The pump – very first impressions…(Produadopa/Vyalev)

I have decided to write this knowing that this is very very early days and that a lot can change, but so many people are curious about the journey it is important to document it.

This morning I had the Produadopa (in the US it is called Vyalev) pump fixed in the hospital together with the nurses of the drug company and neurology department, and one of the Neurologists who is in the team of my Neurologist (who also checked in on me). She actually saw me when I was first diagnosed in 2020 and wrote and presented the first paper written about my diagnosis that I mention in my first blog. They are awesome!

The initial impact is best described by reference to the doctor’s check just before it was fitted and a short while after (45 mins or so).

In the test before, I was in an “off” mode being just before my next due dose of Sinamet. I was mentally perfect (except on the cognitive side although I got the date today wrong by one day) but my right hand side was very weak (I could hardly open/close the thumb and finger of my RH), I failed the pull test by losing balance before I was pulled back (I went back on my own accord) which is the balance issues which has caused me to use a cane, and my walking was probably 50% the speed and gate of normal. I was not good!

The Produadopa/Vyalev machine was fitted and an initial launch dose (equivalent to a usual full tablet dose) was given and I was back to normal within minutes – walking regularly, balance ok and able to move my right hand about 80% as well as my left.

I have had this effect before, some months ago when I was prescribed an additional dose of Sinamet so it wasn’t such a surprise to me but the immediacy was to the team. I was smiling, expressive and clearly on a high of sorts (it is dopamine).

Since then it has calmed down to a steady state and is working really well and once in the early evening when I felt a tiny bit off (I mean a truly tiny bit, almost imperceptible) I tried to use the boost button and it helped. In truth, the off was so minor – I just wanted to try the boost option.

This is all with the exception of one area which I will mention below (and you may guess given that it is 11pm Israel time).

So what is it like? As you can see from the photos, it is not exactly small. It is like a large mobile phone from the 90s and weighs about 400 grams. At the moment I have it on a shoulder strap but in coming days and weeks I will experiment with it. I have been given a belt option.

I have learned how to use the Produadopa/Vyalev pump but I go back to the hospital tomorrow morning to do a number of checks including the first refill which I have to learn. The day after we replace the cannula for the first time and do what will initially be a new injection into the stomach once every two days.

I have been told that being incredibly careful in the loading is crucial to avoid the risk of infection which is real potential issue. It must be done super carefully.

By the afternoon I started to get used to having it on me although I will not pretend that it is going to be a walk in the park. Under a sweater it is well disguised (looks like I have shoulder holster which could be interesting) but it stands out a mile over a T shirt.

Sleep…this is what I was most worried about. Falling asleep with it was ok and surprisingly easy. I went to bed at 815pm ish and all I had to do was reduce the setting of the machine from “Base” to “Low”. I woke up bright and totally alert before 11pm and at this moment am completely wide awake. So it is clearly not improved this side of the disease YET but it could be a hundred factors such as anxiety, early adoption, discomfort or normal sleep hygiene factors so too early to tell.

It is a long long road and will be tested in the coming months, especially as I navigate things like exercise (in a couple of hours), a shower (I am allowed to take it off and stick a clip in the cannula for ideally no more than 30/45 mins), travel and have to carry the medications (liquid ampules which have to be stored in a fridge) and a hundred other things. That is all to come and I know there will be bumps. As always PD will fight back but I have been in the game a while and I know that:

The reason for writing immediately is that I want to thank G-d, the medical team, scientists who have made this available and available to me. It could be a complete game changer and it looks great so far. I want to thank my family for the continued patience and support especially my wife.

I will keep people updated as this is a new drug and I am amongst the early adopters.

I will hopefully get some more sleep but for now thanks and love to all.