A letter from the CEO – but you can call her G

All things happen for a reason. That’s not to say all things happen necessarily for the best of reasons… but even a diagnosis of YOPD offers the opportunity to make your mark on the world for the greater good.

This is where we generally drop in a quote; something like ‘Be the change’, attributed to Gandhi.

The one thing you come to realise about the peculiar world of Parkinson’s is that it’s never predictable – so here’s a less predictable quotation.

“When adversity strikes, that’s when you have to be the most calm. Take a step back, stay strong, stay grounded and press on,” LL Cool J.

Wise words James – apparently it stands for Ladies Love Cool James, in itself not the coolest moniker but the quote is good advice, especially for those newly diagnosed.

Keeping calm and adopting a positive mindset is probably the best thing you can do for yourself and those around you when diagnosed. You could sob and rock back and forth in a corner, but wasting the good years feeling sorry for yourself is pretty pointless.   

This is where the stages of grief take over – as you mourn the future you thought you had. Many get stuck in anger or denial for years; we all react and process news differently and none of us know how our PD will progress. Some dwell on the past, others live in fear of the future – the only certainly we have is today – the day we are living now, which in itself can change from hour to hour or even minute to minute.

It’s interesting to run through the seven stages of grief and how it corresponds to a Parkinson’s diagnosis. One huge caveat… this diagnosis will undoubtedly at some point mean your life will change, it my even trim a few years off your life expectancy but it’s not a death sentence.

Some refer to it as a ‘life sentence’ and there are periods of time when perhaps breaking rocks in a prison yard may feel like more fun – but there is much you can do to help yourself and slow your disease progression. None of us know what life has in store, our world can change in an instant – as the man said, death and taxes are the only certainties.

Stages of Grief:

1. Shock – In terms of a Parkinson’s diagnosis the impact of shock really depends on whether you saw the diagnosis coming or not. For some people who have been struggling for years to get a diagnosis, perhaps considering worst-case scenarios such as motor neurone disease or brain tumours along the way, a Parkinson’s diagnosis can be a relief.

For others, of course, they had no idea. Why would they? Constantly told ‘it won’t be Parkinson’s, you’re far too young’, it’s the last thing they were expecting. This can sometimes be compounded by the manner in which the news is delivered. There are some shocking stories out there – especially more recent ones when lockdown isolation has meant no contact with a neurologist or a Parkinson’s nurse.

More than shock, perhaps the overwhelming feeling for many newly diagnosed YOPDers is loneliness. At that point you genuinely feel like the only young person to ever have received this diagnosis.

Dear reader – know this now… you are not alone. There are thousands and thousands of YOPD people out there, including some truly fantastic people. They’ve walked this path before, negotiated this tricky terrain – most are happy to mentor and guide the newly diagnosed. At the very least, they will lend you their map.

2. Denial – This is the default setting for many with Parkinson’s and they can get stuck in denial to the detriment of their relationships, career and mostly their health. This is, of course, the logical next step from shock with a stop off at ‘disbelief’ – because, of course, this doesn’t happen to you – this happens to other people. Remember to the outside world made up of everyone else, you are ‘other people’.

The sooner you engage with your diagnosis the better. Knowledge is power and you’ll find like-minded people out there happy to advise and support. Parkinson’s is often referred to as a journey – it’s not one best travelled alone.

Denial is one reason many YOPDers keep their diagnosis secret. Just the stress of this covert life can’t be helpful. Sooner or later the condition outs itself – usually around the five to seven year point.

Invariably a decision not to engage with your condition may well put you at a disadvantage. YOPD is still a learning curve and we’re still identifying and learning about the different types with different systems and different genetic predispositions. We are keen to identify this different causes. As with anything in life –  if you don’t understand the problem you’ve got precious little hope of coming up with the solution.

3. Anger – Forced by the reality of your symptoms to accept that such a thing has happened to you, the reaction is often anger. ‘No’ turns to ‘Why?’ – more specifically ‘Why me?’. Of course, the last thing an angry young Parkie wants to hear at this point is the logical response of ‘why not you?’

While this has clearly not been a fun ride for the person diagnosed – speaking from personal experience – it’s just as challenging a journey for their significant other, should there be one – and should the YOPDer have managed to hold onto that person up until this point.

