+You’ll get mixed up with many strange birds as you go.

So what is Parkinson’s anyway? And what is it like to have it? These are great questions, thanks heaps for asking! What to ask is such a fraught business isn’t it? Sometimes, at work, I notice people glancing at me sideways as I lumber past …its like I can see a thought bubble with a question mark in it hovering over their head. People often say “Are you limping?” Or “How is your health?”

But, I digress. So, what is this Parky thing? This is my ‘Extremely Rough Guide to Parky’, based on what I know, which is, at this point, not a lot. There is so much to know, so much science going on. I’m not the world’s expert, so bear that in mind.

Parkinson’s is often described as “chronic”, which basically means it goes on all the time, and it’s incurable – so its for life. The word “progressive” or “degenerative” is used as well, which means it gets steadily worse over time. Apparently also its common. The New Zealand Brain institute estimated in 2017 that there are about 10,700 kiwis with Parky. But its not that common to have it young – about 10% of Parkys are under the age of 60.

Parkinson’s is basically when, for whatever reason (as far I as I know, no-one is really quite sure exactly what causes it) neurons that produce and use dopamine in your brain (and also in your gut and other places) start to die off. The death of these neurons and the resulting loss of the dopamine chemical signals is what causes the Parky symptoms. Parkinson’s isn’t the only thing that a dopamine deficiency causes. The most common other things are depression, schizophrenia, and psychosis (like hallucinations or delusions). When it is Parkinson’s there is a huge list of different symptoms you can get – some you can see (tremor or shaking, slow movement etc), and some that are invisible like depression, anxiety, constipation, rigid muscles, etc. Every single person with Parkinson’s has a different mix of symptoms, and some are quite badly affected, others less so.

So what is this dopamine thingee? Dopamine is a type of chemical known as a neurotransmitter. Neurons in your brain use neurotransmitters as one way to communicate between themselves and send signals throughout the brain. Dopamine is responsible for a bunch of different stuff. Dopamine in one part of the brain helps us initiate movement and speech – so this is why people with Parkinson’s have slow movement or experience “freezing”. I haven’t had any speech problems yet but you might have noticed this in other Parky’s from time to time – Mohammed Ali couldn’t talk very well towards the end. The slow movement is like – you’re trying to walk along but you’re literally having to talk to your body and say “Lift your foot up, move your leg along, tilt your foot, land with your heel down…”. Or in other words you can walk but its hard – you can’t rely on the automatic sense you used to have about how to walk, you have to consciously think about it, break down the actions, and try to do it. Often you don’t naturally swing your arms, so you’re having to tell your arms to swing too. This is what I call my robot walk – it looks strange and forced and unnatural. Or the other kind of walk I get which is common is a shuffle – its when I’ve gotten impatient with walking slowly and tried to get some speed on, but my stride doesn’t happen properly, it just somehow devolves into tiny little steps. Doing this fast is brutal because you often get somewhere quicker but can’t stop, as you don’t have a lot of control over it. One time I shuffled fast, and I was a bit bent over and my arms at my sides, and I, well, I head-butted the wall. As a means of stopping. Not the best method I have to say!

Freezing is literally when you’re trying to move, and want to, but your body is not responding. Often it happens when you’re walking along and the ground starts sloping up. Or it can happen in a doorway. You’re trapped in a moment and you’re thinking, “how do I do this again?”

Dopamine in another part of the brain floods into the brain when some good happens – you get pleasure out of doing something like eating chocolate. The dopamine release tells the brain “that was awesome, lets have some more!”. It’s what motivates us (you’re expecting a reward from a behaviour), its a reinforcer (which is probably an evolutionary thing that makes us eat and drink to survive, but also what can get you addicted to drugs and other bad stuff). Drugs are bad, ok? Lowered dopamine leads you to lose pleasure in stuff though. It also affects your mood, your ability to sleep, your memory, and ability to concentrate.

The good news is, although you can’t get rid of the symptoms entirely, you can mask them some of the time, with medication. Lots and lots of it. This is because some worthy humans discovered that you can give the brain synthetic dopamine, and the brain will work again reasonably effectively for a time period. This synthetic dopamine is called levodopa. There are heaps of different brands of drugs with different combinations of levodopa and other chemicals, and other drugs that do different things. Every Parky is probably on a unique cocktail. But basically you take your levodopa, lots of it, all the time (I’m on a three hourly schedule daily and have a long lasting one at night that gets me six hours sleep time). I also take a range of other pills – stuff for anxiety, melatonin on the off chance it helps me sleep, that kind of thing.

Levodopa is awesome, but not perfect. For one thing it has to pass through the gut into the blood, and from there onto the brain. So from what I understand only a very small proportion of it gets up there. They’ve discovered recently there are several kinds of bacteria in your gut that pinch the dopamine and go off to do God knows what with it (party?). Also your brain prioritises protein so if you’ve eaten a big protein meal shortly before taking the pills then you won’t get much relief from symptoms until your next dose. This has caused me to eat very differently, limiting protein in a large quantity. I have to get it in small amounts throughout the day. Last year I lost about 12 kilos without knowing why, and it might be partly to do with the protein thing. And levodopa doesn’t last that long as well, so you have to take it constantly. And you can’t take it with food, or not too much food, because it doesn’t absorb very well then. So your whole day becomes this giant clock watching affair.

The other thing is levodopa brings with it a whole bunch of potential side effects. Mine was primarily nausea. But you can also get dyskinesia which is uncontrollable movements. This is what the internet teases Michael J Fox for. Or one of the things. It can also cause you to get addicted to stuff easily.

All in all I’m a big fan of levodopa, and I hope it keeps working for me as long as possible, with as few side effects as possible. What is incredible to me though is the effect of exercise on my symptoms, and how much better I feel the days I do intense exercise. I have committed to do as much as I can every day now – I prioritise it first. Yes, this sounds radical, I’m putting myself first. But actually it is for the benefit of the whole family that I stay as good as possible for as long as possible. So any little bit of time I have I do something – LSVT BIG exercises, some karate, some jumping on the tramp, or dancing, stretching, I might run down to the road and back, or walk up and down the hill on our farm, bounce on the tramp, maybe do some pull ups on the monkey bars. Karate and BIG are the foundation, walking practice is important too, and then basically anything else that is fun and ticks the intensity box. This not only helps my body, it helps my brain, and my mind too. It is critical to my strategy for living with Parkinson’s.

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