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 “next-door neighbour” to Parkinson’s that no one clearly explained. And, tragically, I found myself actually wishing it was Parkinson’s Disease. Something I could understand. Something with a name, a path, a treatment. Parkinsonism felt amorphous, like a fog I couldn’t see through.
I remember the confusion vividly: the half-day in the eye clinic, the uncertainty, and the moment a doctor remarked, “The onset is incredibly strange, but from the DATscan, it looks so much like Parkinson’s Disease I could use it in a university textbook as a picture of the classic version.” It was confusing for them but lost on me.
Fast forward five years, and it turns out the doctors were right. The problem wasn’t the diagnosis. In today’s scientific world it takes time for the specific strain of ‘ism’ to become dominant. My understanding however was completely off. I now realize how under-informed I was.
Two years in, they noticed my eye issue, vertical gaze palsy, and briefly considered PSP. But an MRI seemed clean, so it was taken off the table. I remember the fear of my wife and I, googling PSP and its life expectancy on the way home, then the relief when the MRI showed nothing. But three years later, uncertainty returned. PSP had been hiding in plain sight.
Eventually, the picture became clearer. What I have is one of Parkinson’s “cousins”, Progressive Supranuclear Palsy (PSP), a more aggressive and fast-moving neurodegenerative disease.
In hindsight, Parkinsonism sounded softer, fuzzier, but the reality is far from it. PSP is worse. It doesn’t respond to dopamine-based treatments, and there’s no effective therapy.
And here’s the thing: language matters. It’s our greatest communication tool, but sometimes, it’s the biggest barrier to understanding. I didn’t really emotionally grasp, except for that brief moment two years in, that I had something other than classic Parkinson’s. That lack of clarity had consequences:
- For emotional acceptance
- For research participation
- For resource allocation, should I have been given the Produodopa/Vyalev pump? I don’t know.
And that’s the point, I don’t know the answers to any of these questions.
But it wasn’t just language. PSP hides. Research shows that in its early years, PSP can look almost identical to Parkinson’s Disease, so much so that around 60% of cases are misdiagnosed at the start. The true face of PSP only reveals itself over time, and by then, the window for certain interventions may have closed.
Eventually, hopefully soon, when there is a treatment for PSP and other forms of Parkinsonism, early diagnosis will be critical. I hope the ongoing work on biomarkers and diagnostic tools brings us closer to that future. So many people live with this uncertainty, it’s tragic. In the meantime, better communication will help and that is why I turn to the podcast.
I want to thank the team of the Movers and Shakers podcast – https://www.moversandshakerspodcast.com/podcast/episode/fca446e2/parkinsonism – , not just for tackling this topic, but for doing so with honesty, clarity, and compassion. The guest they featured gave me something I hadn’t felt in a while: confidence. Confidence that although this disease is terrible, it is still possible to carry on. It is clearly a topic which needs more coverage but it was very important.
This is my mantra now: to make the best of life and find meaning in it. Positivity is key, and I can truly say I am positive, despite and even because of embracing the practical needs I now have, like the electric wheelchairs I use at home.
If you’re on a similar journey:
Ask questions. Push for clarity. Don’t underestimate the power of understanding.
It might not change the diagnosis, but it can change everything else.
One Response
Ben, I’m very glad to have seen this post and grateful to you too. My circumstances in Scotland are very similar!.
Almost 2 years (Nov 23) of my GP initially saying “I’m 90% sure you have Parkinson’s” and followed by 21 months of visits and scans to the point where recently I wrote to my Neurologist and said – what is it I have – PSP or CBD..
He states “this is a very complex issue” but (almost) concedes its CBD with plenty hints of PSP. Both are parkinsonisms, as you know but I feel some relief that I can now begin to understand these and plan for the future.
I am sorry to hear that your situation is quite advanced with a wheel chair now necessary. Your experience of taking the first Rolls Royce one was very funny. I’m fortunate that I am at an earlier stage than you.
Your positivity is amazing.
I will be looking at the podcast soon and will feedback on that soon.
BTW, I am now actively studying 2 new interests. 1. Modern Monetary Theory (MMT) to let me try to influence UK Government to adopt this concept to avoid the heavy austerity agenda here in the UK and AI after reading the wonderful book by Karen Hao (The Empire of AI). Has AI become a big thing in Israel?
Take care