135. What has Janet been up to?

I have been away … not literally obvs …pandemic paranoia and all that. But I have been neglecting the ole blogerooni.

I have been busy thinking … lots on my mind.

Parkinson’s has been continuing ‘yawn’ … continuing to table* up my life and to be honest it is dull. Deterioration, dyskinesia, dystonia, Doris the duck … dull dull dull. Sorry sorry sorry. There is only a certain amount of deterioration one can write about and you read. So, in case you were concerned, I am still deteriorating. No new news, no nothing.

Until now …. trumperty trumperty trump – thank you Nellie

*to maintain this blogs PG rating I will continue forthwith using the world ‘table’ instead of a more expressively intense expletive.

So, I have had confirmation that I am on The list for DBS (deep brain stimulation) … if you want more information please look at the Parkinson’s UK website. I am gathering information on a need to know basis, ie I need to know what hat I will be wearing after the operation to cover my bald head, but I don’t need to know how they put electrodes into my brain. In the meantime I will be having my hair cut in a pixie/elf/old lady hair cut to preempt the shock of a shaved head after surgery.

Over the past few months, as well as thinking, I have also been going through a series of assessments to see if I am a suitable candidate for the operation. To save time, brain power and typing ability I will cut and paste the newspaper column I wrote about the assessments …. here

Parkinality Column May 2021, Advanced treatments

Don’t be alarmed if one day you see me skipping down the street with drawings of rabbits on my shaved bald head **.  I hope it will be because I have successfully had brain surgery, an advanced treatment for Parkinson’s Disease (PD).  I’m sure even the most patient, empathetic reader of Parkinality will have started to wane.  Over eight years of dyskinesia, dystonia and degeneration and PD still has no cure.  I’m currently being assessed for my suitability to have Deep Brain Stimulation (DBS), 

First used to help PD in the 1980s, this is a definition from the European Parkinson’s Disease Association (EPDA) website… 

‘DBS therapy uses a small, pacemaker-like device to send electronic signals to a precise area in the brain that controls movement … via very thin wires. Stimulation of these areas appears to block the brain messages that cause disabling motor symptoms and so can provide greater symptom control’ 

The aim is to allow me to ‘shop without dropping’ and to ‘write without wobbling’.  It should enable me to reduce the amount of medication I take, lessening the side effects.  It is not a cure and in time my medication will need to be increased again.  However in the short term it could give me a few years of improved ‘dancing and dusting’.  The decision to have brain surgery is not made lightly. I’m currently being assessed to see whether I am a candidate for surgery. 

Motor skills assessment.  This is to assess my movement when I’m switched Off (unmedicated) and On (medicated).   I’ve taken PD medication, 24/7, for over seven years and being unmedicated was a real concern, I didn’t know what would happen.  It is vital that the reduction of medication is gradual and carefully supervised by my PD nurse.  It would be extremely dangerous to stop medication abruptly, without specialist guidance.  I took my last tablet at 5am on the day of the assessment, by 8am I was depleted of drugs, switched Off.  Thankfully the car journey to hospital, although difficult, was relatively uneventful.

In the waiting room, unrestrained by medication, it was party time for PD symptoms.  This was definitely an example of; ‘don’t judge a book by the cover’, on the outside I was a ‘disaster novel’, on the inside, I was still ‘me’.  Desperate not to be judged by the other patients, I tried to explain that I wasn’t always like this. When I write ‘explain’, I mean shouting and slurring, whilst simultaneously rigid and writhing, muscles contorting and my face gurning with Dystonia.  

Finally, my Neurologist wheeled me into the consulting room.  I was put through a series of physical tests, including walking and standing. Unmedicated they were incredibly difficult or, in some cases, impossible.  I was videoed for the assessment, apologies to the ‘bleep’ operator.  I was allowed to take my medication over lunch and I gradually switched back On.  Now fully medicated, I was reassessed and I found the same simple tests, simple.

Brain inspection.  I was apprehensive about an MRI scan during the pandemic, however the waiting room was empty and Covid rules adhered to.  The scan was noisy, a bit like being in a rubbish space invaders game.   Forty minutes of scanning where, for some unknown reason, I sang ‘Knees up Mother Brown’, whilst imagining I was shooting aliens.  This distracted me and probably amused/concerned the nurse who was operating the MRI scanner.

Other assessments included wearing a ‘special watch’ (probably not the technical name) which monitored my On/Off times and sleep patterns.  I also had mental arithmetic, written tests and completed forms about my non motor symptoms.

I will find out soon whether I am suitable for DBS surgery.  However, the pandemic will inevitably delay any surgery.

Fingers crossed.

Stay safe

** Why would I draw pictures of rabbits on my shaved head?  Because from a distance they will look like hares.   

So I have failed/passed the assessments and am now ‘waiting’

Over and out for now