Believe it or not, the hospital told me this morning that my patient number is “007”. James Bond I am not, but I have had a truly amazing transformation in the last few weeks, and it feels a bit like a movie. The doctors I saw this morning see it in the tests but more broadly see it in my general demeanor and posture.
I am part of a growing and truly lovely WhatsApp community of people who have moved to or are seriously considering the move to the Produadopa/Vyalev pump (contact me if relevant for you). A number of the other group members are seeing a transformational change in themselves, albeit each at a different pace. The heavy caveat is that some are struggling, and one has pulled off the medication. In my four weeks I have had a 24 huge blip due to the transition of other medication and am dealing with a current stomach infection which I am beating off with antibiotics. That said, it is unbelievable.
Perhaps it is a measure of the Parkinson’s itself that a stomach infection, where a large slice of my stomach is hard like a rock and bright red, is seen by me and the doctors as a completely minor thing. Quite amazing when you think of it that way.
Someone on Saturday told me, “You are not disabled anymore,” and the nurse this morning said to the doctor, “He doesn’t look ill anymore.”
To be honest, I feel like this is a little bit like an “out of body experience.” I am not used to it and remain stubbornly suspicious due to the ups and downs of the past. One month in, however, I am prepared to acknowledge to myself that it is an unbelievable personal miracle and to thank G-d for it.
I still have my sleep to sort, and I made a big decision this morning. I was pursuing a groundbreaking technology solution and had booked a session in the beginning of January in Germany at a research lab. I am putting this on hold. I need to give time for the new meds to kick in and be calibrated (we adjusted the sleep-time dose a little up) and other traditional methods (e.g., Melatonin, etc.). Putting a huge new step in the process is too much for now.
The new pump is far from a cure, and I know full well that this new life I have is completely governed by a thin tube between the pump and my stomach and that one infection too many may spell disaster.
We all, however, live life on a tightrope. The slightest thing can change our lives in seconds. I just see it that more clearly now.
I have written before that I will not for a second rest on my laurels. I will push on the fight and try to keep my fitness and routine up. It is multiple things that keep me going—the pump is just one of them. I will focus a blog on some of these topics soon, but for now, I must repeat the sentiment I had at the very start: gratitude to the healthcare professionals and my group of personal helpers who are doing their very best to tackle the issues PD brings.
Bond I am not, but there is a team of ‘Q’s’ out there hopefully making and refining meds for us Bonds to use in the field.
___________________________________________________________
I am not a fan of marketing but am keen to pass this to as many as possible so please share/forward and feel free to join this whatsapp group to receive updates (notification group only – no discussion :-))
