Today I sat through my first check up from the Neurologist and team post launch of the pump. It comes after a weekend when my amazing reaction to Produadopa (Vyalex) dropped a little and I felt shaky and much slower.
I must confess this rattled me….but I was reminded today how much I have improved in the grand scheme of things – it is truly staggering.
The slight dip did lead to an amusing moment on Shabbat. My head started to nod involuntarily for much of the day. The kids jokingly (although they may force me to make good my agreement) got me to agree to a number of things and they were deemed approved due to my nodding (I couldn’t stop it). We will have to see if this is accepted as legal practice but they were at least happy.
So today, we discussed it in the hospital and we raised my base and high level dose by 0.2ml/h (from 0.39 base to 0.41). Hopefully this minor adjustment will iron out the bumps.
We completed a medical check and answered many questions – all was good. I surprised them a little when they asked “Yes” to the following ” Had I cried at all (after saying no to feeling depressed, anxious etc)”. A little nervous – because they have got used to my positive outlook – they relaxed when I replied that it was at the end of a movie I was watching with my daughter they let that go as a No. For those who want to know it was “Hidden Figures” and yes I am sentimental.
I was made aware by the hospital (not with any details of course) that a number of the other patients are taking far longer to feel the effects and that is has not created the immediate impact it has had with me so this is a very strong cautionary note that no two patients are the same. In many ways as I have written before I am probably an outlier but I will still chart the progress anyways.
I am due for a next check up in two weeks when we will see if the new dosage is helping. We have also started the withdrawal from other PD drugs (Sifrol we reduced and next time we will start to hopefully remove the Amanadine) and we will see how this goes.
In two and a half weeks I am travelling and navigating an airport with the pump and vials of liquids will be interesting but the doctor gave me a signed letter from the hospital explaining the medication so hopefully all will be ok.
I am truly aware of the blessing I have been given in being put on this drug. Unfortunately despite my short time with PD, I really needed it as walking was becoming very hard and I had very little balance. I do recognize that lots of people are queueing for this and other treatments and I hope that I in no way have given rise to any feelings of resentment.
I have had the privilege to speak to a number of people in the last few weeks who are considering the procedure and I hope I have been able to offer an insight – I am happy to speak to people who want to discuss this with me.
Wishing everyone the best and once again thanks and gratitude to all who are helping me and all the other patients with their PD journey.
6 Responses
I have turned down DBS because the very thought of having a hole drilled in my head terrifies me, though I appreciate many PDers have found it successful. I’ve greed to be considered for the produodopa pump system, so I’m very interested in your experience with it. Thanks for taking the time to record it.
Thank you and good luck
Well, the speciality pharmacy will be contacting me this week, to send meds, a little nervous re: all of this.
Wishing you all the best. I have just come out of the pharmacy. It takes a little bit of effort to bed it down as it is new but we seem to be getting there. If you need any advice feel free to shout