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.

BLOODYPARKINSONS: OR LIVING WITH PARKINSON’S DISEASE

WHAT DOES A BLOG DO FOR ME?

The following is mainly true.

I’ve got Parkinson’s Disease, in case you didn’t know. Things could be worse, of course, because I could have contracted Alzheimer’s, Motor Neurone Disease, Multiple Sclerosis or any of a variety of cancers, or anything else just too horrible to countenance. An old friend, Stewart, made me think about it after he told me he’d read my last blog about the impact of PD on my physical movement and that it had made him think that it could have been about growing old in a normal way. In other words, about him or just about any of our 60/70 year old drinking friends.

With or without PD, as you get older you get more tired, more stiff, more cranky (I think). It happens to all of us if we live long enough. Perhaps like Kris Kristofferson and Joan Baez sing in the song Hello in There we should talk to older people, spare them time and enquire whether someone really is at home in there.

But thanks for taking a look at my blog and maybe reading it. I hope you are enjoying it, even learning a bit, but even if you aren’t enjoying it or find it self-serving or moaning drivel, I’m getting a lot out of it and thought it time to explain why:

1. It is my way of getting back at PD; having a joke and a bit of a poke at its expense

2. I enjoy the creative act of writing it

3. I enjoy reading it at the draft stage, and at the finished stuff on the net stage where I coax it into shape

4. I try to entertain and inform

5. It makes me want to learn about PD so I can pass on some of the more relevant messages

6. And I use up time (because I have more spare time to waste, thanks to PD and early retirement

GETTING BACK AT PD

I see PD as the insidious enemy, to be attacked at every opportunity, like Harry Potter and the enemy Dementors (incidentally, if you aren’t familiar with the songs of Iris Dement try ‘Our Town’ – makes me cry anyway).

PD doesn’t announce itself but creeps in uninvited through the back door when you don’t expect it and because of the simple tests for it you have no idea of how serious it is. It’s probable too that you have no idea what it means to do to you in the future. The medical profession could be much more up front at the outset about what it means to live with PD and what the future holds. I’d rather know the worst and find out what I’m dealing with than the alternative.

THE CREATIVE ACT

I worked in market research all my life, so I wrote many reports about consumers, products and advertising for over 40 years. Serious subjects demanded serious reporting, but I’d try to put in little stories, anecdotes, things real people said to enliven matters. Like the black 20 something year old who went round tasting the test alcohol products more than once and who was accused by our supervisor of trying the drink more than once said ‘that’s the trouble with you honkies, you think we all look alike’.

Or the student who claimed that a certain spirit drink was so beneficial that he drank it ‘before dinner, after dinner and when I’m sexing the woman’. I wrote in the report that the product is very versatile.

Having been so dry in writing my daily research reports, I now loosen my collars and cuffs and try to write a riff on PD without treating bloody PD as seriously as it expects to be treated.

READING DRAFTS

I work by shoving stuff down in small notebooks, then creating a topic heading, followed by a draft of a paragraph or two, which eventually, matures into a draft of the full blog.

This isn’t a job it’s a hobby and fun, where I can polish my efforts till the cows come home; a blog can always be improved.

INFORM AND ENTERTAIN

This is where I can be serious and / or silly. Using often feeble links to PD to launch a précis of a report on a new technical development, or about moving closer to a possible cure; using feeble excuses to introduce a joke stretches my material (sometimes beyond the limit!).

LEARNING ABOUT PD

People now send me articles and links to PD-related topics which I can screen and pass on, which helps us all, I hope.

EDUCATED PEOPLE LIVE LONGER

I just heard someone say it on the radio so it must be true. Now I’ve been forced to retire I have no excuses but to read, listen, watch and learn.

A FOOTNOTE ON LIFE AND DEATH

I saw the Speech Therapist for the final time just before Christmas and mentioned that I’d already been into the hospital once earlier in the day. She asked what for and I answered ‘for my skin cancer autopsy’....I meant biopsy. And apparently I haven’t got skin cancer.

AT THE PUB

 

At the pub we discussed Donald Trump, the disappeared, Afghanistan, Louis Van Gaal, beer quality, Xmas, partridges, steak prices, sentencing policy, Star Wars, surgery receptionists. Most scary? Surgery receptionists by a country mile.