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…
I have intentionally avoided the stereotypical trench coat and cartoon-style magnifying glass as I feel they would give the game away faster than a foot shuffle.
Allow me to explain. I often say that living with Parkinson’s disease (PD) is a bit like being a rubbish undercover agent. People with PD spend their time trying to integrate into society, taking medication to attempt to carry on their ‘normal’ lives. As time marches on and PD deteriorates, visible symptoms break through and it becomes more difficult to remain undercover.
Despite trying to be so for as long as possible, no (wo)man is an island. The Wise-ish Man and I have finally had to admit that our cover might have been blown and we need outside assistance.
I have recruited what I affectionately call an invisible friend. My invisible friend is not literally invisible as that would cause more problems then it would solve.
Let me explain. I became aware of extra assistance at a PD dance class. There was a woman sitting at the side with headphones on, reading a book. PD classes are often observed so, despite the fact she was more interested in her book than our grapevines, I thought nothing of it. At break time she came over to the lady exercising next to me and gave her a drink. I then realised she was there to facilitate the lady, whose PD was quite advanced, getting out and doing something ‘normal’.
I imagine pre PD the lady would have gone to a dance class alone, driving to the class and preparing her snack, finding the toilets etc. but now she needed someone to assist her.
So my invisible friend is in the background to subtly give me the confidence, emotional support and ability to do things which, pre PD, I would have done on my own.
The Wise-ish Man and my first few days away in the UK, post Covid, were a success. We decided not to take the new mobility scooter as it would be too cumbersome for us to manoeuvre on the journey. A quick phone call to the hotel and they gave me the number of the local mobility shop. I organised for a motorised scooter to be delivered to our hotel and collected at the end of our stay.
The scooter was invaluable when out and about, despite briefly breaking down in a man crèche, AKA the bookies, whilst I was scouring the local charity shops for a bargain. A quick Google for the instruction manual and we were on our way again.
It was also compact enough to use within the hotel, which meant our arrival at breakfast and dinner was announced by the reverse beeping sound of the scooter as the Wise-ish Man manoeuvred the scooter to the table.
We had a lovely break, but all too soon it was time to return home. Weighed down with all the essentials for a few days away – two sets of sticks, a large(ish) suitcase, a handbag, a mobility walker and a bag of miscellaneous bits and bobs – we set off on our way home
We pre-booked seats on the train with our disability rail cards. At the same time we pre-arranged assistance direct with the train operator, ticking the boxes saying that we needed a wheelchair, help with luggage and assistance from train seat to taxi.
Getting a taxi from the hotel to the station, the driver kindly alerted the train staff to our arrival. I held my breath, fingers crossed that my planning had worked. As the taxi driver emerged from the station followed by a member of staff, a sigh of relief when I realised we were on The List.
We were escorted to the waiting room where two passengers were asked to move from assistance seats so that we could sit down. She then returned to escort us to the platform and our seats on the train. After an uneventful journey, we were met off the train by another member of staff, who was waiting at the doors by our seat, with a wheelchair. We were escorted to our pre-booked taxi which was waiting at the station for us.
We returned home happy, but, as is traditional when having been on holiday, needing a holiday.
Smashing.
Credit: Source link
