EXERCISE VERSUS PD

Anyone and everyone associated with Bloody Parkinson’s recommends plenty of exercise, such as walking and swimming, for the PD sufferer: for physical well being, a healthy mind and to produce beneficial serotonins.


WALKING

So last week led by two friends, Stuart (a Ramblers Society walk leader) and Tony Bennett (no relation to the great crooner) three men and a dog went for a 7 or 8 mile walk from Ribblesdown to Coulsdon across four ancient Commons and through the glorious Happy Valley in South London. Now 7 to 8 miles might not seem far, even for a PD sufferer, but it was up hill and down dale, beginning with a near vertical chalk path winding up from Kenley Station towards a hot blue sky in the far distance. With one nice and much needed stop for a pint of St Austell Tribute, we eventually reached the end of the walk and a steep descent to Coulsdon Station where the dog disappeared to roll in a very freshly made cow pat (we called it cowsh when camping in my youth).

With no water in site and nothing to scrape it off we boarded a London bound train to Clapham Junction with a pong in the carriage you could have cut with a knife. Then transferring to a second commuter packed train where the crush intensified the mingled aromas of cow and dog. Still, at least I reckon myself able to walk 10 miles on the flat on a good day and that’s encouraging.

Hosed dog on return and felt a lot cleaner myself too. Will take scraper and bucket next time.


SWIMMING

Meanwhile, as a kid I was a bit of a champ at swimmin’. So I have started to plough up and down at my local pool early mornings before the worst of the rush

Singing in my head Loudon Wainwright III's wonderful Swimming Song:

This summer I went swimming

This summer I might have drowned

But I held my breath, I kicked my feet

I moved my arms around

I moved my arms around 

The pool is divided into three lanes: fast in the middle, medium to the right, slow to the left. For me the fast is too fast, the medium is a bit too fast and the slow too slow. And the slow attracts what I like to call the frustrating nurdlers.

What’s a nurdler? Well it’s a technical term for a swimmer who doesn’t swim or can’t swim in heavy traffic, but who takes up space in the slow lane and who does one or more of the following:

• Bobs or bounces up and down the lane, often hopping on one leg
• Holds a discussion group at the shallow end making turns impossible
• Swims half lengths and turns around in the middle of the lane to swim back
• Hangs on the side and kicks their feet into mid lane
• Goes down the wrong side of the lane against the traffic
• Invents a new stroke and insists in testing it in the slow lane, e.g. feet first backstroke, side stroke or butterfly with a buoyancy board clamped between their buttocks (I’m clearly making this one up) 

The nurdlers of course reject the beginners’ pool which generally stands empty.

Swimming can be a drag what with finding and getting your kit ready, getting trunks on and getting dressed afterwards: not to mention the repetitive nature of lengths, although singing or meditating helps pass the time. Tried whistling but sank.

Since I am sometimes reluctant to go to the pool (cold weather, lost trunks, laziness) my wife has created an incentive scheme based on me wearing the paper wristbands they give you to enter the pool until I have 3 proofs of purchase so to speak. At which point she cuts off the wristbands and rewards me with what might be termed ‘an intimate show of affection’.

I suppose I should end on a PD note? To quote from the PD Specialist Nurse: “(Mr Jackson) has on and off constipation; this is controlled by some oral laxatives”, to which I observe: “more on than off”

Note to self: SELL DOG – BUY CAT.

WHAT ON EARTH AM I UP TO?

I have given my body to medical science. Twice. Not deliberately, but because of a mental aberration. It seems that i’ve given my body to the London and South East medical schools and to the Queen Square Brain Bank for Neurological Disorders. I hope to sort out this confusion before a tug of war starts

I also carry two plastic cards that state that I’m a tissue donor and what to do in the case of death ; and a Parkinson’s card that states what’s wrong and that I may have a tremor or uncontrolled movements, I may suddenly be unable to move, can be slow or unsteady on my feet, have difficulty in speaking or writing. The card ends ‘I can hear and understand you, please give me time’ (particularly if stuck in a turnstyle)

I’ve not taken all this lying down, although at times I find lying down the best thing to do. So, I’ve tried to list, in no particular order, the main things I’m doing to combat an enemy with no cure.

