Shake to undo

Pharma’s Chris Henry is back as he organises, owns and observes his Parkinson’s disease while life goes on

When I was asked to write my first article – ‘Learning to make cocktails’ in the Feb/Mar issue of this publication – I figured it would be a one-time thing, especially as I went from early childhood to present day!

What else is there to share? As it happens, quite a lot. Last time I spoke about the diagnosis of Young Onset Parkinson’s disease (YOPD), how this presented several day-to-day challenges from securing a new job to pre-emptively explaining my outward symptom presentation to my clearly concerned healthcare professional (HCP) audience.

I was inspired to write this article by my day spent in London for World Parkinson’s Day on April 11. Fun fact: there are over 150,000 people in the UK currently diagnosed with PD and it is the fastest growing neurological condition globally.

Quick shout out to my company Grünenthal and the leadership team who allowed me the day off in support. Thank you – that meant a lot.

I met up with about 300 or so other ‘Parkies’ outside Westminster to get the message across that we are here, and we need to be heard. It was honestly the first time I had engaged with other PD-ers and I found it oddly reassuring to find that not only was I not isolated in my illness, but many have the same positive approach to their PD as I do.

As I chatted to what are now, I guess, my new PD brothers and sisters, a common theme kept coming up along with the usual variety of symptoms, pain, movement issues, exhaustion, challenges around appointments etc – and this was the conflict between modern life/technology and PD.

The frustrations this brings. The way it makes us feel. The constant reminder that we are not 100% okay 100% of the time. The hard truth that sometimes we can’t do things like we used to, and that we might just need some help.

I have always been an early adopter of technology especially in a professional capacity. As a marketer I loved the flexibility to tailor current and future messaging thanks to the instant feedback electronic materials offered us.

As a Key Account Manager, I find the interactivity of e-materials so much more engaging than the old fashioned A3 presenter or the fancy paper sales aid that you needed a degree in reverse origami to use effectively! That was until my YOPD diagnosis.

Everything I’m going to mention in this section will be, for most of you, something you do subconsciously multiple times a day. For me these days it’s no longer subconscious and something I am very acutely aware of. Here’s the tech and functionality that’s trying my patience!

• Touchscreens – frankly a nightmare as having a slight tremor means sometimes it’s fine and at other times, I’ve opened the sub core functions of my i-device with no clue how!
• Face ID – funny on good days as I try to keep my face and device still at the same time, annoying on bad days thanks to the famous Parkinsonian expressionless mask or dyskinetic facial twitch
• Swiping – the simple swipe that moves a scroll up, down, left or right. I now scroll with either micro swipes thus taking forever to get anywhere or big flamboyant swipes, the sort my aged Gran might make
• Typing – on a regular keyboard which results in lots of double/multiple tapped letters or increasingly words with chunks missing from them as I miss out several letters. The red squiggly line under spelling mistakes is a semi-permanent feature these days
• Typing – on devices, see touchscreens above!

I don’t want you to think I’m making light of the situation, I’m not but honestly if I don’t try to make it a little bit funny, I might just start to not bother and what then?

Parkinson’s Disease should, in my opinion, not be called a disease but either Parkinson’s disorder or, ideally, Parkinson’s syndrome. It has so many compounding factors, so many different challenges to all those affected.

This was so evident in London with so many different symptoms but scarily so many similar challenges around getting the care and support we feel we should get.

For me, micro movements are the main challenge physically – typing, writing, touchscreen use etc. Macro movements are still pretty much there – I can drive, exercise, play sport, although my golf game is taking some getting used to (to be clear it was never good, but now I have an excuse!).

What is interesting for me is when engaging in these macro activities my symptoms pretty much vanish. However, when trying to type and my fingers are not playing ball, I want to smash things up and dictate everything going forward.

Bringing me nicely to the wonders of speech recognition. To say this is a mixed bag of results is an understatement – when using WhatsApp for example or i-messages the speech to text is not too bad.

Generative AI is much better and more intuitive of course, and I am playing with that now, seeing how it lands with speech recognition for longer word documents, although it still has blips and it is no use in things like Excel or PowerPoint.

In these apps, I spend more time guessing the command whilst then seeing my guess get written on the page as ‘full stop new line ffs’ or funnier still it recently dictated a random Siri interaction caused by a touchscreen whoopsie.

Day-to-day these interactive issues are a real pain in the proverbial and I have struggled to explain this – so writing this, oddly enough, although hard work, it’s also kind of cathartic.

The physical effort to actually sit down and type hundreds of words or so involves timing it right with my meds in terms of peaks and troughs. Obviously, the aim is to minimise these highs and lows, but PD doesn’t listen to ideals and simply runs its own race.

• Trough = not quite enough dopamine on board so clinical effect diminished and so are the chances of typing anything legible. Cognitive function gets a bit varied and doesn’t help a narrative. In all being OFF is hard and incredibly frustrating not only for me but also those around me
• Peak dose = I can type reasonably well but will often double or triple tap letters whilst my head twitches like I’ve been plugged into the mains. However, I can think straight and get down what I’m thinking
• This is the point in my medication roller coaster when my kids refer to me as ‘Funkopop’, which, for those not down with them, are modern versions of bobblehead toys. The simple and brutal truth of children.

I named this article ‘Shake to undo’ after an Apple feature where you can shake your phone or tablet to undo a recent action, a bit like CTRL+Z on a laptop. I had to turn this feature off for obvious reasons, but it did get me thinking.

The sheer amount of modern tech that involves touchscreens – how will I cope going forward and what do I need to get the best out of this increasingly tech reliant world? The answer is a mixed bag of what ifs and don’t knows.

So, as I near the next little rundown to trough levels I’ll leave you with a little thought to ponder:
As a Key Account Manager, I spend every day talking about patients and how we in our illustrious industry have patient-centric solutions that our HCPs can offer their patients.

It is absolutely right to put the patient at the heart of what we do but, as a small ask, try not to dehumanise but rather personalise – remember patients and HCPs are people too with emotions, hopes, fears, needs, constraints and pressures.
I never thought I would be a PD patient with a chronic condition and I truly hope my industry comes through for me, but I’m human and there are times when I fear it may not.

Chris Henry is a Key Account Manager at Grünenthal. Go to gruenthal.com