Parkinson’s Awareness – Ask me a question! “Why don’t you shake all the time?”

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I thought Parkinson’s was all about tremor – look at Michael J Fox, he is moving all the time, so why don’t you look like that?

This is a very good question indeed and needs to be answered in two parts.  Part 1 – what is parkinson’s tremor, Part 2 – why some people writhe and twist

Part 1 – what is parkinson’s tremor

Tremor in parkinson’s disease (PD) is what most people think of when the disease is first mentioned, but not everyone with parkinsonism will have tremor.  When present, visible shaking can range from small movements up to fairly large ones but all at a regular six cycles a second.

Tremor is the manifestation of a misfiring of the signals from the brain to one’s muscles – and someone with parkinson’s tremor has no control over what is happening.  Not everyone with parkinson’s experiences visible tremor however (I talk about internal/invisible tremor here) but when we do, it is instantly recognisable because of its regular rhythm.

In the early stages, when other symptoms are less obvious, tremor is the one thing most of us try to disguise as much as possible.  For some reason a tremoring person appears to be perceived as truly less able in all respects (perhaps because we conventionally associate such shaking with injury or extreme fatigue or infirmity), even though the person shaking with parkinson’s tremor might not be that old.  Because parkinson’s tremor tends to be one-sided, certainly in the early days, it is actually fairly easy to disguise by putting a hand in a jacket pocket, clasping both hands together or, when sitting down trapping the hand under a leg.  Sometimes, though, the effort of disguise is a stress in itself which can make shaking worse!

Like most symptoms of parkinson’s, tremor is worsened by stress and as many people with parkinson’s have an overly sensitive “stress-o-meter” which can worsen or bring out visible tremor in the least stressful of situations for someone without the disease, tremor can be ever-present in public.  The person with parkinson’s may not feel actively stressed, but the body has somehow perceived a stressor to which it is reacting.  Known triggers for me range from crowds of people, noisy environments, and negative encounters through unexpected/unplanned events that BP (before parkinsonism) I’d have probably responded positively to, right down to something as basic as a home or mobile phone ringing.

So, while I don’t have very visible tremor a lot of the time, it is always waiting in the wings ready to perform if I encounter a situation my system deems “stressy”.

Part 2 – why some people twist and writhe

The name given to twisting and writhing is dyskinesia.  As I understand it, dyskinesia is not a symptom of parkinson’s itself , but rather a side effect that can develop when folks have been on parkinson’s dopamine replacement drugs for a long time,  or, too much dopamine has been taken regularly.  As Michael J Fox himself said, in the early days of his diagnosis he would have a pocketful of levodopa tablets and just pop one if he felt his finger begin to twitch – it can be very tempting to do this as the effect of medication in the early stages is relatively quick.

Parkinson’s specialists are expert at determining how best to modify drug treatments to obtain best results and these days there are a wide range of drug options.  If dyskinesia is developing, it is important to see your neuro to discuss what can be done as there is a fine balance to be struck between optimal benefit and  side effects.

As many of you already know, my parkinsonism was triggered/accelerated by anaesthesia in 2006 and at that time progressed so rapidly that I was started on parkinson’s medication within four months of first symptoms appearing.  From the early days, my neurologist explained the toxic effect of the drugs but said that we could adopt a “less is more” approach and I believe this has been why I have done so well – the neuro sets maximum daily doses for the different drugs and leaves it to me to tailor what I take and when I take it.  Prior to parkinsonism I was lucky in never having to take regular medications, so my preference is to only take what I need and…. so far… no dyskinesias!!

@joannekarma
#RCtheParrot

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jsbcoo7

Mostly housebound these days I keep engaged with the wider world via social media. I knit and crochet for charity (and yarnbombs!), keep tabs on the state of our blue dot and find inspiration from exploration here on earth and in space!

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