The loss of a special power – now that is something to be sad about.
The power that women are particularly good at – ‘multi tasking’.
Pre PD I used to swish about showing off with my thinking, doing, walking and talking.
I used to confidently stride purposely around the supermarket. Simultaneously putting groceries in the trolley for a midweek roast, skilfully avoiding other shoppers, whilst calculating pick up times for the children. At the same time eavesdropping on the conversation between the couple with just eleven apples and cotton buds in their basket.
Now I order online. I would rather use my ‘on’ times with my meds for things other than supermarket shopping – thank goodness for home delivery.
It is hardly surprising with all the disruption going on between brain and body. It can sometimes take all my concentration to walk through shops for example, with the confusing floor, bright lights, loud music and meandering people. So to try and hold a conversation about the latest velour jumpsuit (yes, really) at the same time would cause chaos.
My walking is the biggest problem at the moment, and so swishing is obviously out of the window. The stagger and shuffle is more p***y than swishy!
So when I say, ‘shhh, I can only do one thing at a time’, I really can only do one thing at a time.
Especially bad places are busy places such as tube stations, airports, shopping centres, etc.
So a non analogy:
Large shopping centre on a Saturday – it should have a health warning. Immediately we arrived I knew it was a mistake, walking was really rubbish. But head up, change of mindset, headphones on, and I can sometimes get going. Once I get going, I have to walk at speed and find it difficult to stop. However, anything that breaks my concentration stops me in my tracks and I have to start again.
(top tip : before you get into the ‘zone’ of walking at speed, make sure you check with the rest of the family where you are going, it can take time for them to catch up).
As a semi professional shopper pre PD, I would be first in the shop rummaging through the bargains. Now I will stand at the door of a shop and think I can’t contemplate going inside. A change in flooring, e.g. from carpet to tiles, doorways, someone crossing my path or someone talking to me, breaks my concentration and it all goes pear shaped. I have to regroup and start again.
You may think this saves money. The problem is I have discovered very nice strangers (well actually, they’ve become more of acquaintances) will randomly knock on my door and hand me parcels, as a result of a quick click on the computer. On-line shopping has a lot to answer for.
I went through a phase of being worried about going out. I try not to let this worry take over. I have a few things that I do to make me feel a bit more confident and organised.
Kindness of strangers :
I used to decline help, which in hindsight is silly. It takes courage for someone to go up to another person and offer help, so for me to turn them down is rude.
So thank you to :
- The man who helped me cross over the road, without being asked, when I got stuck on a traffic island in the road (my walking stopped and I couldn’t get momentum to move forward).
- The lady who took my arm and escorted me across the road and to my appointment.
- The train cleaner and physio who got me on a train at a mainline station.
- The inebriated office worker who made me laugh late at night, when I was staggering and shuffling (UNinebriated) through a city mainline station. He asked me why I was tap dancing and I said ‘I love to dance’ and did a little ‘step ball change’ (see I told you I did tap dancing pre PD).
And I’ll forget :
- The person in the car who swore and gesticulated at me when I faltered at a crossing and stepped back, delaying their journey by a nano second.
I am constantly clock watching at the moment. So working out when the best time is to go out when my meds are likely to be working at their optimum. This doesn’t always work out, sometimes they don’t kick in and sometimes it is unavoidable that I have to go out at a potentially bad time. I just never know, as sometimes I can be tip top and meds work continuously.
I try and limit stress when out and about by always carrying :
- Medic Alert bracelet
- Phone (with alarms set for meds)
- Meds (meds for the day and spares in case I fumble and drop a tablet)
I am boom or bust. When meds are working I tend to do loads, and then crash and burn. I know I should pace myself, but back to the water analogy. When water is reinstated I defy anyone not to drink as much as possible in case it switches off again.
All this randomness and unpredictableness (is that even a word), is obviously difficult for me. However, I know it is even more difficult for the people around me. One minute tip top and the next crashing and burning. I must be difficult to live with sometimes (no comment required).
PS Flanrinsto, aah Flanrinsto. I really wish I had thought of a more catchy name. I did say I couldn’t use a traditional name, as no one wants to be labelled with the same name as a degenerative neurological condition. So a catchier nickname … Flano, Rinsto, FR – answers on the back of a stuck down envelope (that’s alienated half my audience wsf).