Living with and fighting PSP

Tag: #PSP

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 […]

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, […]

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 […]

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. […]

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 […]

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 […]

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 […]

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 […]

 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 […]

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 […]

“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 […]

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 […]

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) […]

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 […]

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 […]

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.

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 […]

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 […]

“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: […]

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 […]

Food Glorious Food – Getting used to change (some positive) at breakneck speed

Food Glorious Food –  I thought my career was action-packed and fast-moving, but the last few months of my personal life have been a rollercoaster that has simply left it miles behind. I am on a journey which has such frequent turns and changes that sometimes incredibly significant changes – in a normal life – […]

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, […]

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 […]

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 […]

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 […]

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, […]

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 […]

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 […]

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 […]

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 […]

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 […]

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 […]

“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 […]

עכשיו זה אתה ואני, PSP

פרשתי מהקריירה שהייתה מרכז חיי במשך זמן רב מאוד. עשיתי זאת כדי להתמקד בך, PSP. הנה החוקים. המיקוד הוא מוחלט ונחוש לשמור אותך במפרץ, לעצור, לעכב, לתסכל ולהאט את צעדיך והתקדמותך לטעון עליי פיזית ונפשית. ייתכן שבסופו של דבר תצליח לטעון עליי, אבל זה יהיה קשה, ותודה שמעולם לא נאלצת לעבוד כל כך קשה קודם […]

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 […]

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 […]

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 […]

Drowned in Red Tape

The administrative burden of being diagnosed with a serious illness is simply extraordinary. I’m not complaining—the vast majority of it is completely completely necessary and much of it digital, but it is staggering. Fortunately, I have a lot of help, and my training as an accountant gives me a head start. However, the tasks are […]

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 […]

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, […]

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 […]

PSP Awareness – Does it matter? YES!!!

Why is awareness so important, and why am I about to make it the center of an effort in Israel? I hear the reasons why it is not important from a number of different sources and attitudes: It is the same as Parkinson’s. There are so few people. There is no treatment anyway so what […]

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 […]

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 […]

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. […]

‘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 […]

החיים ממשיכים – מציאת אור בחשכה: המסע שלי עם אבחנה חדשה

החיים בהחלט מוזרים. זה חצות, ואני התעוררתי משינה קצרה. לוגית, אני אמור להיות מפוחד ומלא דאגה. אני לא אכנס לפרטים כאן, אבל האבחנה הנוכחית שלי, שהיא כנראה סוג של PSP, מפחידה, בלשון המעטה, ולא הייתה קלה בימים האחרונים. אני חייב לומר בקול רם שזה לא טיפוסי של PD, אז זה לא צריך להיראות כדרך של […]

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