It’s almost World Parkinson’s Day. It’s something big on my calendar yet I’m sure to most people it’s ‘just another awareness day.’ In the six years I have had this disease I have seen the Covid-19 pandemic sweep the world and an effective vaccination program created and rolled out worldwide. Yet the drugs I am given to try to control this thing are unchanged. All that’s happened is they’ve increased slightly.
My Parkinson’s has got a little worse but I’m still fighting. It’s a fight I fear I’ll never win. I don’t know why I wrote that. I know I’ll never win. That’s not a defeatist comment, it’s the truth. I can’t stop the degeneration. That’s what this whole thing is. I can retrain my body; I can work on my mental health. Ultimately today is the best I will ever be. Tomorrow will be infinitesimally worse. Those tiny, little increments creep up on you. You might not even notice until one day you realise bending down to pick something up feels harder. It’s slow. You discover once your meds kick in it’s easier. Ah. That’s Parkinson’s. I didn’t used to be like that before medication on a morning. It must have got worse.
The answer is always to ‘tweak’ your medication. More of this, less of that. Exercise. Endless exercise. I know exercise is effective but it can’t cure what I have. A friend with Parkinson’s told me they were recently at their neurology appointment and the doctor began to talk about DBS. We just looked at each other in horror.
For the uninitiated DBS is deep brain stimulation. Rods are inserted into your brain to help with symptoms around dyskinesia. If that sounds major it is. It’s rightly terrifying, horrifically intrusive, permanently scarring and worst of all, can’t promise to provide a long-term fix. It can be great, it can be ok, there is a tiny chance it can kill you.
However this piece is more around the issue that to my eyes at least, nothing much has changed. It appears that where I live in New Zealand the approach is to keep dishing out the tablets with the ever-present cheery comments that they won’t work forever. It’s that or brain surgery.
Seriously? Is this the best we can do? Where is the funding to research a cure? To promote more positive images of this hideous thing? I was told by the CEO of Parkinson’s New Zealand that the image used was their best option to garner donations. I was told images of healthy-looking young people don’t cut it.
I disagree. While this lie is peddled people don’t care about finding a cure. The assumption of the average person it affects are only old people who are so blinking near death anyhow what does it matter? Perhaps if they had some idea that it also cripples people with young families, women and men who thought they were approaching their forties in fine health, working towards the peak of their careers, they might have some more sympathy. They’d see themselves in the images, they’d read that Parkinson’s is the fastest growing neurological disease on the planet. Maybe, just maybe, they’d want to help.
Finally, I want to ask what of the funding these organisations take from government and the public? What are they doing to help people with this affliction? I know they have a large office in the capital city. That must be expensive. I know they employ a mix of people both with and without Parkinson’s.
I also know that in order to save money all community engagement people have gone, and when the nurse that covered our local area left, they were not replaced. I suppose the other nurse in the neighbouring area took up extra patients. I wouldn’t know. I never hear from them. Yet they claim my name as a patient they help without so much as a by-your-leave. They use their patient numbers to boost donations but what is done with the cash taken in our name?
What about the young onset Parkinson’s conference every now and again? Horribly expensive to attend, where I hear the best thing is meeting other people. The medical speakers looked impressive. I have no issue there. Then there were the snake-oil peddlers. The motivational speaker to help improve your attitude and positivity. Did he have Parkinson’s? No. The exercise guru. Did she have Parkinson’s? Of course not. I bet they were well paid. The monies raised aren’t being spent there, the attendance fee must cover the lot.
Is it spent on funding research? Finding a cure? Doesn’t look like it from this angle. I see lots of noise but no action. No impetus to improve, no real care for those they claim to help. I do see job protection, closed minds and an unwillingness to try new things. This World Parkinson’s Day I’m sure we’ll see more tin-rattling and sympathetic there-there-there.
Meanwhile I’ll just keep taking the tablets. For now, it’s the best I’ve got.
Until next time, Kitty. x
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