THE BLOG

Shades of Parkinson's Continued

12/04/2013 20:23 BST | Updated 12/06/2013 10:12 BST

I am continuing last week's topic of how difficult it can be, socialising and going out when suffering Parkinson's or any chronic disease. Many people don't feel at ease around me, not knowing what to say, or expect. I may walk in a strange manner, shake, show no facial emotion on occasion (called 'masking'), yet despite all this, thankfully all my marbles are intact, I still have a sense of humour, and I'm certainly not contagious!

Knowing when to offer help, lending a hand, and realising when to step back and allow a disabled person the dignity of managing by themselves is a fine line and not easy to judge. It is also difficult for the sufferer, as I'm a classic case of someone who hates asking for help, but in my present condition, many times I cannot perform a task, which is frustrating beyond belief. 'Stubborn' being my middle name, I sometimes endeavour to take on something that I can't possibly do, but this is part of my nature, and without my fighting spirit, I may not have made it this far.

Something as simple as shopping for a present, can pose a problem. I wanted to buy a gift for a friend's birthday, and found a shop nearby with a large range of presents. The door of the shop had an enormous heavy metal frame with large thick glass panels, making it weigh a tonne. Shuffling in my ungainly Parkinson's 'walk' with a crutch to keep my balance; I was not going to be defeated by a door. I tapped on the glass pane and caught the attention of a saleslady inside, who quickly came to my assistance and opened the door for me. She smiled politely and I began to search for a suitable gift.

There were many cut glass vases and delicate breakable items on display. I picked up a small glass dish and as I placed it back down, I heard an audible sigh from the saleslady I had been unaware of, but was standing right behind me. She asked in a gentle tone if I was looking for something in particular and maybe she could be of assistance. I realised she had been watching my unsteady walking, shaking hands, and that I looked like an accident waiting to happen! Seeing her anxious expression and realising she indeed had a valid point, I told her what I was looking for and she led me over to the counter where there was a comfortable seat. Once I was seated and safely away from all the breakables, she brought over several items to show me, one of which was perfect, exactly what I was looking for. Pleased she had a satisfied customer, I paid for the item and she opened the door for me to leave. My mission accomplished, this perceptive sales lady had been helpful in a tactful and considerate way without offending my feelings.

Gone are the days that we would go to the cinema, and friends have stopped asking us, knowing we will decline. Most cinemas are not disabled friendly, having many steps leading to the seats, and trying to manoeuver with crutches or a wheelchair in a semi-darkened cinema is just too difficult. Of course one could sit right down at the front where there are no steps and plenty of room - but who wants to strain one's neck looking upward for an entire film, apart from being so close to the screen, one would feel practically part of the film itself.

Another difficulty poses a problem, for some Parkinson's patients; the sudden urgency to go to the toilet can occur at the most inopportune times. The last time we went to the cinema, I suddenly needed to go; knowing I couldn't wait for the interval, I had to start immediately making my way towards the toilets, which was easier said than done in a darkened cinema during a film, not to mention causing annoyance to the entire audience. The whole episode took half an hour, so by this time I'd missed a fair portion of the film, and disrupted everyone for a second time as I returned. I went to sit next to my husband, but before I could sit down, the puzzled face or a complete stranger stared up into mine. This wasn't my husband! Looking up at the audience, I could see someone a few rows back waving his arms madly at me. My husband had been watching me, and could see I had gone to sit in the wrong place. So now we watch movies at home; much more comfortable, and if anyone wants a drink, fancies a snack, or needs to go to the toilet, we simply press 'pause'!

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