Firstly I have to come clean with an error -It has meant I have ranked on the first page of google – see picture – for the wrong product 🙂 Such a pro.
It has been so long (relatively) since I have written about the Pump. It is crazy to think that up to a few weeks ago, this was the most important Parkinson’s topic in the world to me.
It was groundbreaking, exciting, a “game changer” yet it was causing infections…nonetheless I continued to declare myself a big fan.
Quite rightly people have recently asked me how it is doing. Here is an update – as always from my own personal point of view.
It is doing fine is the truth but I may not be the best judge. Let me explain.
My diagnosis seems to have shifted towards PSP-P (Progressive Supranuclear Palsy, an atypical cousin of Parkinson’s that is more aggressive), as you can read from a number of recent blogs. There is no treatment for PSP but the “-P” is an indication that the disease is helped by levodopa and other dopamine replacement drugs.
This is the case for me.
I don’t suffer from On and Offs per se and that is HUGE, and many of my Parkinson’s symptoms are kept at bay by the Pump such as my tremor which Freezing seems to have been less common noticeably. My cognition is good (which is an anomoly for PSP and I hope it continues as such or points to a different diagnosis) as is my general level of relative dexterity.
My balance and slowness of walking/shuffling don’t really seem to be impacted by the Pump at all…my balance seems to be constantly off and my gait seems to be much more a factor of stress and sleep than they were before. As an indication…the doctors (on the last four occasions it has been tested) simply can’t do the ‘pull test’ – I fall back immediately on standing straight up without aid. This some of them have said together with a clear Vertical Eye Palsy (difficulty moving eyes up and down and can’t track a finger moving up and down whereas I can track it horizontally) is the indication it is more likely PSP.
In short, I have no way of comparing what would be the situation either back on Sinemet or if the Pump was switched off but my strong feeling is that it is helping to a significant extent more than either of these scenarios but potentially along with the fact that it is possibly/probably not plain vanilla Parkinson’s, it is having a more limited effect on the more PSP related symptoms.
After the last appointment my dose was raised significantly but it doesn’t seem to have made an effect against the balance related symptoms above.
I have not had another infection since the last one some months ago and day to day the procedures to clean, operate and supply the machine are smooth with some occasional pain from the cannula site and occasional blood loss on replacing the cannula.
I write less about it for two reasons – firstly I consider myself a prototypical user of the Vyalev/Produodopa Pump because it appears to be PSP-P but also because it seems to be doing its job on a consistent basis without too much noise. This is very welcome relief and it is possible it is giving me significant breathing room as a result.
A lot of the above is purely subjective and measures me against an alternative reality that I can’t measure but bottom line I would say it is doing its job well, so as for now I am a fan but a more muted one, probably because I have a whole set of issues the pump can’t reasonably be expected to take care of.
As a caveat – and as a hope – it could be a form of aggressive Parkinson’s and not PSP but at this stage it doesn’t appear so.
