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About nine months ago when I was diagnosed as having “appears to be PSP”, the phrase “appears to be” was both a lifeline and a frustration. I held on to the hope that it could be something less invasive and less devastating. At the same time, it was annoying because after five years of thinking it was something else, Parkinson’s, you just want to know.
In the months since then we have moved from “appears to be” to probable to a clear diagnosis, sadly. But there is no 100 per cent certainty until autopsy. There is simply no definitive test, as is the case for Parkinson’s, Alzheimer’s, ALS, CJD and a number of other conditions.
I have since learned that doctors do not like giving the prognosis of PSP. It is a diagnosis of last resort because of what it means and what it does, so “appears to be PSP” is usually incredibly strong enough evidence of the basic facts as science does. The truth is you seem to have to be in pretty bad shape to qualify for a potential PSP diagnosis.
In my case, what we know is two things.
- I have the clear markers: vertical eye palsy, backwards balance, the disappearance of key Parkinson’s symptoms like tremor and the far lower effectiveness of Parkinson’s drugs to the point where I stay on them on advice simply because they might offer mild assistance, as is the case with PSP-P, and because of the potential for very significant withdrawal symptoms.
- Secondly and far more importantly are the facts on the ground. It is moving fast and has me in a wheelchair to get around. It has me falling, freezing, choking and showing other determinable symptoms.
On advice from a specialist in the UK we ruled out one other option, Adult version Niemann-Pick genetic disease, after a barrage of genetic tests. It was even rarer than PSP but offered the upside that there is some form of brand-new treatment and the downside of being genetic.
So, as with so many other things in life, there are pros and cons with certainty. I think most of us with PSP know it is in fact PSP and the proof is not the test but the development of the symptoms. For others it enables people to cling onto the hope it is something else – but sadly it is something well out of the ordinary.
As a person of faith, I know that whether it is 99 per cent or 100 per cent it makes no difference ultimately to me – I have to live my life as I need to.
This is part of a bigger picture of the lack of a true test for PSP which leads to the misdiagnosis vicious circle. With people being diagnosed late they cannot be patients for trials, which leads to few trials, little investment and as a result no treatment at all.
Science is advancing and I hope biomarkers and other techniques will resolve this puzzle soon – for some the uncertainty will sadly be lost but for future treatment and better diagnosis and outcomes for people it will be a big win.
