SKIING FOR PARKINSON’S

My wife has been skiing and broke her shoulder and dislocated it too, thus removing her from the slopes on her first day. As a qualified pessimist I told her that ‘I told you so’. She regarded this as unhelpful.

The fact that she can only use one arm (the other is in a sling) is very inconvenient. For example, she claims not to be able to make me a pot of tea; she can’t drive me around; she can’t walk the dog (though this is debated).

It was her idea to force me to go skiing with her, taking the dog for my companion.

The (main) trouble with my wife is that you just can’t argue with her, or you can but she takes no notice. Which I suppose adds up to the same thing. Not that I’m a misogynist, mind you.

So I used the tried and tested method of not saying anything to her, but instead working on (ie bribing) her children who are my step children and asking them to work on their mum by taking pity on a weak and weary Parkinson’s sufferer.

Of course I need to say why I didn’t want to go skiing. Well:

1. It’s cold and wet and my body thermometer is unreliable resulting in hot flushes (which my wife is, of course, an expert on)

2. It’s icy, and thanks to PD, I lack ability to balance

3. It’s expensive and I’ve had to retire in the face of the shaky wobbles

4. The dog hates snow

5. The beer’s rubbish

6. I can’t ski

7. ....that’s all...

Thankfully I was allowed to stay at home. We PD Warriors can be sensitive too.

Meanwhile news from the PD Warrior fitness circuit class is that, to keep our brains engaged, we are encouraged to chant examples from a particular topic such as capital cities, actors, sights worth a detour, football teams, makes of car and so on. Personally I’m looking forward to types of savoury biscuit, Shakespeare’s plays, crisp flavours and so on.

I have also picked up a leaflet on dancing with PD. There’s an interesting thought, given my history of learning salsa and rock n’ roll. Or not learning.

In the pub we talked about indentured labour, the shortage of NHS dentists, Chelsea FC, the royal household, 4x4 vehicles at the school gate, Scottish football, the economy and oil prices, the state pension, skiing injuries, my wife, Bob’s allotment in winter and students in general. No topic was debated as fervently as that of ‘whose round is it?’.

GOOD (AND LESS GOOD) VIBRATIONS: LIVING WITH PARKINSON’S DISEASE

This blog is aimed at people with PD and those without PD but with a thirst for knowledge ... and it’s mainly true!

This month I have joined a group called PD Warrior at my local hospital’s physiotherapy unit, having initially been anxious to avoid meeting other PD sufferers. Head in the sand, or what? PD Warrior information is scarce – I know because I have searched it on the internet and not found a lot; so maybe it’s a new thing, or perhaps it’s an Australian thing as the rare mentions you get have an Aussie skew.

The hospital physio persuaded me to try it because the group was aimed at people like me, mobile enough, but suffering from stiffness and related inflexibility. Added to which, PD Warrior seemed like a great name for a spirited attack on the enemy, otherwise known as Bloody Parkinson’s Disease.

A simple circuit was set up around a large recreation room with 10 stations labelled: eg. box step (4 marks to step back and forwards and sideways), overhead ball throw (bounce off the wall and catch ball), banded side step (rubberised material to stretch out, like a soft chest expander ... and so on). Each exercise lasts 2 and a half minutes, so the pressure comes from repetition rather than length or strength.

Good old rock classics accompany this light exercise. Some tunes even get us singing, particularly Ray Charles’ Hit the Road Jack.

At other times we are encouraged to chant names such as cities of England or cars or film stars. So we set off with London, Birmingham, Sheffield, Canterbury, Cardiff, Venice ... but wait a minute, isn’t Cardiff in Wales? And Venice is surely in Spain. Or perhaps Italy? So back we go ... Wolverhampton, Worksop (not a city?). Thankfully the 2 and a half minutes are up, although some geographic stickler will still be arguing about the eligibility of Glasgow.

Ten more weeks to go and I’ve run out of cities...

Over a wind down cup of tea we discuss the effect of Parkinson’s on our bodies and agree it’s vital to keep going and the Warrior exercises feel refreshingly good. No one admits to feeling as tired as I do though!