Tai Chi: oriental exercise regime, like martial arts in slo-mo: good for mental and physical karma and balance: links to yoga and meditation 

Mindfulness: positive thinking in the present, meditation methods, gives you a positive way of thinking and helps stop rumination

Trainer: weekly one hour session designed to give strength and flexibility. Can exercise hold back the power of PD to wear you down? I’m not certain there’s an answer, though you can certainly try. We work on walking (though not like a Lego Man!), getting up from a chair and other moves

Blogging: getting my own back on bloody Parkinson’s and sharing the load with you, dear reader

Smiling and looking up rather than down: tackling the PD tendency to look vacant and stare down at the pavement - this may sound daft but my wife has to waggle her ears to make me laugh and don’t worry if the person at the checkout thinks you are having a bad day! 

Physio: solutions to gagging reflex and trouble turning over in bed

Swimming: weightless exercise with a dose of wild swimming: below I’m coming out of the water at Filey 2 weeks ago. Brass monkeys all around......

Walking the dog: practising my new way of walking based on ankle and leg strengthening exercises and a determination to stride out and not trudge. You don’t necessarily need a dog.

Shaky right hand: half a dozen pressure balls from Amazon

Bladder control: if you have seen Still Alice you’ll have seen Julianne Moore as the Alzheimer sufferer failing to find the bathroom in time: well PD gives you similar problems! See the doc and think before you go out or leave the pub!

Staying awake: to overcome the tiredness caused by my PD I try not to stay in bed all day, though I often feel like it, and instead limit my snooze to 40 winks in an armchair

Can’t write or type: both sets of actions are limited by PD. Writing has become one long wiggly waggly illegible line and typing reverted back to 2 fingers some time ago. Even though I try to control the shakes I find myself typing the same letter several times over, so blog is often bbbbblog and so on. Practice writing in separated letters and try voice recognition

Learn French: I have joined a fabulous 2 hour a week class in French: brilliant teacher, brilliant students and learning experience. Keeps my brain cell working

To come: we are exploring sculpture classes (use of hands) and singing rock or folk (keeping the voice strong and not squeaky)

Other: I’m assured by my brother in law that Judy Dench tries to make sure she learns 3 new things a day. Mine are England are no good at cricket, not as good as the old colonies at golf and doesn’t the football season come round quick?

SIGNS

Can you tell Bloody Parkinson’s is on the way?

If I look back, can I recall any signs that might have signalled that something or other was headed my way? Signs that might have driven me to the doctor earlier? Well I have had a cup of tea and saucer rattle in my right hand for aeons and maybe 30 years: I put it down to nerves among small groups, business meetings and the like. My right buttock sometimes shook when I peed – unnerving or what? My handwriting was getting smaller and smaller and turning from a clear if girly script to a wobbly line. My bladder was insecure: ie if I felt like a pee my bladder could play the trick of letting go as I put my key in the front door, rather than waiting for the lav. Most peculiar was the right leg twitch that followed love making, or it may just have been the earth moving?

In client meetings my right hand shook as I scribbled my linear and illegible notes. My right hand would do a fandango when I wrote and when I signed a cheque. Throwing a ball seemed somehow more difficult, so I’ll still never play for Yorkshire. My clever bar room trick with a matchbox lid became impossible. Getting off a bus or tube train seemed tougher than before as the hand grips moved to and fro with the vehicle’s movement. Fingers and toes cramped up in bed or just suddenly at mid day, while my right index finger would go rigid without warning. So rigid that I felt I could break it off like an icicle.

A simple test for the disease is to draw a spiral or snail. But medical experts aren’t always as expert as they seem as the Prof’s snail doesn’t come anywhere near my snail:

VOMITING INTO THE HENRY

To show you that life goes on as normal, in spite of a diagnosis of PD, last week the French student who lives with us vomited on the bedroom carpet and hoovered it up with the Henry vacuum cleaner. This meant we took Henry to the man who mends them saying we’d found green slime in it and the engine had blown. He wrote it off as a dead loss surmising that a person unknown had thrown up inside it (i.e. taken the top half off and aimed right into the poor little machine). We, of course, only go and buy a new Henry and as true discreet Brits say nothing to the student. Which means we aren’t sure how the gloop got inside the Henry and so it’ll probably happen again.

That night at the pub the old curmudgeons debated whether pound shops represented value for money or not. The answer was yes and no.

DEPRESSION

PD gets you down – you feel like Sisyphus condemned forever to pushing the stone uphill – not conducive to happiness. One stone followed by more...and more...See illustration.

