What it feels like for someone with Parkinson’s disease to switch on after freezing
Parkinality columnist Julie Walker, of Bishop’s Stortford, writes not about parking, but about living with Parkinson’s disease in her 50s
Apologies for the radio silence. I was hoping to wow you with a film of my sassy walking. Instead, I have been seeing my neurologist regularly and he has been trying different ways of programming my brain to improve my dexterity and walking.
Despite the brain operation, my walking is still not great and I am still taking medication. Food is currently interfering so much with the absorption of my Parkinson’s disease (PD) medication that eating is becoming less and less appealing.
However, if I don’t eat then I have a tendency to become hangry - a cross between hungry and angry - which is not my most endearing character trait. So, for my health and household harmony, it is better that I continue with my meat and two veg.
The morning, when I take my tablets on an empty stomach, is the best time for getting things done. As the day progresses, the more I eat the less medication is absorbed. I imagine the medication and food have a tussle for absorption in my stomach. Invariably the steak and chips overpower the tiny tablets.
The problem is, the less medication absorbed the less I can move and I ‘switch off’ (the PD term used to refer to not being able to move). When I switch off, my legs become frozen.
This has nothing to do with Elsa’s pins in the classic Disney film. It is actually a PD term meaning my legs stop moving. They feel a bit like they are frozen in a lump of ice, but not in a cold way.
If you'd ‘like’ to experience some of my frustration, then please attempt to move the legs of the person in front of you in the queue at the post office (other queues are available). You must only use the power of your mind, no hands or shouting “Oi, move your legs love”. When I switch off, my mood usually crashes as well. This means I am not only ranting about not being able to move, but I also become irritable and, more recently, paranoid. Lovely.
Whilst waiting to switch on (the PD term meaning I can move again), I will become like a caged critter, unable to move around the room, instead my eyes flitting, making mental lists of what I will do when I am released from this torture and I can move again.
Switching on is an amazing feeling. In the words of Mr Pellow, I can feel it in my fingers and I can feel it in my toes. I get a few seconds’ notice and suddenly it is like an instant heater switching on and defrosting me.
I don't actually get hot, nor do I defrost, but that is the only way I can think to give non-PD sufferers some idea of what it feels like to switch on. I then become like a tornado rushing round trying to sweep, bake, type, paint and talk simultaneously. This sudden activity will use up the dopamine in my brain more quickly, resulting in me freezing and the cycle beginning again.
When my legs are frozen and I am struggling to move forward on the flat ground, for some reason I can do steps. I don’t mean I can perform 5, 6, 7, 8, the popular tune by the musical group of the same name (although I could give it a go). I mean I can walk up and down steps. I don’t know why either.
Up until this year there has been no alternative but to send medication via the stomach, which brings with it the problem of eating. This year, NICE (the clever people who authorise new medications for use by the general public) has confirmed as safe a new way of getting the medication into the brain, bypassing the stomach. This method goes into the body via the arm.
Rather than misinforming and confusing readers, you can find out more at www.england.nhs.uk/2024/02/nhs-rolls-out-wearable-24-hour-infusion-for-advanced-parkinsons.
But - and this is a big one - I am unlikely to be able to have this new treatment any time soon. There is already a waiting list, it is expensive and I have already had an advanced treatment.
Ho hum, onwards and upwards.
