HELPFUL ADVICE

The dog doesn’t know I have Parkinson’s and cheerfully brings me a ball to throw and because I’m now enfeebled and disoriented the ball finishes up about 10 feet in front of me or even 20 feet behind me. The dog runs away with the ball and the game ends. Pointless for me but seemingly relevant to the dog.

But that’s not why I mention the dog – it’s because she has eaten one of the gingerbread houses that was standing on the kitchen worktop. If she appreciated the length of time put into the house, surely she wouldn’t have scoffed it? And since there were two houses why did she leave the other untouched? Perhaps a cat got in through the cat flap, but we haven’t got a cat flap any more.

But let’s get back to PD.....

After diagnosis I kept my Parkinson’s secret, afraid of what people might think; and generally people fall into two or three tribes when you finally admit to the ailment:

1. Heard of it but little idea of what it is: may have some erroneous ideas eg it’s a form of dementia

2. Have an older relative who has / had it (and frequently died with it)

3. Not heard of or unclear about what it is

Now everyone I know or meet seems to know about it and has heard of it since I went public: why keep it secret when your right arm is doing its own shaky thing? Best to own up and get it out of the way.

People do ask how I am and I tend to answer that ‘I’m fine’ which wards off further probes in the main.

TRY DRUGS?

But some people give helpful advice the latest of which is to try drugs. At a dinner party I was beset by two (inebriated) guests who insisted that drugs would make me feel a darned sight better. So I’ve looked into it. The Observer, for example, had a lengthy article (08.11.15) entitled ‘Dreaming of the billion-dollar high: How medicinal cannabis sparked a green rush in Silicon Valley’. The main import of the story is that legislation to allow consumer use of cannabis is spreading across the US, following the legalisation of medical marijuana.

In California, for example, you can get same-day delivery (within the hour!) of medicinal marijuana and voters are to consider the legalisation of marijuana for recreational use in 2016. Marijuana is unlikely to lead to a cure for PD but it may have a prophylactic (preventative) or acute therapeutic use, for example, for migraines.

Trouble is, my middle class aversion to risk and drugs makes it sound like dangerous ground and my only experience of drugs was in about 1970 in my first London flat when I tried some weed or grass – anyway it was green and soggy - and my flatmate rolled a lump up into a cigarette paper and we smoked it and got the giggles and that’s about all we got. A strong aversion to smoking didn’t help me tune in to the drugs. In any case it could have been dandelion leaves for all I knew.

Cannabis can affect learning, memory and sometimes anxiety levels, I’ve read, so watch this space.

COCONUT OIL

Another recommendation I’ve had for alleviating the effects of PD is to try Coconut Oil – my friend Chloe even posted me three pots of the stuff. One jar says it has a natural and healthy nutritional profile...has zero fatty acids...has good fats and cooks more effectively than olive oil, for example.

Anyway the chicken we cooked tasted good and certainly not of coconuts.

BEER

My friends at the pub are convinced that a good quota of real ale helps alleviate my shakes and in the Autumn edition of the research magazine of Parkinson’s UK, Progress, there is a short piece entitled ‘Can beer have benefits?’. It states:

‘...a chemical in hops...could slow or even prevent conditions like Parkinson’s. Unfortunately there’s no evidence that drinking a pint a day could prevent Parkinson’s, but this interesting finding could lead to new ideas for treatments.’

Please assume that I’m first in line for clinical trials.

And I’m up for a pint of Old Shaky when the time comes.

AT THE PUB

My friend Tony has read that red hair (his colour in youth, before becoming silvery grey) can show a leaning towards PD and is absolutely convinced that drinking beer can help ward it off.

Topics of discussion at the pub included: the Paris atrocities, of course, Bloody Sunday, Heart of Midlothian and Wojtek the bear - from Wikipedia: Wojtek 1942–1963; was a Syrian brown bear found in Iran and adopted by soldiers of the 22nd Artillery Supply Company of the Polish II Corps. He was later officially enlisted as a soldier of the company with the rank of Private, and subsequently became a Corporal. During the Battle of Monte Cassino, Wojtek helped to move crates of ammunition. The name "Wojtek" is a diminutive form of "Wojciech", an old Slavic name that is still common in Poland today and means "he who enjoys war" or "joyful warrior". Graham who is a Scot and Hearts supporter had attended the unveiling of a statue of Wojtek.

