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 me say the obvious….I truly hope it isn’t and whatever small percentage is on the side of not the better as far as I am concerned. The sad fact is that if it is not PSP then it is a very aggressive form of Parkinson’s so it is not exactly like the other choice is a free vacation home in The Bahamas…but I would still take it.
Second is the reality is that we will probably know in the not too distant future. PSP is not a disease that tends to hang around for a very long time so if I was to make it through the next few years relatively unscathed it is probably not PSP as PSP in nearly every case claims its victims before 10-12 years of original symptoms (aka that started in 2020 for me) and that is being pretty generous.
Third is the probable fact is that it is what it is….probable. I have spoken to a number of experts in the country and outside and the fact that I have vertical eye palsy and very significant balance problems, such that I fall straight backwards when I simply stand straight without doing anything to support myself together with the fact that the Parkinson drugs whilst helping a number of symptoms don’t do anything for balance are very very strong signs of PSP (PSP-P) as is the overall speed of progression but given that the MRI I had two years ago seemed clean and my cognition is good is not necessarily textbook. I have been a confusing case since admission 5 years ago, coming 6 weeks after COVID and they did extensive testing for autoimmune encephalitis and other things before ruling it PD. The simple reality is that it will probably only ever remain probable or some other word such as likely, strongly suspect etc. No one I think is going to offer a definitive Yes or No.
All of this blog is personal…clearly at a science and research level it is far better to know. It is also better for awareness and fundraising because for as long as the ‘probable’ hangs in the air which it does for so many it lessens the focus and attention of all parties.
So, from a personal living life perspective here and now, these are my thoughts..
In the game of theoreticals I would really like to know for only one real reason and that is to hopefully find out the doctors are wrong and that I am on the unlikely side of the fence…although as I said that would leave me with aggressive Parkinson’s so it wouldn’t put me in a transformationally different place.
To be honest, I can’t actually think of more arguments in terms of why I would want to know. They say certainty is a good thing in general but I am not sure it would help with a 100% full proof diagnosis but here I am not so sure. Knowing it is not would probably slow down some of the moves I am making in the planning I am doing but we are really talking about the benefits of knowing it is PSP. What exactly are they?
There is no treatment so it makes no practical difference. Of course if the treatment plan was different or needed to be altered then I would jump on it.
If there were clinical trials available where I am which mandated a definitive diagnosis then that would potentially be an advantage but that doesn’t seem to be the case…I hope through the campaign I am gearing up at the moment that this changes soon.
On some strange twisted level it would make it easier to resign my fate and easier for people to know definitively (it seems some people prefer to know you are definitively diagnosed with a truly terrible terminal condition :-)) but that has two fundamental flaws:
Flaw 1: By doing so it takes away one of the only tools the human mind has – hope. Hope that it is wrong and hope that given my completely atypical journey from the start that again it will buck the trend (although atypical in PD is usually not for the positive).
In planning for the worst and hoping for the best I at least maintain three forms of hope:
- It isn’t PSP and it is something significantly softer.
- If it is PSP, then I hope I am one of the ones who has one of the safer and softer landings
- If it is PSP and not a lighter one then I hope I and my family have the courage to cope as ably as possible with the challenges that unfold
Irrespective of the percentage chances I am making it an absolute priority to focus on a Quality of Life. I am just finishing a couple of days with one of my kids and it has been such a huge pleasure to spend time with her…we hardly talked about or mentioned the word PSP – we had fun. We made changes to the plan we would otherwise have had but it made no impact and in fact allowed her to go shopping in the mall herself without a nosey father whilst I sat in a coffee shop – which was a win for both of us 🙂
Flaw 2: Of course my favorite option is a complete free pass open miracle – but that needs a complete and total miracle which of course I will continue to pray for but for that it makes absolutely no difference if the doctors say probable or 100% certain – the miraculous truly doesn’t care what science says so in that regard it makes no difference.
Although certainty in life is usually a positive, here I don’t think so. I truly hope all of my planning and preparation is wasted and is an unnecessary use of the prayers of people and an overreaction.
The grim reality is that one way or the other I need the miracle option because the very likely probability is that it is PSP and the backup alternative is also truly a horrible one.
I will fight hard either way and focus on enjoying life, minimizing stress and at the same time use my probable diagnosis as a catalyst to try to do something for PSP. Your help is still needed. Whether the diagnosis is 80%, 90% or 100% it fundamentally doesn’t change the fact that for me (and you may disagree but it is my blog :-)) it is in God’s hands in any of the scenarios.
