5k for 3 months! Stress has had a significant impact on my physical health mainly manifesting itself through a […]

Year 2 into 3…PD has not been the key thing :-)

Year 2 into 3…PD has not been the key thing :-)

It has been many months since I last posted so I thought I would drop a short update, especially as a few people have asked. I will probably regret this because when I say that things are going well, the next day I feel the opposite. So I guess tomorrow won’t be a great day […]

Med switch and my muscles…a learning for me

Med switch and my muscles...a learning for me

Wanted to reflect on the last week….not the best but showed me the importance of being on stable meds. From discussion with my doctor (who I respect hugely and who I trust completely) we began the introduction of Levadopa (Stalevo 75 * 3) and the slow withdrawal of Dekinet (I am staying on Sifrol, Azilect […]

Sleep CBT…an open mind…seems to be working

For the last few months, my sleep has been a complete mess…..waking up almost every night between 2:30-4:30 no matter when I went to sleep. I tried melatonin and harder sleeping pills but didn’t seem to work. I changed my pillow, stopped looking at my phone and all the basics (no caffeine before bed etc)…I […]

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

Courage to Continue

I was not going to write for a while but a number of people have said that my previous post helped them/was interesting so I have decided to keep it up. It is good for me as well – it helps me think and get perspective. Those who don’t want to read….feel free to delete/ignore. […]

Year 1 of PD – Glass Half Full

Produadopa-Vyalev Pump

I decided to keep a journal of my journey – it has been quite a year but I have learned a lot. some of which maybe relevant for new and older PD people. I am not a doctor and this is not a medical opinion but there is lots available to make a stand against […]