Hello, cooeeee, sorry to interrupt, but another couple of newspaper columns for your perusal. I am many many things, from Effervescent to energetic to daft to doollally, but I am not lazy … I am merely being down with them there kids and rather than wasting world resources and writing a new blog I am recycling and reusing my newspaper column, thus saving the snails the squirrels and the whales.
Going out with Parkinson’s
Do not attempt if you are crossing the road, driving, operating heavy machinery or have Parkinson’s. First wearing a pair of socks on each hand, put on and tie a pair of lace up shoes. Now stand up, ensuring you are near a chair to steady yourself. Next, point your toe and (attempt to) walk; alternating, toe first, heel second, chanting ‘toe, heel’ keeping your legs straight. Welcome to Walking with Parkinson’s.
Every time I think I have outsmarted Parkinson’s Disease (PD) it throws another spanner in the works. The current spanner is a new problem with my mobility. My knees will lock causing me to tilt forwards onto my tip toes. My toes ‘glued’ to the floor, I find it impossible to move forwards.
However, I have had a breakthrough. I suddenly realised I was using my feet incorrectly. Leading with my toe rather than my heel. Once I started leading with my heel and consciously thinking ‘heel toe’, raising my knees, I can occasionally restart my walking.
In my mind my new way of walking feels exaggerated and awkward. I half expect to see oversized long red shoes on my feet whenever I catch sight of my reflection walking past a shop window, just needing a red nose and squirty flower to complete the look. However in reality I am walking normally. Walking, which had been automatic for over forty four years, now requires huge concentration.
You know when you need to pop out for a loaf of bread but you’ve used up your dopamine hoovering the stairs? Nor me, I am more likely to use up my dopamine dancing to The Time Warp. Undoing the toothpaste, finding keys, scratching my nose, so many tasks and so many movements within each task. Dopamine is required to get those messages from my brain to my muscles. As dopamine depletes, my symptoms become even more unpredictable and I become increasingly unreliable. When trying to attend activities I often give up and stay at home. I apologise to all those people I have let down.
Determined to remain active and mobile as much as possible, there are a few things which help me when out and about.
It is unnecessary to shout ‘wheelchair’ when entering a disabled toilet because people can see the person has a disability. As I’d rather not announce ‘continence problems’ when going into a disabled toilet I wear a sunflower lanyard. The sunflower being the symbol for hidden disabilities.
I have discovered that mere mortals can access those huge toilets behind the secret locked doors. If you do need an accessible loo, a radar key, available from many charities, will unlock these toilets.
Watch as friends fall over themselves to be your designated driver. Disabled spaces are often larger and near the venue. You don’t have to drive to have a blue badge. The badge belongs to the person not the driver or the car. Take a look at your council website to see how to apply and whether you meet the criteria
Travelling safely to Hospital appointments
I don’t drive and public transport is difficult to negotiate. I have so many appointments with PD, Crohns and a new eye problem (don’t ask), that friends can’t always help out. I have discovered door to door hospital transport. The service will get me safely from my sofa actually into the waiting room and vice versa. An essential when symptoms are kicking off and I can’t concentrate, walk or interact clearly. Services might differ from area to area, so speak to your doctors surgery.
The support group
The support group is somewhere I always try and go even when PD symptoms are kicking off. No week is the same and there is no obligation to take part in the activities. We meet on the last Thursday each month (12.30-2.30pm) at Wiggly Willow Club House, Hockerill St, Bishop’s Stortford CM232DW. Contact Claire.firstname.lastname@example.org for more information or get involved in any way. Come along for cake and a cuppa.
It is now the end of Parkinson’s Awareness Month, Thank you to all those who read my column and contributed towards awareness in some small way. From offering an arm to someone unsteady on their feet to donating to one of the charities.
Another Column … read one get one free
Parkinson’s Awareness Month April 2022
Tin of soup, tin foil, tinnitus … rubbish gifts for a rubbish Tin Anniversary. Monday 11 April is World Parkinson’s Day and April 2022 is my tenth Parkinson’s awareness month. I’m not celebrating, and I am definitely not thinking; oooh fifteen 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 to 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, 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, 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 of PD 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, unless 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. There should be a link on the Indie website and facebook page. Take a look at the video, but then watch some comedy for some light relief.