The Indie’s Parkinality columnist Julie Walker, of Bishop’s Stortford, writes not about parking, but about living with Parkinson’s disease in her 50s…
Tin of soup, tin foil, tinnitus – rubbish gifts for a rubbish tin anniversary. Last Monday (April 11) was World Parkinson’s Day and this April is my 10th Parkinson’s Awareness Month. I’m not celebrating, and I’m definitely not thinking ‘oooh 15 more years and it’s silver’.
As Parkinson’s disease (PD) degenerates, life becomes more difficult to negotiate and the list of people I need to thank, and apologise to, gets longer.
Thank you to the many people who, when I am having mobility problems, have offered, amongst other things, their seat, their arm or a piggy back (really). Apologies for the times I have refused a seat because I might fall off of it when dyskinesia is kicking off, refused an arm because I need to use both walking sticks for balance and refused a piggy back for health and safety reasons.
However, please continue to offer as there will be times when I need help – but I will still decline the piggy back.
Thank you to anyone who has ever held the lift door open for me when my walking has been bad. Apologies for the times I have dragged myself past the lift announcing confidently ‘I can do stairs’. On reaching the stairs I then stride up them as if nothing is wrong. I’m not being rude. Often walking up stairs, walking on a striped carpet or stepping over the cracks in the pavement are all easier than walking on flat, plain ground. I think – and don’t quote me on this – it is something to do with the brain cueing the edge of the step or the line on the ground which initiates walking.
I try to avoid lifts if at all possible. Changing direction and narrow doorways can cause my walking to stutter and freeze, so negotiating a lift doorway can be problematic. For some reason, lift sensors are only set up to identify moving humans. Inevitably, when I freeze the doors shut on me and I am left unable to move, the doors repeatedly rebounding off me as they stubbornly try to close. I’m convinced that the lift and PD are laughing at me behind my back, but that might just be my paranoia kicking in (paranoia can be a side effect of the medication).
Thank you also to the shop assistants, taxi drivers, delivery drivers, receptionists and medical workers. In fact, anyone in customer service working with the public who has ever lent an arm, ear or a shoulder to someone who needs extra help.
But there’s always ‘one’. The ‘one’ this month is the driver who took obstructing the pavement to a new level. I was walking home when, suddenly, a van started to mount the kerb. I was slightly shocked and looked up at the driver who proceeded, with exasperation on his face, to gesticulate with irritation, waving me out of the way. Unless he was deep undercover he was neither about to give birth nor delivering a kidney.
Finally, here is, in my opinion, my most useful top tip for people living with PD. One of the many incredibly frustrating symptoms is the way it affects the actions which seem unimportant until you can’t do them. I’ve found that changing the style of the action can help. Confused? These examples should help explain.
Difficulty stirring your tea? Try changing the direction you move the spoon.
Difficulty waving? Try waving like royalty. If you do already, then try waving like a child.
Difficulty wiping up the crumbs from the table? Try… actually don’t try wiping the table. Walk backwards to the pub instead. When I can’t move forwards, often changing moving ‘style’ can initiate movement. For example, walking backwards or my own style of ‘dance walking’, incorporating the occasional jazz run, will often help initiate movement.
This year I have, again, produced a short awareness video in the hope that it will give people more understanding and will therefore become more tolerant of the confusing symptoms of PD. Also in the hope that occasionally a neurologist might view it and it will add to their understanding.
Please take a look at the video, but then watch some comedy for some light relief.
Thank you for your continued support.
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