Meanwhile in the pub we spoke of the global financial markets, oil prices, Scottish independence, Burns night, the NHS, Jeremy Corbyn, Kingfisher versus Cobra and so on. For some reason we got onto famous people we’d met and I told the story of my parents being at a wedding of one of the Banks family of Sheffield. My mum asked the woman on her right what her husband (on mum’s other side) did for a living, and she replied that he was the England goalkeeper, Gordon. My dad almost died laughing...

THE SOUND OF ONE HAND CLAPPING

Some of this is true..... but first a bit of poetry that reflects my views on PD - to do with the fact that PD patients don’t necessarily seem to have anything wrong with them (but they do) and because I only seem to be a one handed shaker.

‘Nobody heard him the dead man. But still he lay moaning. I was much further out than you thought. And not waving but drowning’. - Stevie Smith

‘Two hands clap and there is a sound. What is the sound of one hand?’— Hakuin Ekaku

ONE HAND

It was an empty ache in my right hand that told me something was wrong and led to the diagnosis of PD. Two years later my left hand remains fairly normal with no significant tremors. It seems this can be quite normal: so the right side of my brain is producing dopamine fairly normally and aiding movement of the left hand side of my body. Nevertheless I still write, or more accurately, print right handed rather than left and wonder why my left brain cannot borrow a bit of dopamine from the right.

Aches and pains are right side biased and I have had a shake on my right side for maybe 40 years.

I drag my right foot but not my left.

My left arm feels fine when my right feels like a dead lead weight.

Why?

BRAIN BANK

So I’ve given my brain to the Queen Square Brain Bank for Neurological Disorders who inter alia investigate the causes of Parkinson’s disease and atypical parkinsonianism. Specific projects include research into how PD begins and how it progresses: the new methods called protoeomics could be key to developing a strategy to alter the course of PD progression and ultimately to stop the disease in its tracks.

DOPAMINE NEURONS

Notice of another fascinating and positive development in tackling PD came from the University of Buffalo, USA, via an old friend, Bob Emmerson based in Eindhoven, Holland, one of the funniest people I know (especially when beaming himself down, Scottie, into a supermarket car park mounted on an empty trolley). This is another illustration of how friends look out for me and ensure that I stay abreast of new developments.

PD is a degenarative disease involving loss of dopamine neurons in the brain, having a significant impact on patient motor skills. Essentially the Buffalo team recognised and overcame a key obstacle to cellular conversion which can now be manipulated to turn on a DNA modification enzyme so that dopamine neurons were produced. There is now potential for creating patient-specific neurons in the laboratory.

GYM CIRCUITS

I finally took up the offer of a place on a circuit training course designed for newish PD patients, (stemming from something called ‘PD Warrior’) having been too worried about meeting people worse in condition than myself. It was actually OK and we swapped old PD yarns while the physios set up the room. Then we did a series of ten simple exercises, each for 2.5 minutes.

I felt good and gently tired by the session’s end.

And at the end I asked my neighbour what his first name was and he said ‘Douglas’, (names have been changed to protect the innocent), but that he preferred to be known as ‘Tony’, which is what his friends call him. He’s ‘Douglas’ to the NHS as it’s his formal first name on all of the hospital paperwork. Now he’s used to it and it works quite well so that he sees ‘Douglas’ as the alter ego with PD, while ‘Tony’ is fit and well and has never heard of PD. Will try it myself!

AT THE PUB

This week at the pub we talked about the following: LouisVan Gaal (again), beer range, prices and quality (for a change), Simon Danczuk MP, Jez Corbyn’s reshuffle, estuary English and the glottal stop, venison, advertising on BBC, the cost of razor blades, Blackpool FC, Spotify, work on Bob’s allotment, thoughtless car parking, peanuts, Valencia, the French right. Unusually perhaps, some conclusions were drawn, but unfortunately I can’t remember any of them.

And according to the Guardian, branches of Wetherspoon’s are allowed to choose their own carpet design, so there are over 900 unique carpets. That is my ‘important fact’ for this week.

AT THE POOL

The Naked Men bemoaned the growth in the number of picture framing shops and the loss of family run grocers and admired my new blue Christmas trunks.