AT THE BATHS

The naked men discussed the bankers, the Aims market, Tony Blair and George Bush (2).

NEW WAYS TO COUNTER PARKINSON’S – WE HOPE

The NHS is doing a lot for me as in this week alone I have seen my GP, the speech therapist and an ear, nose and throat specialist (covering, inter alia, gagging, urology, drug dosage and tremors).

There’s a lot of support, but no cure for PD; however you can do a number of things to counter it:

1. shut your mind to the ‘no cure’ idea as my first wife did with pre-menopausal breast cancer a few years ago (nevertheless, she died);

2. try to delay its nasty effects (PD is a condition which is progressive, where parts of the brain are increasingly damaged, leading to tremors, slower movement and inflexibility of muscles) through exercise;

3. hope that a cure pops up and recently hope emerged (in The Independent) in the shape of a leukaemia drug called nilotinib (which sounds even better in reverse!)

According to reports from the US, a small clinical trial (a sample of only 12!) on people with Parkinson’s disease or a similar condition, dementia with Lewy bodies, were given small doses of nilotinib for 6 months with potentially interesting results. These included the return to life of almost inert patients, people apparently ‘stiff as a board’ are walking around, sitting down and bending their legs. One of the doctors who led the study said “we’ve seen patients at end stages of the disease coming back to life”.

Must say that I don’t fancy all this talk of end stages or being stiff as a board! But hey ho!

Other patients reported:

· Regaining power of speech

· Walking without a wheelchair

· Being able to undertake simple household tasks again

Putting the bins out was given as an example of a simple task! Maybe it is easy in the US as over here don’t you need a further degree?

Nilotinib boosts the ability to clear out proteins which accumulate in the brain cells of PD sufferers. These proteins are believed to trigger the death of brain cells which make molecules like dopamine which are needed for significant functions such as movement.

But doctors and Parkinson’s UK warn against raising hopes, so watch this space.

Incidentally, for all my swimming, tai chi-ing and boot camping I have no idea whether you can push back the end of life as we know it.....or not. But better to do summat rather than nowt.

Incidentally (again), next to the Friends of the Hospital reception is a free used book box with, on top of the pile, a copy of Wilbur Smith’s ‘A Time to Die’: do they suggest you read it only if feeling a bit peaky? Are only the first few pages thumbed because readers just die? Am I going completely off topic? Does it matter.

THE SCENT OF A WOMAN

On the BBC website there is a piece about ‘the woman who can smell Parkinson’s’. Joy Milne’s husband Les died earlier this year aged 65 after working as a consultant anaesthetist; he was diagnosed with PD aged 45.

Mrs Milne detected an odour on her husband and now there is a chance that her sense of smell could detect the disease accurately and rapidly leading to earlier treatment: she described the odour as subtle and musky and scented it occasionally. She joined Parkinson’s UK, the charity, and detected the musky smell again. Tests at Edinburgh University showed how accurate Joy Milne could be in detecting PD. So far the samples are small, but with 11 out of 12 positive results. The ‘odd man out’ was in the non-Parkinson control group and was diagnosed with PD eight months later. So effectively she got all 6 sufferers right as well as all of the non-sufferer control group.

This is all very important because PD is difficult to detect and the scientists are still using tests in the way Dr James Parkinson did in 1817 when he discovered the disease. They hope to find the molecular signature responsible for the odour.

Parkinson’s UK is funding further research at three centres on a sample of 200 respondents. Watch (or sniff) this space.

BORIS’S MUM

Boris Johnson’s mum is a professional artist of some considerable talent and was diagnosed with Parkinson’s in her mid 40s. She coped by using her left hand to hold her right hand steady.

Three years ago she elected to have deep brain stimulation to reduce her shaking. And after the setback of a subsequent brain haemorrhage she has successfully returned to painting. So we can do it, us PD people. Just give us a cure, eh?

