The Parkinson's Pump

About Parkinson's and health Wellbeing
1

Foslevodopa-foscarbidopa

I saw my consultant on 28th May 2024 and intended to ask for some more information on this new drug delivered by pump. It is intended to iron out the peaks and troughs of standard oral medication by enabling a constant level to be maintained over a 24 hour period. In the event I didn’t need to ask as he brought the subject up first. It won’t be a quick fix and he advised that it may take 12 months or so to complete the process. Amongst other things training is needed to change the phials and manage the pump itself,

This treatment is very expensive, so much so that it is likely that the funding available this year will only make this opportunity available to ten people locally in the first wave; I feel very lucky therefore to be offered this opportunity at this stage.

We didn’t get around to discussing why he thought I would be a good candidate to be amongst the first few to try it, but I suspect that it is because we both agree that deep brain stimulation (dbs) would not be right for me. My ‘other’ condition, normal pressure hydrocephalus, would make the delicate surgery required in dbs to be much more complicated and substantially increase the risks; this means my only option is to take whatever my Parkinson’s has in store for me and manage it as best I can. Ironing out the peaks and troughs, if this works for me, could make a substantial difference in managing my symptoms.

Two final points.

My medical team and my PD nurse in particular, have been calling me either complex care needs or advanced Parkinson’s for some time now. Maybe I am in medical terms but such labels mean little to me. As far as I am concerned I have Parkinson’s and I am just getting on with my life as best I can which is no different to how I lived my life pre-diagnosis. It will be interesting to see what impact if any, our differing views have on the process for the pump.

Finally, in a recent reply on the forum I wrote that i would write a ‘running commentary on my experience of the process I was planning to start that once the process itself was underway. I have, however, since changed my mind - my first post should be a review of how I came to be offered this opportunity, which is what this post is.
Tot

2

Tot, thank you for sharing. Have you started the Pump yet? How is your experaince so far? What day/ night dosage are you currently on? Would love to hear any input you have to share. Thank you.

3

No it hasn’t got going yet. My consultant said it could take 6-12 months as it is the first local roll out there seems to be several things to sort out. He was waiting on local agreement for funding and was expecting approval to be given but it is very expensive (although potentially save money in the long term) and with the change in government and talk of crisis in the NHS I think we can only wait and hope but I will update you as I go along.

4

Hello All
This is just a quick update as promised. I saw my Parkinson’s Nurse today and went through the data that had been recorded on a PGK device I had the opportunity to use earlier this year. This is basically a watch you wear 24/7 that records all movement and from which it can be determined how effective your medication is - it is most impressive. In short I am doing well being in the mid range of all markers. This led her to suggest that it may be too soon for me to be offered the pump, especially as it would mean coming off the Ropinirole I have been using successfully from the beginning almost 15 years ago so won’t be straightforward, Unless he contacts me in the meantime, I will discuss this with my consultant when I next see him in six months. I understand they are still waiting for funding to be approved.
Tot