Angry people are not fun to live with. Yes I know, we all know – you have Parkinson’s and you’re none too happy about it. Your anger is understandable and it’s appropriate and for those living with you… it’s bleedin’ hard work. Trying to support you and keep up with your symptoms and emotions, while putting their own wellbeing on the back burner, they invariably feel ignored, unappreciated and constantly wrong-footed.

That’s may seem like tough love – but I would urge all newly diagnosed to remember it’s not just you ‘Living with Parkinson’s.’

Hold on to the ‘Why me?’ though – answering that question is our mission.

4. Bargaining – In terms of PD, this is the urgent, often desperate, need to fix the situation – to cure yourself. Not always a bad thing, it might lead to taking up a fitness regime, going on diet, signing up to a trial or raising funds for a PD charity.

Where this goes wrong is when the desperation makes for being an easy target for scams and snake oil salesmen. Stem cell tourism has become common in recent years to the potential huge detriment of genuine research in the field. The much-awaited authentic treatments may suffer from negative results and reports from bogus ‘researchers’ preying on and profiting from vulnerable patients.

Desperation tends to over-ride the essential need to check facts. The importance of asking questions and doing your homework cannot be over-stressed in all things PD. People are only now just beginning to understand that YOPD is different from traditional PD and there are many genetic sub-groups of the conditions that fall under the YOPD banner.

Pair this bargaining with the obsessive behaviour that often results from dopamine agonist use and things can get a little out of hand.

5. Depression – Often a presenting symptom for YOPD, many younger Parkies may also experience anxiety and depression when finally coming to terms with the diagnosis. They may be more conscious of the stigma of the condition, perceived loss of control and the impact of dyskinesia on self-image. Feelings of isolation – as a young person with an elderly condition – and fear of future physical decline can also understandably lead to depression.

Anti-depressants work for some – although be prepared to go back to the doctor to try a different type if the first suggestions don’t work. Counselling can be hugely beneficial if you find the right therapist. Especially post-Covid the NHS waiting list may take a while for you to reach the top and you’re unlikely to get a choice of therapists. Going private or finding a YOPD mentor or both will provide more instant help.

6. Testing – Much like bargaining, this testing period can be positive and proactive. Less desperate and more controlled, there are signs of hope and a desire to make a difference. This is where hopefully the newly diagnosed will claw their way out of their pit of depression and peek into the light. It’s where people decide to seek help or help themselves. This could be when you decide to take up running or even launch a charity (There’s a bonkers idea – Ed).

7. Acceptance – Moot point if this final stage should be called acceptance, resignation, resolution or something else – suggestions welcome. These can all sound a little lacking in hope. For all its complexity and perceived lack of progress, YOPD is being recognised and genetic factors, more prevalent in this group, do offer something concrete to work with.

Accept the onset but address the mindset is perhaps key. It’s easy to see the glass as half empty. Most YOPD are less tremor-dominant so at least have a chance of holding on to the glass in the first place. Appreciation of small victories and a sense of humour are always helpful.

The more you dive into the murky waters of the Parkinson’s World the more overwhelming it may feel – especially when you realise some are driven by ego and money, rather than in the best interests of those with the condition. Few will have the experience, knowledge and vested interest of the YOPD patients. More to lose as they battle the condition over decades – but so much more to give and to gain, by being involved.

Can you make a difference as an individual?

We all have a role to play in solving this YOPD problem. Can you make a difference as an individual? We all can – as individuals – we just need to work out what our particular role is. To succeed make it something you’re good at and you might actually enjoy – do your research, talk to people, know your subject and don’t be afraid to admit your mistakes. Cut yourself some slack – allow for apathy and fatigue. Manage your expectations of yourself and your fellow YOPDers, be kind – to yourself and others – and be positive.

Matt Eagles has had Parkinson’s since he was seven years old. He has greater insight into the condition at very close quarters than probably anyone else out there, with some 40+ years of experience. Life is not easy but he radiates positivity and why?… Because he realises you get back what you give out. His positivity is reflected back to him by most people he talks to – and as a result his symptoms improve.

In the words of LL Cool J “Be the change that you wish to see in the world” … oh no, hold on – that was Gandhi.