Parkinality columnist Julie Walker on being 'switched on' following deep brain stimulation operation for Parkinson's disease
Parkinality columnist Julie Walker, of Bishop's Stortford, writes not about parking, but about living with Parkinson's disease in her 50s...
Lavinia was in a state of flux. She had been doing her best for 10 years, attempting to manage deteriorating Parkinson's disease (PD) by organising, sorting and dispensing medication as it arrived in the brain.
After years of the same old routine – as PD deteriorated, medication was increased – June 27, 2022 was a date etched on her mind.
This was the day of the brain surgery, when Lavinia's 'brain office' was invaded and her faux cheese plants replaced with electrodes.
Six weeks after brain surgery, the rods were switched on. As they glowed, a delivery of reduced medication dropped into Lavinia's brain office. Lavinia was now flummoxed – she was working with less medication in conjunction with rods controlled by an outside force. This was going to take some getting used to.
Confused? Anyone else imagine there are tiny people in their body working hard to keep you burping and breathing? Just me then. Allow me to introduce Lavinia, my brain operative, who helps me make sense of the copious amounts of medication I take.
Ten years ago I had gone from not even thinking a paracetamol would work to having to trust and rely on medication to help me brush my teeth and put on my coat.
With long-term medication use, the associated side effects and the medication's unreliability with food absorption, PD was becoming increasingly difficult to manage with medication alone. Hence the introduction of deep brain stimulation (DBS), implanting rods deep into my brain, creating an alternative method of managing PD.
If Lavinia is confusing you, and you prefer your information unencumbered by analogies, then here is my attempt at bullet points to describe what happened when I was switched on. I have been waiting for this moment for so long, I am (almost) lost for words.
Firstly, allow me to clarify for everyone who has asked; it wasn't a Z-list soap star, it was an A-grade neurologist who switched me on.
• I arrived at the appointment, virtually unmedicated, in a wheelchair.
• My consultant logged on to the device in my brain on his laptop.
• He waggled my left hand and asked me to wave with my right hand.
• He altered the settings of the electrodes on his laptop until my left hand waggled satisfactorily – not too floppy, not too firm.
• He then swapped to my right side, connecting his laptop to the rods in my brain.
• He adjusted the rods as he waggled my right hand and asked me to wave with my left hand.
• As he altered the machine my vision 'went weird' (not a medical term) and I felt nauseous.
• He changed the electrode settings until the hand waggling and hand waving was satisfactory (and I stopped feeling sick).
• I was able to walk on limited meds and the machine set to low levels of stimulation.
I was told to take one tablet and return after an hour to see how I was coping. On the advice of my neurologist, my medication has now been reduced and the settings on my DBS machine set. I will return in a month to see how I am getting on.
It is not an exact science and is through trial and error, my neurologist getting to know my brain and me articulating how I am feeling between appointments. After all, over a month I spend about half an hour with my neurologist, the other 743½ hours I manage PD alone.
So what has happened? I do not have a big switch on my head nor flashing lights announcing I am switched on or off, so the unaware might not realise anything has changed. In the past, if you have bumped into me by the bin store looking tip top-ish, it is likely I have chosen to use my brief 'on' time to put the rubbish out.
I hope the introduction of DBS and the reduction of medication will not only mean I can put the rubbish out whenever I wish, but that I can then choose to skip into town to buy more bin liners.
