With these feet? – A spotlight on young onset Parkinson’s disease
There’s a classic line in the ’70s sitcom Porridge where Ronnie Barker playing Fletcher responds to the prison MO (medical officer) with the line : “with these feet?”
It’s fast becoming my catchphrase too
Gaynor Edwards, CEO of Spotlight YOPD
I used to quite like my feet and was partial to a bit of shoe shopping. These days I hate my little ‘trotters’; so often swollen and misshapen… This goes way beyond middle-aged body image. I’m practically at war with my own foot soldiers – engaging in daily battle. I’ve given away my shoe collection in a bid to disarm them; party heels at the centre of an arsenal used against me.
I now realise this massively painful cramp condition is called dystonia and can effect various parts of the body. A neurological rare condition in its own right, it’s one of some 40 or so symptoms for those of us with Young Onset Parkinson’s. Known (by those in the know) as YOPD – classified as a rare syndrome in Europe; yet waiting for North America to catch up, seemingly. We estimate that there are 7000 people* in the UK diagnosed under the age of 50 with YOPD, many with some genetic predisposition.
Once recognised, foot dystonia is a useful diagnostic tool – often a presenting symptom for YOPD. This classic clawing of toes is a giveaway; rarely seen in traditional age Parkinson’s except as a side effect of the meds. This unattractive symptom is accompanied by pain which some may describe as burning, others stinging – either way it makes a walk in the park anything but.
Dystonia is one of the ‘3D’ YOPD points of difference – along with depression and dyskinesia. Spotlight YOPD – the only charity in the world dedicated to representing those with YOPD – is using this 3D approach in their latest promo campaign in order to highlight that YOPD is a separate rare syndrome.
Of the three, depression is probably – for most – the only instantly understood symptom. By that I mean – at lest the word itself is familiar. In too many cases it is, however, dismissed early on as being caused by news of the diagnosis itself.
By the time any YOPD symptom appear the brain’s dopamine has been depleted by 60 – 80 per cent – with serotonin also impacted. Being deficient of the brain’s two happy drugs – how surprising is it really that we show sign of depression?
Again, this can be an early, pre-diagnosis symptom – as it was in my case. I was put on anti-depressives which three months later still had no effect, prompting another visit to the GP.
Dyskinesia is the third D and the tricky one – the one which I’m yet to experience first-hand and the one that concerns me the most. It is the side effect that has become a symptom and at its worst frightens, alienates and exhausts. I have seen this full-on dyko-inferno in many friends.
People with Parkinson’s rely on their medications to move – without them they are slow and rigid. We refer to the inactivity before the meds have kicked in as being ‘off’. When they start working it’s as if someone has flicked a switch and we’re ‘on’. When we have too much medication we often get dyskinesia – which I refer to as ‘over’.
Some clinicians consider this part of being ‘on’ and the meds working. Perhaps they haven’t seen dyskenesia in ‘full flight’ with its out-of-control irratic, jerking and flailing movements. I would call this state beyond ‘on’ ad into ‘over’. It is far more common in YOPD; moot point as to whether this is a result of impatient patient pill-popping in order to get ‘on’.
Many of the other symptoms we share with more typical older PD ‘patients’ but three Ds provide the point of difference in YOPD – and Young Onset Parkinson’s Dystonia, Depression and Dyskinesia certainly provide more accuracy that the word ‘Disease’.
For more information visit https://spotlightyopd.org/
* 7000 is a guesstimate based on figures in other western states where YOPD is approx 5% of all diagnosed under 50 years old with Parkinson’s. In the UK PD population of 145,000 that equates to 7250. No official verified figures are available.