THE BLOG

It's a No Win Situation

02/01/2015 16:17 | Updated 04 March 2015

Staying cheerful, no matter what, is in my nature; I've always been this way, and would find it difficult to change what is an inherent part of my character. Without doubt, maintaining positive and active is by far the best attitude to adopt, not only for the patient but for family and friends, who lovingly stand by. However, this coping mechanism, a necessary façade of sorts, also has a down side. Making light of what is a highly debilitating disease, tends to give a false impression to everyone, which can end up being detrimental, resulting in lack of empathy and understanding of what it's really like to live with Parkinson's disease.

If you were to see me upon waking first thing in the morning; in pain, stiff and rigid like a board, toes curled under - painfully clenched, making it virtually impossible to walk, shuffling like an old lady, barely able to make it to the bathroom, you would get the message loud and clear. Were you to see me an hour later, once my Parkinson's medication has kicked in, the picture you'd see is very different. This was demonstrated quite clearly upon a recent stay in hospital making me realise how very much the visual picture (especially first impressions) can in fact give a completely false impression of the situation.

I take my first pill of the day at 06:00, and after breakfast at 07:00 I take the next dose of medication. Hence by the time the doctors were making their rounds at 10:30, I was "on" (meaning the Parkinson's medications were doing their job). The doctors gathered around my bed, and the head doctor, who had a lovely bedside manner along with smiling gentle eyes (I may be chronically ill, but I still recognise a handsome man when I see one!) were intrigued how someone suffering Gaucher disease and Parkinson's, admitted to hospital the previous night, could look as well as I did that morning. I thought, "If only you'd been here at 06:00, you would have seen with your own eyes, requiring little explanation on my part."

Parkinson's is a devilish disease, where the patient is subjected to a gamut of bizarre symptoms, ups and downs, good days and bad. Never knowing in advance what's the forecast, one thing I've learnt is "always expect the unexpected". No one but a fellow sufferer, truly understands what it's like to live with Parkinson's. We are expected to put on a brave face, and echo various mantras such as "use it or lose it", "We only can't if we don't" or my all-time favourite: "Parkinson's has made me a better person". Can someone really brainwash themselves into believing that suffering a degenerative disease actually makes them a better person?

So let's push aside for one moment all the quotes to boost morale, media hype, the growing list of famous people who share our misfortune in being diagnosed with Parkinson's (as if making it a popular disease); it really is a no win situation. If appearing too optimistic, pro-active and cheerful, one is met with a pat on the back for good effort, but the general public are kept in the dark as to the real nature of the disease. Say what's really on your mind, portraying a darker but honest perspective and no one wants to listen. Depression, a common symptom of Parkinson's, many a doctor may assume all too quickly that a patient expressing their concerns and speaking candidly is cause for concern, and sent to a psychiatrist. Just because one isn't in denial, understanding the ramifications of living with Parkinson's, and has a bad day now and then, does not automatically qualify one for anti-depressants.

It's like riding some frenzied merry-go-round, but there's nothing remotely "merry" about living with Parkinson's. Most of the time I'm bursting with fighting spirt and determination not to let Parkinson's get the upper hand. This would be termed as a good day! On a bad day, when I'm weak, in pain and unable to function; I am almost ready to throw in the towel, but the support from my devoted husband, keeps me from going down this road. So whether I appear with a smile on my face, allowing people to think I'm more or less OK and that Parkinson's isn't so bad, or tell it how it is, which nobody in their right mind wants to hear, it's a difficult call. Either you keep everyone happy and ill informed, or spill the beans despite the unpleasant truth. I find myself walking a fine line, but I will continue to keep positive whilst campaigning for greater awareness.

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