This is dedicated to anyone who is surrounded by a small fringe element of unfortunately foolish, selfish, and otherwise ignorant family and supposed friends. A couple of friends mentioned in a discussion yesterday that they had been accused by ex-partners, kids, and others of faking it. I am sure people have asked the same about my symptoms once or twice, and it is time to address it. As I write below, it is unhelpful, extremely patronising and frankly offensive. In the 0.000001% of cases of someone seriously trying to fake it, they have really chosen the wrong disease.
In a previous article called “Am I imagining it? Seriously?” I actually wrote the following: “Please note that I am not talking about the few [insert word of choice] people who say to PD people that they are faking it. I have had it a couple of times, and I know others have had it. I won’t merit this with a response. However, in a more subtle form, I have seen many try to dismiss it or empathize badly by saying it is just old age. Sadly it is not, however…”
Now sadly, I am addressing this [insert word of choice] group. I am NOT writing to the millions of carers, friends, and family of people with Parkinson’s who find it difficult to comprehend, understand, and struggle with the constant change and dynamism of the disease and who get frustrated by it – that is normal, and you are good people dealing with difficult circumstances – this article is NOT directed at you!!!!!! Truly!!!!!!!! You all get A* for your support and effort and don’t really need to read on.
To those who believe someone you know is faking it…
If you want to pick a disease to ‘fake,’ can I first say that Parkinson’s (at least the one I know) is in so many ways not the one to choose…with it comes a massive barrage of truly unpleasant symptoms, one on top of the other from little things like loss of handwriting and smell (I actually call these minor despite them destroying pastimes like enjoying whisky, which were very important to me), to a tremor for many (not significant for me) and sudden body movements which are really not pleasant, to freezing, being unable to walk unaided, choking suddenly, and the fun of falling at random moments.
More than that, it comes with a life sentence and the added benefit of getting progressively worse. That means to the fakers out there, once you pretend you have it, you are locked in for life, and you have to make it look ever worse…so prepare your nappies and wheelchair because you are in for a lifetime ride (although recent surveys show that it has a significant impact on life expectancy, so I suppose that is some relief). As I wrote some time ago…
In this regards, a well-known study, one of whose authors is Professor Bas Bloem, one of the world’s leading Parkinson’s experts (which you can access here), is quite shocking. This study shows that those with PD diagnosed at 55 will, on average, live much less. In men the difference is estimated at 11 years less and 6 for women. (You can also listen to it on a podcast called 2 Parkies in a Pod – Apple or Spotify)
So as the popular adage goes – Just because you don’t understand it doesn’t mean it isn’t so.
It is a cheap shot to throw at people who are truly suffering. People with Parkinson’s have more than enough to deal with without being emotionally abused by being called fakes.
I am sure it would be preferred if our heads were shaved, were forced to be bedridden, or something simpler for your mind to comprehend, but Parkinson’s doesn’t work that way. It is a disease that hits the central nervous system of the brain (the Operational Center of the body, etc.) and causes a shortage of its primary fuel – dopamine. Without sufficient dopamine, the brain is unable to transmit signals to correctly coordinate movement and also has the same impact on mood and other critical functions. It is unpredictable and evolving.
It is like a plane that starts to run out of hydraulic fluid or whose power runs low because of a lack of fuel – you are never quite sure what the first system to be impacted will be – the lights, the wipers, the steering, etc. – it is unpredictable, but trust me when I say that no one wants to be sitting on that plane.
So, to those who think your friend or loved one is faking it – can I suggest that you give it a little thought and consideration and entertain that maybe they are suffering and trying their very best to continue to operate as normally as they can in very difficult circumstances. Parkinson’s is a roller coaster that changes on a dime (exactly due to the nature I have described above). To the person with Parkinson’s, it feels weird and at times surreal (the moments I freeze I wonder truly what is happening), but please don’t think the person is faking it.
To anyone who is faking it…you made a really bad choice!
To those with Parkinson’s – all I can say is that in some ways, it is a compliment. It shows that you are not easily being beaten by the beast – you are not taking it lying down. It shows that you are trying your best to carry on a normal life despite the symptoms, and if people see that as ‘faking it,’ it is much, much better than giving in to their image of an ill person (wheelchair, etc.), which comes when Parkinson’s, after many years, gains the upper hand. I say keep living, keep fighting, keep giving people pause to think that you ‘don’t look so bad.’
