A personal perspective of living with Parkinson’s Disease by Graeme Davies, DCS Support Accountant, Norfolk and Suffolk NHS Foundation Trust.

The working title of this piece was originally called “Why I didn’t want to write this article… (but did anyway)”. To give that some context, I have now been asked three times to make a presentation on how my experiences of having a diagnosis of early on-set Parkinson’s Disease impacted (and continues to impact) my working life. Strangely, the presentation “debuted” in an online national NHS Finance inclusion conference, was followed by a similar regional level online conference, and was finally delivered in person to my own finance team colleagues at a recent team away day. (I’m sure most people do it the other way around.)

I have been truly humbled (and genuinely surprised) by the positive reactions and responses the presentation has received each time. But in no way whatsoever can I claim to be some sort of “disability spokesman”, and I thought I had nothing new or interesting to add on the subject when I was approached to write this. What I didn’t want to do was just re-hash the bullet points in the presentation. Which is why I was a little reluctant to put pen to paper when I was approached to write this. However, after careful consideration, I realised that actually the experiences didn’t (and don’t) end with the closing slide to my PowerPoint, and that is what I would like to focus on.

One thing I wanted the presentation to do was to reflect my natural flippancy (actually quite important in my “coping strategy”), so I apologise in advance for the fact that I have taken a similar approach to this too.

The first half of the presentation gave a more detailed overview of what Parkinson’s is, what the range of possible symptoms are, and what the possible side-affects of my medication could be. I will condense about 10 minutes worth of slides down to just say that my illness is a neurological condition, where my brain doesn’t create enough dopamine to properly control some of my motor and non-motor functions. As a result, I suffer from rigidity on one side of my body, can struggle occasionally with fatigue, have appalling handwriting, and can sometimes be slow of movement and speech.

However, I am aware of 3 important things about the above. Firstly, for the last decade, I have only “suffered” mildly with my condition. I am deeply aware that others with Parkinson’s, or with other neurological illnesses (such as MS or MN) or even with disabilities in general, face far worse than I have done to date. Secondly, I am aware that there are many other known symptoms of Parkinson’s that haven’t so far affected me, that can and do impact on other people with the illness. Given both of these points, I am acutely aware that I am not qualified to speak or write on anyone else’s behalf, and I won’t ever claim to. Thirdly, that the fact I have had it comparatively easy so far is no guarantee that I won’t myself deteriorate or display further and different symptoms in the future.

Having laid the groundworks, the presentation moves on to me explaining my own psychological approach to managing my condition. What I found both (positively) surprising and interesting was the fact that most of the feedback and questions I got after all 3 sessions were about this aspect. When it comes to my mindset towards the illness, for the most part, I try to ignore it or I try to laugh about it. I accept that it will sometimes limit what I can do, but I am determined not to let it define me as a person.  

With the national conference in particular, this sparked off a whole debate in the Teams Chat about what would and wouldn’t constitute inappropriate “humour”. In fact, a lot of the managers on the conference were surprised that someone with a disability seemed to be saying that they felt that being an occasional target of some “office banter” was actually a help not a hindrance. But the whole point is that I was commenting on my own personal situation and outlook; for others it might have a negative impact. I wasn’t advocating tearing up safeguards in HR policies and guidelines, and I do see their dilemma. However, I think the specific language used is key to what I would and wouldn’t find offensive, and more importantly, no one should presume what someone with a disability feels. Much better to ask us individually beforehand, I think. The fact that my comments had challenged their thinking though was something I found intriguing. And that applies to all 3 times I presented.         

Which leads me onto my next observation. I think those involved in the “banter” debate were all genuinely trying to the right things by their colleagues. But what really made an impression on me was the open-mindedness and willingness to tailor their approaches going forward that was shown.  It’s the same attitude I have encountered from all of my managers (and service managers too) at all levels within NSFT, and I can’t thank all of those enough for the support I have received over the past decade. A point I was more than happy to make in the presentation (with specific good practice examples). In fact the handful of (minor) negative experiences I have had seem to come about when people try to apply “one-size-fits-all” approaches to situations. These were also covered in the presentation.

Whilst I was a little bemused by the reactions to the idea of using humour as a means of coping with my illness, it does distract a little from what I felt was the main point about my mindset. The determination to be defined and remembered for what I do (in and out of work) and how I treat others, and not for the fact I have Parkinson’s. Likewise, as stated in the presentation, I set myself and expect to maintain high professional standards, and I don’t want to ever hide behind my illness on the odd occasion I don’t perform at that level.    

Which also brings me onto my last specific observation on the process and impact of doing the slideshows. Although only a small part of the presentation, I want to reiterate that my experience of work isn’t something given to me or done by others (managers in particular). I have an obligation to myself and to my team and to my wider Trust, to take responsibility too. I have had to adapt, and I will probably have to continue to adapt in the future. Yes, Trusts have obligations and duties to disabled staff, but I think a lot of focus (particularly around policies) assumes that it is a one-way process. It shouldn’t be, and I aim to make sure it isn’t in my case.

On reflection, I think my central message is that if you work with or manage someone who has a disability (any disability, be it physical, mental or learning), then please remember that they are first and foremost an individual. They will have had their own experiences and will have developed their own outlook and approach to their conditions, so don’t presume things “on their behalf”.  And be flexible to the idea that their experiences, outlook and needs may well change over time. Without realising it at the time I did the presentations, I think that has always been the central message I wanted to give. I actually think it’s an important message too, which is why I ultimately relented and wrote this.