THE BLOG

Fifty Shades of Parkinson's

04/04/2013 11:43 BST | Updated 03/06/2013 10:12 BST

If I could possibly colour code all the symptoms and side effects of Parkinson's, I think there would be far more than fifty shades! The symptoms are many; vary to such a degree, each patient is unique. Most diseases have a set of common indicators that a patient would normally experience, but not in the case of Parkinson's. Having met and spoken with fellow sufferers, each one has a different story to tell, no two are alike, and this is probably what makes diagnosis and getting the right balance of medications so difficult. What works for one person, doesn't necessarily work for another.

As there are so many shades to Parkinson's, unless you are familiar with this particular disease, you may be wary, not knowing what to expect when hosting; feeling at a loss as to the needs or abilities of someone suffering from Pakinson's. If you are a fellow sufferer, then you will understand and relate to what I am saying. If you are not, I hope to convey what is often misunderstood, yet plays a huge part in the life of a Parkinson's sufferer, and that you'll realise what goes through our minds when invited out.

Maintaining one's social life is very important - both for sufferer and caregiver. However going out, whether to a restaurant or someone's house can put considerable stress on a person with Parkinson's. Just getting dressed and ready to go, is a major operation requiring help and extra time. Even though it may be a party to celebrate a happy occasion, the thought of meeting someone I don't know, explaining for the 100th time I have Parkinson's, or someone who I've not seen for some time, realising they may be shocked at a decline in my condition, causes a certain amount of stress. Parkinson's feeds upon anxiety and stress like a hungry scavenger, so whenever possible being in calm circumstances, is preferable. Obviously I can't wrap myself up in a cotton wool cocoon and retire from the world, but where viable I avoid uneasy situations.

At a social event where there are multiple conversations going on, I find it very difficult to follow, and can only focus on one person at a time. Noisy environments are highly disturbing, and often at a dinner party I am the last one to finish eating. Trying to make conversation and eat at the same time, simple as this may sound, is quite difficult for a Parkinson's patient. Loud music or even background music can also cause interference in a social setting, making it hard to talk, listen or focus. People feel confused by my lack of facial expression and may think I am disinterested in what they have to say. 'Masking' is one of the most unsociable symptoms, as the gormless expression concealing all emotions makes those who don't understand, wary of talking to me. An additional factor is most sufferers are at their best first thing in the morning, but as the day progresses, a slow decline sets in and by the evening, intense fatigue is a big problem. Even an afternoon rest is not a remedy, and late nights I was once able to keep, are no longer possible.

Eating and drinking in a social setting can be enough to deter me from participating, and I am likely to refuse a drink or food if offered. At a cocktail party for instance, standing holding a glass in one hand whilst eating delicate canapés is simply out of the question. Even if seated at a table, dropping food, especially on my clothes is a major worry. Any food that requires dexterity such as dissecting meat from a bone, or peas that have a way of falling off your fork and conspicuously rolling onto the floor, I avoid at all costs. Spilling a drink or knocking over a glass at the table is yet another scenario that goes through my mind.

All these seemingly small things may sound insignificant to you, but trust me, they are HUGE to a Parkinson's patient, and can often prevent one from going places. Many patients are reticent about venturing out socially, yet however difficult socializing becomes, it's important to maintain a social life, and essential to one's emotional welfare and that of the family.

If you know someone with Parkinson's, I hope you'll now understand a little better and as a host be able to make your guests feel comfortable, and please remember to never serve peas! Next week I will continue with this topic and cover some other issues related to going out, which I'm sure affect not just Parkinson's sufferers but anyone living with a debilitating chronic disease.

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