A couple of weeks ago I wrote about my experiences whilst having Covid-19. I think the strangest thing that came out of all of that was the amount of vitriol I received. Anger and nasty comments from anti-vaccination people who read the title of my post along with the image of a testing strip, and immediately jumped to the assumption it was about getting vaccinated. Whatever their issues with me were, it was clear they all stemmed from their belief that the vaccine was evil, I was stupid if I took it (one disgusting person went so far as to call me ‘retarded’) and that all the science around covid was false. It was evident that reading the actual article wasn’t required. The blog post about Parkinson’s. But why let the truth get in the way of your insults? 

It is therefore with much trepidation I write again. I’m also writing about medication and science. 

I’m not going to pretend to know everything there is to know about these subjects. Heck, I don’t even know everything about Parkinson’s. Yet I can tell you that the fear of science is real, and I don’t quite understand why. What I wanted to say to these people that would happily discount everything they don’t understand (and there appears to be plenty of that too) is this: I sincerely hope that you live a healthy life free of nasty creeping illnesses. Let me explain. 

How wonderful it must be to wake up each morning, free from ills and pain. How amazing to just walk easily across the room to the bathroom and simply reach down without care to pick things from the floor. Whilst I can indeed walk around on a morning, I must remember to lift my foot properly so I don’t limp. If I need to bend over to pick something off the floor I am slow. For the first time in my life I feel physically old. I realise this must be what it is to feel infirm. Yet I am of reasonable fitness, and I’m still many years away from the big Five-O. I tend to begin my days with yoga now. Not  because it’s trendy, cool and hip. Because without yoga or physio on a morning I feel so much worse. I feel stiffer. I finally know what it is to really suffer with Parkinson’s, instead of the minor annoyances I’ve had thus far. 

I take my pills. My precious mediacation, without which I cannot function normally at all. Four dopamine agonists, pramipexole packaged up as Ramipex. One carbidopa / levadopa replacement named Sinamet. Oval and yellow. Daily I smile with wry irony at the plastic brigade who campaigned so hard for the ban on plastic straws. My Rampiex tablets come in a plastic blister pack of ten. Seems fair until you realise I take ten of them every day. At least the Sinamet come in bottles. I throw the emptied Ramipex packets away in the rubbish. I can’t recycle them due to the foil on the back. I imagine if I really struggled with fine motor skills opening the tablets at all would be a minor miracle. They’re so hard and fiddly to remove, and once free of the packet very small and tiny. Even I often drop them through my fingers as I work them free of the plastic capsule. I guess someone thought it was a good idea. I bet they have shares in packaging. 

But back to science. Where would I be without science? God knows there’s little enough being done as it is around Parkinson’s. There is much noise about breakthroughs but what investment is really being ploughed into curing this horrible neurological disease? How can it be the world can throw themselves behind Covid-19 and create a vaccine in 12 months yet we’re still waiting for our desperately needed cure. I was told at diagnosis that I should expect to see a cure in my lifetime. While hope springs eternal I’m beginning to doubt any cure would be for me. Still I’m grateful for what I do have, and take my artificial dopamine and other things I don’t understand without question. 

You see; here’s the thing. My brain doesn’t work properly. It doesn’t do what it should to make my body work properly. I wish it were simply a case of mind over matter. How many times have I thought to myself, “come on, there’s nothing physically wrong with your leg / arm / back (delete or add as appropriate)” and attempted to get by without my meds for a bit longer. I try. I can achieve the task, but oh, how hard it is. I’m slower. My fingers don’t quite cut it, or my limp is hard to overcome and my hip will begin to hurt. In short, the mind is willing, but the body just won’t go along with my good intentions. It’s pretty scary when you realise you are, quite literally, trapped inside something that won’t do what you want it to. In fact, just writing that makes me pause, and blink back a tear. 

There is a shining light of hope – my meds! Yay! After about 40 minutes I’m almost back to my old self. Not quite as much as I used to be – but that’s another blog post. For now at least I am able to function almost as well as I once did. I don’t think too hard about the relavence of that statement. They’ll last for about four to four and a half hours. Then I need more. 

Which brings me back to the point. Yes, I did have one. I don’t know what’s in these tablets. I don’t know why they work. I resisted taking them at first, I resented taking medication at all. Why should I fill myself with that? What good will it do? But it gives me my life back, puts me back in control of what is mine. For a while at least. My body uses the chemicals and artificial whatever-it-is and then it’s gone and needs some more. I’m not building up immunity to it, I’m using stuff my body should be making on my own. I can also tell you this. When you’re not in control, when you can’t stop what is happening to your own person, this gives respite, relief, a little hope. Hope that one day science will provide the breakthrough we’ve all been desparetly waiting for. 

I’ll trust the science thanks. It’s all I’ve got to hang onto. Keep researching, Big Pharma et al, because we need you. 

Until next time.