End of being a guinea pig – part 2
The drug trial is nearly over. I have a phone app to use for 7 days and a movement sensor stuck to my lower back (which will make their minds boggle when they see the results of my tap dancing tonight). The main drugs part of the trial is complete. They took 7 test tubes of blood, a lumbar puncture (which went a lot more smoothly than last time) and a DAT scan, so for a while today I was radioactive but didn’t have a glow to go with it, most disappointingly.
I have to wait 18 months before we get the results of the trial, see whether I was on the Exenatide or the placebo, and find out my “trajectory”.
I’m pretty sure what my trajectory is because I sneaked a look at my DAT scan screen. I wasn’t allowed to take a picture because of ethics. I can understand the protocol of having the results explained to me by a medical professional but even I could see the change. In my Puckfarkinsons logo which was taken when I was first diagnosed, the “eyes” are like commas with a tail. When I started the trial the commas were more like full stops. Now they are smaller dots. The progression is obvious.
Speaking of when I was diagnosed, it’s 4 years to the day since I was given the Parkinson’s diagnosis. Happy Anniversary. Better get on and make the most of it.
I have to wait 18 months before we get the results of the trial, see whether I was on the Exenatide or the placebo, and find out my “trajectory”.
I’m pretty sure what my trajectory is because I sneaked a look at my DAT scan screen. I wasn’t allowed to take a picture because of ethics. I can understand the protocol of having the results explained to me by a medical professional but even I could see the change. In my Puckfarkinsons logo which was taken when I was first diagnosed, the “eyes” are like commas with a tail. When I started the trial the commas were more like full stops. Now they are smaller dots. The progression is obvious.
Speaking of when I was diagnosed, it’s 4 years to the day since I was given the Parkinson’s diagnosis. Happy Anniversary. Better get on and make the most of it.
Onwards and upwards!
End of being a guinea pig – for now?
Off to London for the last day of the drug trials. I have to have “off meds” observations done, then go to another building for my DAT scan meds (the one that makes me radioactive) then back for some “on meds” observations, including a lumbar puncture and then the DAT scan itself. The “off meds” observations means no medication since yesterday so with rushing to the train this morning it means typing this is entertaining to say the least. The DAT scan will mean that I get to see how my “eyes” are shrinking. By “eyes” I mean the part of the Puckfarkinsons picture that is the Substantia Nigra, the part of the brain that holds dopamine – the magic bit of movement (amongst other things) – that people with Parkinson’s lose as the disease progresses.
More updates to follow…