[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 them, patients and caregivers alike.]
As a relatively young, aware, and yes, sometimes obsessively vocal PSP patient, one thing strikes me: how rare we are. Unlike forums for Parkinson’s, PSP online discussions are largely caregiver-driven. It can feel oddly eerie and a little isolating, but I’ve also witnessed something truly remarkable: the unsung champions who navigate a challenging reality I pray will one day be changed for the better.
The Diagnostic Maze
One reason for the limited patient voice is what I call the “PSP Sandwich.” Sadly, roughly 60% of people are initially misdiagnosed with another neurological condition – most commonly Parkinson’s disease (PD) – according to a 2022 survey by the Progressive Supranuclear Palsy Association (PSPA), often until Year 3-5. Add to that a life expectancy of just 6-12 years post-symptom onset (depending on type and survey), and there’s precious little “filling” – active time in between – especially since diagnosis often comes at an advanced stage.
Experts can better explain the reasons, but as a patient, it seems to stem from: (1) PSP’s initial similarity to PD, even showing positive on DATscans (a brain imaging test for dopamine levels) as related diseases; (2) no definitive test or biomarker for PSP and other atypical Parkinsonism type diseases; (3) low awareness due to its rarity; and (4) sadly, no treatments make it a diagnosis doctors hesitate to give early. This creates a vicious cycle: fewer patients for trials and advocacy, so (5) limited R&D investment in a disease with so few “able-bodied” participants, when other noble causes promise broader impact.
Eventually advances in technology, science, and the dedication (and our support) of organizations like PSP Association and CurePSP Foundation, universities and research institutes and pharma companies will break this. For now however the work of the Champions goes on.
Everyday Courage
Without treatment and facing a grim prognosis, what do people do? They become everyday heroes – quiet champions of grace. Even in our small PSP community, I’ve received numerous messages (some privately and some on forums) from caregivers and fewer from patients, sharing how they care for loved ones with respect, trust, kindness, and dignity against all odds.
Within this resilient community, I’m every day more inspired by the courage and perspective of patients and caregivers alike. Their words capture the daily realities and the quiet heroism that often goes unseen.
Three responses to my blog post on Quality of Life yesterday, especially inspired this piece. Here are sanitized, anonymized excerpts that convey their flavor:
‘Whatever tomorrow brings, it brings. And whatever surprises PSP has for my guy tomorrow, we will deal and move on to the next surprise. A short walk with the rollator, being able to see during a game of cards, a ride in the countryside, or just not falling over backwards in the yard brings joy to our life now. We don’t know what PSP has in store for us in a few days or weeks, so enjoying even the little things we can today is what we do to remain positive.’
Another offered a powerful reminder: ‘We can choose to be consumed by PSP or we can consume it. Taking it day by day instead of overwhelming ourselves by trying to reconcile the journey affords us time to recognize the miracles along the way.’
Perhaps hardest to read, but incredibly inspiring, was a caregiver whose husband is in late-stage PSP: ‘I am not the one who no longer walks, talks, drives, reads, uses technology but I have had to adapt too. I think he may have?… I know he can still have a smile when we reminisce, or I share a joke or a memory pertinent to us with a visitor. He loves to see the grandchildren… They bring a smile too. Some days I wonder about the quality of his life now but… I ‘normalize’ our lives with routine and me chatting like I always did.’
I’ve shared these anonymously and as slightly altered excerpts to protect confidentiality, but they reflect the original voices. These are just some of the unsung champions – patients and caregivers – who, day by day, find meaning, dignity, and even moments of joy in the face of PSP. Their resilience and honesty are a testament to their ‘quiet heroism’.
This applies far beyond PSP, to countless illnesses and conditions. Without fanfare or endless blogs unlike me, people cope against massive odds, care for loved ones, and – I believe without research to prove it – stoically hold onto positivity and purpose in a shrinking world as patients while performing altruistic feats of heroism as caregivers, family, and friends.
Of course, many people are suffering terribly and I can’t take away from that, but there is this other perspective which I see emerging from the darkness.
My Perspective
Many avoid blogs like mine and social media groups because they’re not overtly upbeat or easy reads. But in my view, they’re profoundly positive.
Like everyone, I hope for a miracle, but I’m no more deserving than others in need (PSP or otherwise) and I am conscious that I already enjoy multitudes of miracles in my life such as the ongoing ability to write and communicate, alongside the countless blessings in my family’s health, my kids’ growth, my wife’s love, and the rewarding life I’ve lived.
It comes down to a choice: We all face illness and an eventual end, but how we live counts. Every day I can write, find purpose, watch my family flourish, and share moments with loved ones is a gift. PSP doesn’t erase that – it reshapes it. Yes, there’s discomfort, pain, and losses, but I can still do far more than I can’t. Most days are more satisfying than I ever imagined under a terminal diagnosis: chess, laughter with friends and family, Netflix (blur and sound-only sometimes), writing (ditto the blur), excitement over my kids’ lives (weddings and all), and life’s general ebbs and flows.
I may be naive about what’s ahead, especially if cognition fades, but so far, the fear outstrips the reality. I have faith it’ll stay that way. Others may disagree, but I remain optimistic.
All of this relies on an army of unsung champions: caregivers, friends, family, and PSP organizations supporting us. Thank you – from those who can still voice it, and those who cannot.
One Response
Many thanks for your blog – and its summary which was forwarded to me by my wife, who is as supportive as yours and is also very clever and more capable than I am. I hope that writing will be as helpful to me as your blog is to you. Meanwhile, my background:
I am a 79 year-old man who was (correctly) diagnosed with PSP in July 2024 (I am still in the early stages, I hope). My neurologist told me it was Parkinson’s-plus at first, but his diagnosis was later confirmed by another neurologist who is involved in researching neurological diseases, at the Queen Elizabeth (QE) Hospital in Birmingham, UK.
My symptoms are not (yet) as severe as yours, and I can still walk (but not run, as I have also been diagnosed with arthritis in both knees, which doesn’t help me to distinguish complications arising from arthritis and from old age, from those associated with PSP). My wife tells me that old age causes many overlapping problems – Bismillah will be 82 next week. As I write I have to go back over each paragraph to correct many more typos than I used to make (I once could touch-type but now am reduced to two fingers). If I miss a few then I apologise, but assume you will understand.
My symptoms overlap with yours but there are differences, mostly positive in my favour. My hand-writing went scraggly months ago, and for safety reasons I no longer drive (I am unable to focus my eyes, so I assume that my brain is at the centre of my PSP problem).
I have not had Covid but I have had several jabs including boosters, mostly from Pfizer. Until I read your blogs we had assumed that PSP was a direct result of these jabs (but there is no supporting research for such a claim that we have found, or that our doctors acknowledge) I now wonder if preventing Covid but taking anti-Covid and booster jabs (which my wife reminds me incorporate a weakened version of the RNA in Covid cells) allowed PSP to flourish, at least in the weakened form, that I have experienced so far.
By the way, and for what it’s worth, my blood group is O-rhesus negative and my paternal grandfather was an Ashkenazi Jew (my father was also Jewish but married out and my mother was not Jewish; both are now dead).
I will write more later, with the main differences in symptoms that I experience (if I haven’t bored you too much already).