BLOODY PARKINSONS: FAME AT LAST

This Monday morning (18/04/2016) I was giving my opinion of Parkinson’s Disease on Radio 5 Live’s ‘Your Call’ programme – Nicky Campbell’s radio phone in. The subject was Parkinson’s Disease, its impact on sufferers (127,000 in the UK), on relatives and on friends. It’s a great programme and it contained a lot of helpful stuff. 

Find it here: http://www.bbc.co.uk/programmes/b077ckty. Listen to the whole programme or go straight to 57 minutes 17 seconds to get a couple of minutes of my opinions of living with PD.

When I called in to the show at 9 o’clock the BBC person said they’d call back in 5 minutes, but it took more like 55 minutes, which was plenty of time for me to shake uncontrollably down my right side. Perhaps the producers of the show were checking out my blog to ensure that the worst language was bloody?

Listen to the whole programme and I think there is some very good advice for all of us!

COMBATING PARKINSON’S: BY LEARNING FRENCH

My name is Peter Jackson and in June 2013 I was diagnosed with Parkinson’s Disease, or Bloody Parkinson’s as I call it. And in case you hadn’t noticed, Bloody Parkinson’s is also the name of this blog. Note too that the opinions are all mine and therefore not entirely reliable. 

Parkinson’s attacks the central nervous system, reducing the brain’s ability to control movement. PD is something most of us have heard of: associated with tremors and stiffness, incurable and crippling with lots to look forward to, like blindness, deafness, squeaky voice, choking and a wheelchair (actually, haha, it’s not as bad as all that!).

However, there is also a risk that my cognitive and memory functions will deteriorate as PD progresses; so you have to use these functions and stretch them, just as muscles need a stretch too. 

PD is like experiencing an accelerated old age. So with the support of wife and family I drew up a strategy to fight back at this shadowy enemy. Monday became fitness boot camp and a pub quiz, Wednesday Tai Chi and the pub old curmudgeons’ debating or grumbling society, Thursday circuit training, Friday swimming. Saturday and Sunday take care of themselves! Which still left a gap in the week to fit in a brain stretching activity on Tuesdays – advancing rusty school French so that I could go beyond ‘deux bieres, s’il vous plait’.

On the phone the local college reassured me that French 3 was about right for me, but that I could adjust up or down when I’d attended a session or two. What can I say but that classes have far exceeded my expectations. The teaching is amazingly good: effective, lively and fun. The class comprises an eclectic mix of friendly, funny people with a wide spread of backgrounds. My French has improved in leaps and bounds. And by the way, I can now order (but not carry) three beers in French!

I may yet renovate my remaining brain cell....

MEANWHILE AT THE PUB

At the pub last night we talked of many things, most of which I forget. But what made it memorable was the train crash which occurred at around 8pm. Not a real train crash, but there is a model train that ‘flies’ round a rail circuit above the drinkers’ heads in the main bar. The engine for once, tired of circling the hubbub, continued round and round as its only carriage was thrown out into thin air, narrowly avoiding the heads of the throng of drinkers, some of whom required another drink to aid recovery.

I’m not sure what Health and Safety would say, but for the rest of the evening the little engine steamed round the track unencumbered by his carriage and the throng went back to their beer, still muttering.

IN PRAISE OF THE PHYSIOS: LIVING WITH PARKINSON’S DISEASE

This is one man’s shaky view of life with PD and it’s true - in parts. And talking of parts, like a lot of patients of the NHS I find the service, like the curate’s egg, good in parts. Mostly good, but occasionally poor; at other times in between. And one area in which as a PD patient (albeit with urinary issues) I have benefited is from the Physiotherapy department of my local hospital.

There are three sub sections: speech, occupational, and the physical side eg movement and strength are very relevant with PD.

Speech therapy people picked up on my worry that my voice was fading and gave me a two week course of voice exercises, known as the Lee Silverman LOUD system. It’s fun and involves lots of AAAAAAAHING. It’s reassuring that the dog can now hear me calling, even if she takes no notice.

Occupational therapy listened to my usual moans and groans and in particular my concerns about the fatigue and demotivation that I suffer. Then took two minutes to find an article from the parkinsons.org.uk website headed ‘Fatigue and Parkinson’s’. It defines fatigue, looks at fatigue’s components and PD and its causes, treatments for fatigue and what you can do about it. Then they set about sorting out the problems I encounter.

Physiotherapy in a more fitness-related form has given me my PD Warrior circuit training which I love.

In all three sub sections of physiotherapy, I was asked with genuine concern what were my own concerns. Then these lovely people went away and came back with a plan for me and finally carried it out. Fantastic! A part of the NHS actively improving this old whinger’s standard of life!

MEANWHILE AT THE PUB

We talked, inter alia, about Donald Trump, passports and border controls, fish, Valencia, open markets and their decline, Portugal, Spain, General Franco, golf, Brexit, Ian Duncan Smith, bowel cancer testing, dislocated shoulders and George Osborne’s strike on the welfare budget.

Sadly one of our number (easily the most argumentative and unreasonable) is out in Thailand. So discussion passes rather quietly these days.

Out of the blue the bar manager says I look like Jason Bradbury, to which I naturally answer ‘whose he?’. Apparently he’s a TV presenter and children’s author, best known for the Gadget Show. The usual crowd at the bar were tickled pink and several requested my autograph. Haha, I said in a chilly voice.

ODD ADDRESSES

On the way to the hospital the bus stops at Gibbon Walk. Who names roads that people have to live in after Gibbons? I look out of the bus window and there are not only no gibbons, but no one walking like one either.