Am I imagining it – not am I faking it!! 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…
At each stage of the Parkinson’s journey given the strange and seemingly endlessly wide variety of symptoms I have sometimes honestly asked myself “Is it real”? In some strange way – am I imagining it?
Featured below is the results of one of a number of surveys and the nature of symptoms is really so broad but fully consistent that it is a disease which attacks the messaging system of the brain. (This survey is from MyParkinsonsTeam – an excellent resource site)
The popular image of Parkinson’s – certainly the one I held naively before being diagnosed – was that it was simply about shaking and tremor. Anything else was not PD. How sadly wrong I was. It truly impacts such a wider spectrum of the body. I know for myself that before the Produadopa/Vyalev pump I had pretty high scores in 3 of the 6 categories in the picture above (Balance, shuffling gait and freezing) and was developing in two of them.
So, Am I imagining it? – This lack of education led me on a number of occasions to wonder if I was seeing things that were not there. Some examples.
Prior to diagnosis – My handwriting went, then my right arm didn’t swing and then a number of other things progressively kicked in. I remember a moment of realization that something was clearly wrong although I truly had no knowledge of the word Parkinson’s. I thought maybe a mild stroke. Just something wasn’t right. Eventually I went to the doctor assuming it was fatigue, carpal tunnel or some combination. When the GP asked me to touch my hand to my nose and I couldn’t do it with my right hand side- we knew it was serious.
On each new symptom – Whether it be choking, balance issues, shuffling and especially freezing – always the same. Surely it can’t be real – I am not seriously freezing, surely I can move my feet or hands? It isn’t a real fall. Choking surely isn’t related. Each time I doubt myself or deny it for a while before my self doubt gives way to a different set of thoughts.
The paradox – There are days when I can hardly walk and need a walking cane but yet I can compete at Table Tennis (still often losing of course 🙂 ). There are days I can’t balance but I can run 3k. It is a very well known yet strange phenomenon that the renowned Professor Bas Bloem calls ‘compensation strategy’ when a person can hardly walk and needs a cane but can then play sport or run fluently. It literally makes it so hard to believe it is real. It somehow adds to the strangeness. You can view this video which sadly shows this strange reality.
The speed – The transition between Off and On when I was on tablets, the rapidity of the change a tablet makes is for me mind-blowing (in a scary kind of way). When I came from off to when the Produadopa/Vyalev pump was fitted it took literally two minutes to start to kick in. I remember saying openly that I am surely imagining it…and I wasn’t. Sadly the inverse has also been true and my sudden exposure to falling and balance has been wicked. It is almost unreal and again is different in different patients. The medication can be an almost perfect mask at times and it can cause you to let your guard down.
So is it real? I will compliment myself when I say that I have pretty solid Parkinson’s credentials – I have been diagnosed by two hospitals, two different DATscans which said the same thing, had the disease progress so quickly that I had to be ruled out by MRI from having PSP (it is much worse than PD) and have been given the Produadopa/Vyalev pump. So I think it is a pretty sure bet that I have it – sadly. It is also clear with time that each of these symptoms is sadly very real.
As I have described above, there moments however when I am a little bit in disbelief with the situation. This together with the myths of the disease – the lack of knowing what truly causes it, the lack of a 100% full proof diagnostic tool are two elements which can fuel this sense of “am I imagining it?”
So what?
I am not for a second suggesting any kind of ‘love fest’ of symptoms. Comparing symptoms is really not my thing.
These examples have real world consequences however. It can lead you to a much longer diagnosis as it can take so long to diagnose either because you dismiss it or you or doctors assume it must be something else. It can lead you to delay seeking help when you need it especially as appointments with Neurologists are often months between them and this can lead to extended pain and much lost time in the journey. It can also lead you to develop self-doubt which is not helpful to the emotional condition we are in.
More broadly, it emphasises the point of the need for a holistic approach to the taking care of the body and soul – medicine is clearly one important aspect but it is a disease which ravages all parts of the body and emotional faculties so it needs self defence which is as broad and holistic as possible. Therefore the importance in my routine of yoga, walking, running, diet, limiting stress, keeping the brain exercised and yes medication.
So, Am I imagining it? Clearly there are times when it is not PD such as when I stupidly fell down the stairs whilst sending a whatsapp message. There are also times when it is other conditions, but over time I am learning that you start to develop a bit of an intuition which you will begin to trust.
Parkinson’s is hard enough (trust me) that it doesn’t help matters when it is dismissed or ignored. Time is against us as well and we need to recognize that it is a multi faceted disease which requires action on many fronts.
3 Responses