Produadopa/Vyalev Pump – 45 days in – A Knock Out!

Wow – 45 days already of the Produadopa/Vyalev pump and it is probably a good opportunity to reflect. This is an important topic because a lot of people are wondering how this new technology is going – as am I. As always, this is my perspective only, although I am on a WhatsApp group with many people on the pump, so I am following other people’s progress as well.

It is a Knock Out and not a judge’s decision.

I am going to lay out the positives and negatives, but it is not even close. I am so much better with this treatment that there is simply no competition. It is quite literally amazing for me as an overall assessment.

The Positives

Put simply – I was in a state of total reliance on a walking cane/stick, I was freezing, shuffling, and had terrible balance issues. The on’s and off’s of the Levadopa were like a rollercoaster, and I was an inch away from calling it off from my career. I had little energy, my face was cast downwards all the time. Life was horrible.

Yesterday, I went for a 4k run with my daughter, I walked the dog for a long time with a friend and his dog tonight, and everyone I meet tells me I look years younger and so much healthier.

It is night and day. I could go on, but it is just going to be more of the same.

The not so good…

There are some serious things that need to be considered – it is not simple. This is my list so far, but others have had similar episodes.

• It is not foolproof: On three occasions (each of which I have blogged about – Home, Wedding, and London Underground), I have had very extreme reactions which have included freezing and falling – worse than almost any from before the Produadopa/Vyalev Pump. We are still not sure what caused them. My view and that of my doctors, especially with the last two incidents, is that feeling so ‘free’ I pushed myself far too far while not sleeping and having done a large amount of travel and been in large emotional situations (wedding, funeral, large crowds in Camden Market). In each case, I didn’t raise the dose of the pump in anticipation of an intense situation, and the level just pushed way out of the norm, and the pump was unable to stop it. In short, I overdid it and ran outside the tolerance of the pump. That is my hypothesis. Others on the WhatsApp group have had different but related incidents. The first incident seems tied to coming of my dopamine agonist medicine which may have caused a reation – something also to be considered.
• Infection: Like most of the crew on the Produadopa/Vyalev Pump, the need to keep the stomach area sterile when you insert the cannula and medicine is super critical. I messed up once and got a nasty stomach infection. Horrible heavy clotting under the skin which has taken weeks to recede with antibiotics and a steroid cream.
• Sleep: For me personally, this has not improved and if anything has got slightly worse – maybe because of my extra energy. Whereas before it was one of many major symptoms, it now stands out as the elephant.

Some minor annoyances

• Little things: They seem trivial, but carrying a pump around can be annoying, especially with airports and running, but it is so minor it is hardly worth mentioning.
• Fiddly: The daily dosing process and the every other day injection process are pretty straightforward but fiddly and for some people it may be too fiddly – so it needs to be borne in mind.
• The ordering process: It is relatively straightforward here, but as it is an item that needs pre-ordering and there is a long lead time (a few days), it is critical to be super organized with the administration.
• The machine: A few times the Produadopa/Vyalev Pump has stopped working and warned me there is a possible blockage – either because the syringe wasn’t pointing downwards or the tube was squashed under a belt. This was no issue, but on one occasion (this morning), I felt ‘off’ when I woke up, and when I did my daily change, I saw that almost half the medicine was still in the syringe. It did warn me yesterday there was a blockage, but I resolved it but may have not restarted it – so I need to keep an eye on this.

None of the negatives come close to any form of competition to the positives. In fact, as I have mentioned before – the fact that a major stomach infection and three horrible events in 45 days pales into insignificance emphasizes the unbelievable level of change the Produadopa/Vyalev Pump has brought.

It is still a rollercoaster

Overall, it has been nothing short of miraculous for me, but PD is still there and finds a way to remind you. Because of the high going onto the drug, it can feel like a letdown when it seems to fail and doesn’t shield you. There are few of us on the group who seem to have started with a Bond-type explosion of energy and then have been whacked on the head, brought down a notch, and realigned on a still hugely positive but less dramatic path.

In Summary

Truly awesome technology that I hope continues to give me a huge gain and hopefully helps a lot of other people. It is not a cure, and it is critical to be careful and not overdo it because overdoing it can be very, very dangerous (because you push much harder than before). It is a little bit of trial and error – so take care (I am saying to myself).