I have the studydrug. Finally. Now, new questions are coming up. Is this the medicine or a placebo? Is everything coming too late? A year ago would have been good. Because, according to the study doctor, at best it slows down the progress or if everything is going super well and bestideally, it stops.
We’re hoping…
I sometimes stare at the box and think “So this is the magic I have fought so hard for, the source of my hopes”.
My last appointment made it clear to me, for this, a portion of hope, you have to go through a lot. Firstly, I am very grateful to my companion, she goes through all this torture with me, without her it would not be possible for me.
Then the last examination… it was quite tough. 6 hours in hospital. They took a lot of blood from me – twice, before and after taking the magic pill (which could also be a placebo, but we don’t want to think about that). Then the notorious and dreaded lumbar puncture (which can be refused). I was not afraid of that, I had had it before, when I was diagnosed two years ago, and I didn’t find it that bad, not at all, I didn’t have any side effects.
But this time! This time I had the headache of my life, and it lasted from Monday to Saturday. I could only take it lying down, no sneezing or coughing, bending down, not opening my eyes or even moving at all. I am glad that I did not throw up in the car on the way back from the hospital…
This one week lying around has of course done something to me, my circulation was in the basement – I can now slowly get myself feed up again. A constant up and down with this disease. A lot of work and effort for this little life…
But what else can you do. I still haven’t given up hope that something might come around the corner. Just today I found out that Alterity is also planning something with PBT-343 in the EU. But what? How? And especially when?
How badly these possibilities mess with your own psyche, you can hardly say. Actually it’s already too late for that all, but on the other hand it’s going to get a lot worse. I suppress most of it, because I think that what happens to other patients doesn’t have to happen to me either. In any case, I want to stay “in good shape” when a drug is available one day. In addition, there are the everyday worries and fears, which of course are not helpful for this disease. When I was diagnosed, the doctor said then “Enjoy and do everything as much and as long as you can” – then came the eternal paperwork, health insurance, pension insurance, everything is rejected, existential fears, then came COVID-19, even more fears, removal, again fears and worries and so on. I would like to ask when will this please start with the enjoyment. When I am so badly off that I can’t wipe my nose anymore myself? Of course it could be much worse (I could live in Timbuktu, where people know even less about this disease). And of course there are also bright and beautiful moments that only don’t last long, because they are mostly overshadowed by reality.
All in all you do a lot, you fight against time, and you make careful plans for the future. Not “you” – me.