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 had two further meetings that 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 well 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 promptly 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 in the waiting room, all several decades older. Spot the YOPD ‘square peg’ sitting uncomfortably in a ’round hole’ – and it’s not just the pain of dystonia.
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.
Apparently, that YOPD had different symptoms to traditional PD was not news to our YPA hosts. PUK – then called The Parkinson’s Disease Society – had their then head of comms submit an article to Nursing Times back in 2003. It’s a nicely written comprehensive piece that basically concurs with the Orphanet document.
The article’s conclusion reads:
“The management of young-onset Parkinson’s disease is complicated. It is essential that young people and their families receive appropriate support to meet their psychological, emotional and social needs.
“A multi-disciplinary approach is vital, and the nurse should act as a link and a support to other professionals, such as physiotherapists, speech and language therapists, occupational therapists, dietitians, podiatrists, social workers and psychologists.”
The full article can be read here.
The main point worth highlighting again is the date of that article. That was no typo – 2003 it was penned… 15 years ago. And yet Parkinson’s UK – the people responsible for writing that article 15 years ago have only just added a page on Young Onset to their website. They appear, however, to be renaming it, so you’ll have to search for ‘Younger’.
The page – which happily name-checks and links to Spotlight YOPD, along with other young parkie charities and organisations, makes no reference to YOPD being a separate condition. They make no reference to Orphanet or their own article from 2003.
Spotlight YOPD wants to work with other charities. We work very well with some other charities, based on trust and mutual respect. Gaynor still attends the YPA, either in person but usually by Skype. Of the positive Parkies featured in the photograph, only two attended the last meeting (both by Skype). Our expectations have been lowered; no one questions why so many original members no longer attend. New guest Parkies are brought in to fill the seats – fresh faced and full of hope.
If only MJF could lend us his DeLorean, we could pop back to 2003, when as the UK’s only PD charity they seemed to be far more representative of all sectors of the community. It’s ironic that their shortfall leads others to set up other charities, which they then view as a threat – however small (isn’t it Andy?)