112. Isolation and Oscillation

I must write a billion times ‘I must blog more and, when I do, I must remember to post said blog post’

Below is a blog post I wrote near the beginning of the lockdown … I put it to one side so that I could ‘sleep on it’ and re read the next day to ensure I hadn’t said anything silly (as if?). But then forgot (unusual) … just logged on thinking I must do a post, found this draft so posting this one …. will leave it a bit and then post again … thank you for your patience ,,,, les

Probably written around beginning April 2020

Day oscillation in the PD House … and I have been in isolation since 29 February 2020 … This is the first day I desperately want to put on some lippie and go out on the razzle … so full of energy … almost pre PD energy ….I just need to darnse.

So silent disco going on … currently one direction teenage kicks …. I know I’ll over do it but atm I don’t care. Energy like this strikes so rarely. A bit (but not a lot) like being desperate for the loo …. when you gotta go you gotta go, when I gotta darnse I gotta darnse … sorry this oscillating isolation is sending me a bit batty.

I wonder if really serious people ever have a mad five minutes …. you know those important, grown up, people you see out and about …. do they ever let their hair down … sorry for the digression … question is rhetorical and does not count towards your final mark so no need to answer.

Okay (crickey I hate it when I start sentences, particularly paragraphs, with that word). Isolating because of the coronavirus pandemic. No end in sight …. lots of theories, but no definite date.

I am not sure what I’ve written before, and apologies for repeating myself if I am.

Okay (?????). Went into isolation two weeks before official date. Really don’t want to get this bug. My huge fear is going into hospital and PD not being taken into account. In ‘normal’ times there is often a friend or relative who accompanies or takes you into hospital who can reiterate about the importance of meds and PD. However, at time of writing, people are going into hospital alone, so who could tell the nurses. I have my stuff in a Parkinson’s charity rucksack and my meds/prescription/dosage list in my bags.

Parkinson’s is so confusing and often i am seen as drunk or boring or both …. and that is just the physical symptoms. Dyskinesia (continual moving) affects me in so many ways and i look like i’ve lost the plot to those who don’t understand PD (and tbh who does), freezing looks like I am being stubborn and fed up and unhelpful (when I’m not). And they are just the physical symptoms … the invisible symptoms, such as constipation, apathy, depression aaaah … its carp carp carp.

So trying to keep myself occupied in isolation … difficult … ‘People’ say get into a routine …. which would be simple if I knew PD’s agenda. However getting up each morning to do Tai Chi when dyskinesia is kicking off or freezing is stopping me is impossible and when I can move ‘normally’ then domestic chores need doing (boring but true, no homehelp and the house needs to be a non-health hazard).

So i have in my mind stuff … which the idea is that i remember this list and then according to all the variables, PD, me, the weather, energy levels I pick what to do when.

My list (other lists are available)

Moving activities :

Dancing, exercise, cleaning, washing, brushing teeth

Sleeping activities :


Sitting activities :

Making cards, painting, reading (yeah right), writing poems

Over and in (obviously we can’t go out)

Ps launch of my second book delayed until end June