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, and I am fast coming to the view that they are completely and utterly irrelevant for me on a logical basis. It has taken 5 weeks to get to this place.

Why is this important? PSP has terrible statistics, and believe me, I have looked. They effectively say I have a maximum of 1-5 years left based on different studies, which I am not going to explain. I don’t believe they apply in my case, and I will explain why. I know of exceptions but not many.

Now, just as a caveat and to avoid parties and wild celebrations (which for me would be a small glass of cognac)…the situation is absolutely not ideal. I can’t walk down the street much of the time without shuffling, my eyes are giving me trouble, I have no balance and am declining – so let’s not jump for joy….but optimism and hope, yes!

Age – I had a call with a very senior PSP expert in the UK, and he mentioned that PSP is very rare in people my age. It is also broadly true with Parkinson’s but absolutely with PSP. This, by definition, means that the statistics are sourced from a population much older than me. This puts a significant hole in the statistics. PSP typically begins in a person’s mid- to late-60s, which means the majority of the statistical data is based on older individuals.

Cognition – As I relayed a few days ago, a Professor in Israel told me my cognition seems way above what you may see in potentially some other patients. Despite him saying that he agrees with the probable diagnosis of PSP based on clinical examination, it is another marker that would lead one to conclude that the statistics presented may not apply. Cognitive impairment is a common symptom of PSP and it is a reason why the diagnosis and/or the statistical outlook is far from certain despite the Vertical Eye Palsy, Balance, Falling backwards etc.

Statistical Population – Statistics regarding diseases much studied and with significant populations are probably relatively accurate. PSP studies are inherently vastly lower in their sample size and also need to account for very high numbers of people initially misdiagnosed with Parkinson’s as I have potentially been. PSP affects approximately 6-10 individuals per 100,000, making it a rare condition with limited data. The challenge with the data applies to me and all PSP patients of all ages. We can all beat the statistics.

Impact of ‘Accidents’ – PSP progression is often accelerated by falls, infections, or pneumonia from choking. By being careful, I can potentially avoid these incidents, impacting the statistics. By staying vigilant, I can improve my chances of a better outcome.

Will power – I am not saying others don’t have it, but I have it in spades and this is not measured.

A-typical Case – My condition started 6 weeks after COVID and developed faster than typical Parkinson’s with very strong balance issues and clear eye palsy leading first to a suspicion in 2023 of PSP and then a ‘what appears to be’ PSP diagnosis. This atypical nature makes the statistics less relevant to me. This uniqueness gives me hope that my journey might defy the odds.

As a data-oriented person, I believe that the statements above give significant reasons for discounting the statistical analysis that exists. That, in theory, could indicate it could go either way, and while that is true, both the age and cognition would offer hope, and to be honest, the clock is ticking down on the option of it being more aggressive than the statistics.

Some of you will find this all completely irrelevant. Firstly, because it should for someone of faith like me be largely irrelevant as I should simply trust in G-d. I am still a work in progress on this as while I do to a very high level, I truly am scared by the statistical reality of PSP.

Secondly, time will tell anyway, so we will know before too long. I should and must focus on living – reducing stress, maximizing exercise/diet/rest, and enjoying a good quality of life.

I am not yet ready to fully blank out statistics. They have rightly pushed me to make key decisions to prepare myself and my family, and I can feel it progressing (and I am in clearly worse shape than 5 weeks ago in reality)…but I am not going to place myself at the mercy of statistics. I declare them not materially relevant for anything other than planning for the worst and to give me an incentive to nail beating the odds.

With that out of the way, I will get back to living. This is a big positive step forward mentally! (more than I can seemingly do physically anyway :-))