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.