132: My Greatest Fear

‘My Greatest Fear?’ interesting question Mr Obelisk. ‘Is becoming invisible’

When I say ‘My Greatest Fear’. I am talking with regards to Parkinson’s. It is a ‘given’ (not sure what that even means), that ‘the usual’ ‘fear’ things are already on my ‘Fear list’, ie anything involving wild animals, arachnids, frogs, ufos etc etc ‘

My greatest fear is becoming invisible and being ignored. I don’t mean invisible in a ‘superhero way – as ‘Invisibility Girl’ and I don’t mean ignored as in ‘not being chosen for the netball team’.

‘Please don’t judge a book by it’s cover’

This is becoming more and more important as Parkinson’s progresses.

I wager that most people want to be involved in society, acknowledged as a human.

When I am over moving I get quite a lot of attention, (just to clarify; I am not attention seeking, I just want to be a member of society, and if given a choice I’d rather have attention for something other than having PD). Many people are lovely and will offer help, some people will cross the street, some people will get accidently hit with my walking stick. Many friends ignore the Parkinson’s symptoms and just treat me as a normal person. But generally people notice `I am present, I am a member of society’

However if I am frozen, in many situations I am ignored, whether intentionally or unintentionally. And very quickly could become invisible and feel like I am not a member of society. Although many good friends who understand PD ignore my still exterior and treat me as a normal person.

I was sitting in the garden in the summer, quite happy, thinking about lots of things, brain super busy and animated; a proper interesting human being on the inside. I suddenly became aware of my physical self and realised that I had been sitting there unmoving for about 20 minutes.

I then started to think about how I must look like from the outside, still and unmoving in both body’s and face. Many peoples initial reaction could be that ;

I am as blank on the inside as the outside.

I am a boring human being.

I am not noticed at all and have become invisible.

People don’t bother interacting with me as I appear disinterested.

In the garden, even though I was on my own, I imagined I was frozen in the pub and tried desperately to force my mouth to form a smile, or a wink, or raise an arm, anything to let the outside world know I was still present and a participant in society. Even trying to speak in a frozen situation is a challenge. My mouth becoming smaller and volume quieter.

So, please please don’t judge people with Parkinson’s by their outward appearance.

So for that reason when ‘they’ finally release me back into society, I imagine emerging blinking, shuffling and rattling* wearing a neon tabard.  The tabard will be fitted with a scrolling LED display which will alert people to my mood).  *(one thousand and five tablets in lockdown and counting).   So Grumpy, Happy, Dopey, Bashful, Smellie   Obviously I am not medically trained so Doc will become ‘Excited’ and, for obvious reasons, Sneezy replaced with ‘Irritated’

During lockdown the rest of life might be buffering but Parkinson’s continues to impact on every aspect of everyday life.  Declining dopamine production continues to disrupt messages from the brain to the muscles to move.  Body movements such as striding, sewing, waving and walking, and facial expression, such as speech, smiling, winking and whistling are all increasingly affected

‘First Impressions Count’

The other day I did have to go to a hospital appointment unmedicated as part of the assessments for an advance treatment.   Yes, unmedicated, over seven years of unbroken medication, I had no idea what would happen and I was scared.

Diagnosed over eight years; Changing PD symptoms, increasing medication and it’s side effects, mean I am now being assessed for DBS (deep brain stimulation).

DBS involves seven hours of brain surgery to implant electrodes deep into my brain to stimulate dopamine production.    The result, a shaved head (which I intend to cover with drawings of rabbits)* and the ability to significantly reduce my medication, and associated side effects.   The device is powered by a battery implanted under the skin, controlled by a blue tooth hand held device.  This is not a cure and Parkinson’s will continue to degenerate.  However it  should give me a better quality of life for a few years.   

The first assessment involved me being tested at my worst and my best.   This involved arriving at my appointment unmedicated.  The gradual, careful reduction of my meds over several days, supervised by my nurse, was vital.  It is dangerous to stop medication abruptly and without specialist advice.

We were an hour early.   I was in a wheelchair, rigid and upright, but with dystonia (involuntary muscle spasms)  contorting and twisting my neck and back.  Desperate not to be judged by the others in the waiting room i tried to explain what was happening to me. When I write ‘explain’, I mean shout, mumble and sing, whilst writhing about.  Years ago I would have avoided myself.

My consultant put me though a series of physical tests which were incredibly difficult or in some cases impossible.  I was allowed to take my medication and I gradually switched back on.  After lunch I was medicated and I walked into the appointment pushing the wheelchair, retook the physical tests and was able to complete them all.

I have other assessments to go through.  I await the results and then hopefully a break in lockdown to enable the operations to restart.

Although first I have to get the Crohns under control … as always I am on the case and new medications starting next week for Crohns.

This lack of facial expression which with PD is often ‘affectionately’ known as the ‘mask’ is very distressing.  Mask wearing. has meant that the whole world are experiencing a tiny bit of what people with PD have to go through.  Although I don’t put my mask in the bin at the end of the day.

I have now had the first Covid vaccination and hopefully there is light at the end of the Covid tunnel.  Although I didn’t have it early because of the PD. It was because of the new kid on the block – Crohns. I am now clinically vulnerable as I need to go onto an injectable immunosuppressant, so I will be vulnerable for the first few weeks on that medication.

I had a few random symptoms after the Covid jab which worried me, so I was advised to have a Covid test.  I was sent a home swab test. I first had to do a swab test from my throat and nostril.  A challenging procedure requiring dexterity. However the swab was not a problem in the end. The big challenge frustrating with fiddly fingers was building the actual packaging of the swab, in two bags and then have to build a flat packed box.  The results negative … phew.

  • why would I draw pictures of bunny rabbits on my head?  Because from a distance they will look like hares.
  • Stay safe and sassy.
  • In the words of Gabriella and Troy ‘We’re all in this together’.  

This is me

I have Parkinson's
Three small words
Changed my life

This outer shell
Is not me
Do not stare
Do not judge
Do not pity

This outer shell
Is not me
Ignore the mumble
Ignore the stoop
Ignore the shuffle

Parkinson's bullies me
Tries to control
I stand up
Take it on
I will overcome

On the outside 
I am Parkinson's
On the inside
I am me

By The Parkinality Poet