114. Diagnosis Day a repeat

Don’t worry I haven’t got Double Parkinson’s. It is currently May 2020 … and I have been in lockdown for 81 days.

In fact it is no exaggeration to say that the whole wide world is in some form of lockdown flux … fluctuating between being in and out in an awful Hokey Cokey scenario due to the awful global Corona Virus pandemic. So people have been staying safe and staying at home for weeks. By now I wager that people will have even tidied ‘that’ kitchen drawer and read the instructions to all their appliances, including the salad spinner at the back of the cupboard. After reading the instructions for the first time, thinking ‘ooh this is a welcome addition to my lunch making regime’ discovering it went to the Charity shop in the sky in 1972. I know that some people have got so bored that new people have been reading this blog. The first post describing my diagnosis is so far back that I thought it was worth reposting … and then any new people can go ‘oh that’s what she’s on about’.

Just to clarify I was diagnosed in November 2012 and started the blog in January 2017, so the first five years are told retrospectively. Today May 2020 I have been diagnosed nearly seven and a half years.

So here goes … in the same way that the tv has a summer schedule of repeats … here is a repeat of the first blog post. If you would like to carry on reading in chronological order please look at the front page. … under archives.

Repeat : 1. Diagnosis Day

Chinese Whispers : my body seemed to have started it’s own game without consulting me first.  Random, seemingly unconnected, things kept happening to my body, as if my body was whispering to me and I couldn’t quite work out what it was on about.

  • Early 2012: a few examples of the interestingly ignorable whispers …

I was lunching with a friend and noticed it was difficult to twiddle my fork.  Answer : just clumsy.

Then I noticed that my left hand shook.   I convinced myself  that it happened specifically when I was hungry.  Answer : I have always suffered from the (probably) non medical condition of ‘hollow legs’ (being constantly hungry).  So the shaking was affectionately referred to as being ‘borderline hyperglycaemic’ (as in needing to eat immediately), an excuse for a bar of chocolate?!

NB I must point out that I am not medically trained (you may be surprised by that fact).  I would like to apologise to any ‘hollow leg’ sufferers, or suffers of ‘hyperglycaemia’, borderline or otherwise.

Tap dancing (yes, really) became very difficult.  I would regularly say after a class that it was definitely more of a mind work out.  My left leg seemed to be ignoring instructions.

All of these things were ignorable.

  • April 2012.  A new symptom appeared, which was annoyingly UNignorable (more of a) prod and raised voice, than a whisper.

Whilst typing the final essays for my degree (yes, really), my left hand stopped typing.  This was now annoyingly UNignorable.

I just knew it wasn’t physical.  I had been able to touch type for about 25 years and I just knew something wasn’t right.  Trying to explain to people that my left hand wouldn’t listen to my brain seemed a ridiculous thing to say

I now got assertive.

I was lucky enough to have private healthcare, so this sped me through my appointments.  So I don’t bore you I will do the same with this part of the blog.

First suggested diagnosis was a trapped nerve in my neck.  I had Physiotherapy for 6 months.  My left arm would tremor and would move awkwardly.  The symptom was changeable and some weeks we appeared to be making progress as it seemed to have improved and then next week it seemed to be worse.  Shaking and movement would also change during the treatment.

As no improvement after 6 months I was referred to a Neurosurgeon.   After the consultation and MRI scan.  The Neurosurgeon said it definitely wasn’t a trapped nerve and thankfully the MRI scan was clear.

November 2012 : As no diagnosis and I was worried, the Neurosurgeon referred me to a Neurologist.

The Neurologist put me through some surprisingly unscientific tests.

  • Sitting on the edge of the couch, arms outstretched, he asked me to subtract 7 from 100, with my eyes shut.  I was briefly concerned.  Diagnosis based on primary school maths didn’t appear very scientific.  He reassured me he wasn’t testing my maths but whether my arm shook when concentrating – it did.
  • Walking across the hallway, he said was I aware I dragged my left foot – I wasn’t.
  • Then the final test, and this was the big one, the almost conclusive one.  You may think, blood tests, electrodes, swabs, special super duper computer analysis – no.  It was what I affectionately call the ‘tweety bird’ test.  Where I hold up my hands and move quickly my thumb and first finger to demonstrate a tweeting bird shadow puppet.    My right hand was fine.  However, my left hand had problems.

He said there was no need for any other tests (there is another scan but he was so sure of his diagnosis it was unnecessary).

My Neurologist leant forward in his chair, and said directly :

‘You have Parkinson’s Disease’.

He immediately followed this by reassuring me that I was not alone, he would be my Consultant and I would have a Parkinson’s Nurse.  He also said there are medications to allow me to live an active life.

My initial thoughts may surprise some people …. Relief.

  • Relief it wasn’t an inoperable brain tumour.
  • Relief that someone finally believed me.
  • Relief it had a name.
  • Relief that I could now, after months of faffing, finally do something about it.

The Neurologist offered me medication there and then.  However, as I have always avoided even Paracetamol I said no.  And actually the symptoms, although annoyingly unignorable, at that time, weren’t actually stopping me doing anything.

In that moment I can honestly say my life and outlook on everything changed, and actually it might surprise some people, that although in lots of ways for the worse, in some ways for the better.

End of Diagnosis day post. If you would like to carry on reading from the beginning then the next post 2. The Morning After can be found if you go to the front page of the website and click on archive blog posts.

Over and out.

Stay safe.

113. Do as you’re told (please) ode

Please follow the rules … many of us have been in isolation for over 70 days …

I’ve thought of a tiny positive,
Of having to socially distance,
Your friends won’t be able,
To pinch your pick n mix.

Wearing a mask means,
You’ll save money on lipsticks,
It’ll also hide your wrinkles,
No need to botox your lips.

The tubes will be a nightmare,
But there should be more space,
So you shouldn’t have to travel,
With an armpit in your face.

You might have to queue more,
Live life at a slower pace,
But it’s a small price to pay,
For keeping us safe.

The Parkinality Poet

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 :

Sleep

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