On the day Tom Isaacs’ personal battle with Young Onset Parkinson’s came to an end in summer 2017, more than a dozen young Parkies with their own battles to be fought met in the offices of PUK.
Some were supporters of the main Parkinson’s charity in this country, founded the year after Tom’s birth. Others represented their own charities and organisations. Together we were the members of the Younger Parkinson’s Alliance.
The group was outspoken; it was transparent. While facilitated by PUK; it was clearly owned by those who had the condition. The enthusiasm and positivity of the group was palpable. We had all been here before, as had many young Parkies before us – but this time there was a trustee chairing the meeting… and this time we thought ‘they’ might listen.
We have had two further meetings in the summer, although – as with lacing up your trainers – all things PD take longer than we would hope. The enthusiasm of the group was sadly not appreciated or managed by the hosts, the numbers dwindled for many reasons* and even the chair struggled to find availability in her diary.
* The problem with holding a day-time meeting for YOPs – also known as working age PWPs – is that they tend to spend most of their time during the week working. While the current benefits system has such a limited understanding of PD – let alone YOPD – this need to work and earn is unlikely to change any time soon.
Among the diminishing group there’s still lots of talk of ‘working together’ and every so often there is a glimmer of hope and even a minor breakthrough. Perhaps there’s now an understanding of a previous misunderstanding… We don’t need to gather together under a charity brand – PUK, CPT, Spotlight – we already have a brand. It’s simply YOPD. Dig out your diagnosis letter, if it says ‘Young Onset Parkinson’s Disease’ you have automatic membership.
Interesting that often neurologists specify a ‘Young Onset’ diagnosis and yet we’ve all been led to believe it’s the same condition as traditional aged PD. We’re told that everyone’s PD is different and yet we’re lumped in with everyone else. In many instances your YOPD diagnosis gets you an appointment with a general Neurologist, not a PD specialist, and often a Geriatrician. How does that sit with people in their 30s? Probably as comfortably as they sit among their fellow patients, all several decades older. Spot the YOPD ‘square peg’ sitting uncomfortably in a ’round hole’ – and it’s not just the pain of dystonia (which tends not to effect older PWPs).
We know YOPD has its own challenges with us in the prime of our stressful lives, bringing up kids, climbing the career ladder and so on. We know we have 30 or so years to live with the condition. We know sooner or later the oral medication will stop working and we’ll have to look to advanced therapies.
And then – one day, suddenly, Google delivers a credible document that says YOPD really is different: “The predominant initial motor symptoms include rigidity and painful cramps which may be followed by tremor, bradykinesia, gait complaints and falls. Compared to PD, there is a lower risk of developing falls and freezing of gait but a higher risk of dystonia, motor fluctuations, and levodopa induced dyskinesia (LID).
“YOPD patients report higher prevalence of non-motor symptoms including apathy, anxiety disorders (including panic disorders, generalised anxiety disorder, and social phobia), depression, psychosis (hallucinations) and behavioural disturbances (agitation or impulse control disorder).”
So, here’s a perfect action for the YPA – secure an understanding that YOPD is a separate condition with specific symptoms and particular lifestyle needs. In short, we should be viewed as a long-term investment, living as well as we can with the condition for the next 20 or 30 years, in lieu of a cure.
There’s a growing acceptance that genetics play a role in YOPD. More genetics testing is going on – but not enough and why not everyone with YOPD? If you haven’t already been invited – go volunteer for the 100 000 Genome project. It’s a simple blood test for those with ‘rare diseases’ – and as a Young Onset PwP you should have been invited – probably through your neurologist. They are collating blood now, in the knowledge that some very exciting technology is coming through in the next few years. Centres can be found throughout the UK – check the link and see map.
Having been asked by the YPA to read the tome that is the new NICE guidelines to PD, we skimmed through the 2017 publication – and looked at the ‘scope’ to see what was supposed to be covered…