About 6 months in to PD I got depressed about my illness, work, finances and so on so I couldn’t sleep. Or get out of bed. Or stop crying into the pillow. I hadn’t felt so low since my first real girlfriend gave me the push in 1968. And just for the record ‘real’ in this context means flesh and blood rather than any alternatives.

Maybe it was something to do with lowered levels of dopamine? Maybe PD fatigue – all those shakes

To ‘cure’ my depression we decided to throw the balls in the air and force me to take on some new challenges: start taking the first drug, see a psychotherapist, go swimming more often, walk the dog more often and further, start French lessons, get a trainer, do Monday night quiz night at the pub, start Tai Chi, go to the pub for codgers’ night with the boys, and say yes to activity when I’d prefer to go to sleep. A mix of exercise for body and brain, a means of getting out and of filling time.

Therapy was part of the package and my GP sent me to their in house psychotherapist who listened to me ruminating about being a complete failure. She was a wonderful listener and in a few short weeks I’d exhausted my collection of moans and groans, and in particular talked about stopping the rumination and self flagellation that was going on. Therapy worked!

Rather than take anti-depressants I opted for a Mindfulness course also recommended by my GP: Mindfulness is all the rage and is claimed to help with long term chronic conditions, low mood, recurrent depression or stress, difficulty in relaxing, sleep difficulties related to anxiety.

It’s based on stress reduction and cognitive therapy, breathing meditation, body awareness: so far so unclear.

More relevantly (and to paraphrase) it means getting out of old bad ways of thinking, becoming more aware of thoughts, feelings and body sensations, getting out of mental ruts and problems of the past. My course, while described as not appropriate to major life crises, seemed to attract other people suffering from depression. The course might help us to a greater sense of wellbeing, improved concentration, relaxation, ability to deal with stress, get deeper and more restful sleep, improved mood, improved relationships. A course is a small price to pay relative to depression.

Mindfulness also taught me to meditate by using the body scan (deep breathing complementing a slow scan of the body from top to toe) and adapting it so I could throw out dull negative thoughts and replace them with cheery, often sleepful thoughts. The body scan is simply deep breathing and thinking from your left toes to your right toes and onwards up your whole body to the crown of your head. By the time I reach my knees I’m dropping off, having forgotten all about my troubled ruminations. Try also closing your eyes on the top of a bus and listening to the sounds around you.

The local NHS rehab unit have also provided therapeutic help: starting with speech therapy, addressing the likelihood of developing a squeaky voice, food particles trapping themselves in my windpipe, gagging on a toothbrush. No big worries for now. Followed by occupational therapy: I cannot wear 501 Levis any more as the buttons are too difficult (try 513s with a zip). Finally physiotherapy which starts tomorrow.

Tonight at the pub we discussed the price of beer, Greek debt and the Euro referendum. No conclusions were drawn.

THE DRUGS

I was reluctant to start on drugs till I had to, in case I used up their potency and accelerated my descent into impotency; and then the shakes increased so my work was affected, clients noticed the tremors. I lost weight and got depressed so we, my wife, the docs and me, had to take action. One drug seemed to be the best start point and contains two medicines: levodopa which the body changes into dopamine and benserazide which allows more of the levodopa to get into your brain.

Now I have never been one to read the back of packets, but this one intrigued me – and the notes had a section called Impulse Control Measures – which said you may experience an inability to resist:

· A strong impulse to gamble excessively despite serious personal or family consequences

· Altered or increased sexual interest...for example an increased sexual drive

· Uncontrollable excessive shopping or spending

· Binge eating or compulsive eating

To which most of my friends ask helpfully whether you can have all four at the same time and make a day of it. If so, could they try it too? You can have your Viagra.

Mental problems could include feeling excited, anxious, agitated, aggressive or disoriented (feeling lost). Or like being at a local derby or cup tie, perhaps.

Also you may start believing things that aren’t true, hallucinations (seeing or hearing things not really there), losing contact with reality: feeling sleepy, or falling asleep suddenly.

Indeed a nurse had already asked me if I ever caught glimpses of people out of the corner of an eye or even following me, who disappeared when I turned round, to which the answer was no, but I had certainly been followed by an imaginary dog seeking imaginary biscuits.

That night in the pub we talked about the Cabinet Office, the Civil Service and its hierarchical structure with particular reference to the level at which you got a rug for your office floor. No one was interested in me and my disease.....