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Sunflower lanyard, radar key, blue badge and door-to-door hospital transport can make getting out and about with Parkinson's disease a little easier





Parkinality columnist Julie Walker, of Bishop's Stortford, writes not about parking, but about living with Parkinson's disease in her 50s...

Do not attempt this if you are crossing the road, driving, operating heavy machinery or have Parkinson's disease (PD).

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 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 44 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.

Sunflower lanyard

Wearing a sunflower lanyard makes people aware of Julie's hidden disabilities when she's out
Wearing a sunflower lanyard makes people aware of Julie's hidden disabilities when she's out

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 is the symbol for hidden disabilities. https://hiddendisabilitiesstore.com.

Radar key

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. https://shop.parkinsons.org.uk/products/brass-radar-key.

Blue badge

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 as the badge belongs to the person, not the driver or the car.

Take a look at your council's website to see how to apply and whether you meet the criteria.

Hospital transport

I don't drive and public transport is difficult to negotiate. I have so many appointments with PD, Crohn's 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 into the waiting room and vice versa – 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 doctor's surgery.

Support group

The support group is somewhere I always try to 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, from 12.30pm to 2.30pm, at Wiggly Willow in Hockerill Street, Bishop's Stortford CM23 2DW. Email Claire.uwins@mac.com for more information or to 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.



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