Parkinson's disease

I Forgot

image of tablets in a bottle and a blister pack

At times like this I detest Parkinson’s. I’ve been remiss. I forgot to take my tablets. I’m lucky, my tablets work well, but I took the last lot at 11.30am as scheduled and I forgot until now, 07.00pm to take the next lot.

I was distracted, I was eating dinner with my family. It’s Easter, we made chocolate cupcakes with buttercream and tiny chocolate eggs for dessert. God knows how difficult it’s been to find Easter Eggs this year. And I just forgot.

Bitter Little Pill

And now my arm is heavy, as is my neck and head. I hate that. I mean, movement is coming back to me, even as I type this I’m feeling better. However, it’s that awful realisation that despite all the smiling, all the laughter, all the “hey, let’s be positive!” I can’t actually cope without taking my pills. Without my medication, my limbs feel strange, like I’m excessively tired. I feel that my body is failing. I’m working out every day. I’ve recently got into yoga, and it’s helping, I can feel it. Despite this, None of it means anything without my pills.

I’m a woman of science. I believe in medication. I know that they work and they’re doing me good. But the knowledge that you are reliant on something you cannot control is really difficult. There’s been a worldwide shortage of the drug Sinemet. Nobody cared of course, because it’s only people with Parkinson’s, and we all know that it only affects the elderly. So it’s no big deal. There’s a generic alternative, it’s not bad, so what are we complaining about?

So Close, Yet So Far

We complained because despite all the platitudes about it being ‘almost’ the same thing, it isn’t the same thing. It doesn’t work quite so well. When you’re only in your early forties with a young family, this is a big deal. But it’s only people with Parkinson’s. We know that it’s only old people with that, so here we are coping with generic, not quite to the same standard, medication. I can’t control what’s happening with that, and it’s scary. Because I need it to live.

I’m also unhappy because I can only obtain my other medicine in packages that contain one month’s supply. One month. I have an incurable disease. These tablets help my existing dopamine cells continue to work. They’re not beta-blockers, painkillers or diazepam -type things. They’ll make your dopamine cells (those that are left in my case) continue to produce the kind of dopamine that controls movement. Yes, there is more that one kind of dopamine. But despite this, the government, Pharmac, whoever it is, I’m not sure, thinks that it needs to be restricted to one month at a time.

I only ever have enough medicine to survive and work properly for four weeks.

Time Limits

We’re in the middle of the Covid-19 pandemic lockdown in NZ. How the heck do you think I feel knowing that there are mass shortages of everything, and I don’t even have more than enough pills to help me function like a normal human being?

I can tell you my pills have now kicked in and I feel almost normal again. I’m exceedingly lucky. Many people with Parkinson’s are much worse than me. I fight it as hard as I can through my hated exercise regime. But I despise this disease. This thing that tries to take me down. That wants me to curl up and waste away somewhere.

My future is uncertain and that scares the living daylights out of me. I want to climb mountains, to ride my bicycle, to run, to jump, to visit far-flung cities and the most important thing: live a healthy long life.

I can’t do any of that without medication. I’m relived and lucky I can obtain it. I’m sad that my life (my quality of life that is, but who wants to sit curled up in a corner for the rest of their life?) literally depends on me remembering to take it.

I know. I’ll be less useless and remember. Until the next time I forget. 😊

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