THE NAKED MEN

Meanwhile down at the public baths I heard a conversation in the changing room that turned to barbers’ shops and pricing which apparently went as low as £6.50 for a short back and sides. The barber’s shop was described as a trans-sexual barber’s ie the same barber catered for both men and women. I suggested that the barber may in fact not be trans-sexual but may simply be catering for two genders ie men and women. The swimmers agreed and concluded that the barber must clearly be bi-sexual....

AT THE PUB

Conversation at the pub ranged across the welfare budget, beer prices, FIFA, Bob’s allotment, rugby referees, what a good bloke Boris is, crown green bowling. No firm conclusions were reached.

I was late because I couldn’t find my wallet which turned up on top of a packet of chilled filled pasta in the fridge. Cold and stiff like a refrigerated Parkinson’s man, ie me.

MY HANDWRITING

My writing is virtually illegible and I know because I got to Waitrose and couldn’t work out what half the items listed were. Example: bonking portent (baking parchment).

SUBSCRIBE!

Please subscribe to future email notices of these daft blogs. It’s easy – see box at top right. It costs nothing and I need readers to share the journey!

THANKS!

To Stewart, Maureen and Bob (who has an allotment) who have supplied the hopefully useful material in this blog. I supplied the rest.

THAI BRIDES AND TAI CHI

My friend Tony has gone to Thailand for two and a half months to see his “Thai Bride” (note it’s in inverted commas).

He responded to my last blog or two as follows:

‘Hello each from a warm and pleasant isle with a cold beer at hand. I read in the Parkinson’s blog that no real decisions were made (in the pub) last week, so I'll put my two and a half Bhats-worth in.

Re the shaky hand when cooking: I have observed whilst here in Thailand that cooking with a wok could be the answer as it involves a lot of shaking and banging about without any spillage and no apparent harm done to the chef’.

(Tony speaks as a man of experience who has had a live frog hop in and out of his frying pan when preparing breakfast). 

I hope he captured it and soothed its sore feet with buttermilk, but I’m not sure.

Tony continues: ‘Re Thai wives, God knows how you ostensibly intelligent men got to this subject (is Bob thinking about it?). (Bob has an allotment, which explains a lot.)

Well that's all from a small warm island not far from the Equator’.

Tony wrote much more about Thai wives but even I could not argue that it related even indirectly or at a tangent to PD. However, I’m going to make a very shaky link to Tai Chi. Ahem.....

TAI CHI

But before I get back to PD I’d like to comment on supermarkets and plastic bags, as Waitrose ran out of bags for life three or four days after charging for bags came in. How long have they had to get ready for the new era? Why did I have to buy a hessian bag? Why did I use two old butcher’s bags from the car boot? Smelling of mince...now it’s a week later, and still short of bags for life!

So, got that off my chest, now what about Parkinson’s?

Two out of three specialists I’ve seen have suggested trying Tai Chi and as I was down in the dumps too at the time decided to give it a try. Indeed in the first 6 months from diagnosis with Parkinson’s I’d have tried anything.

If Thai brides look after all a chap’s other needs, so Tai Chi covers all of the mental and emotional and physical needs they, ie Thai girls, might miss.

Put crudely Tai Chi is a form of slo-mo martial arts. So you defend and attack and skim and repulse. Led by a great leader in Enid Gill we follow her graceful movements in our clumsy ways (ie me as some are more graceful than others*). What I get out of it is elements of balance, control, walking confidently, hip rotating, looking up, and so on and so forth. All the things a PD sufferer needs when he tends to walk like a Lego man and trip regularly .

I’ve been doing it, ie following Enid, for over a year now and I am not sure how or where I’m going to, but the journey is a load of fun.

Tai Ji as it says on my bit of paper comprises 24 postures including Repulse Monkey Right Hand, Play the Fiddle and Grasp the Birds Tail on the Left.

Here are 5 postures only one of which I have made up (no prizes):

· Strike ears with fist

· Needle at the bottom of the sea

· Two fish

· Play the fiddle

· Pull the pint of beer with perfect head 

Watch Calendar Girls for Helen Mirren’s own flexible versions of Tai Chi moves.

A more educated report on Tai Chi to follow – promise!

OTHER STUFF

Meanwhile I got myself swimming again and was welcomed back by the Naked Men in the pool changing room. Conversation included the iniquities of 1% savings rates and the rotten reaction of many Labour MPs to Jeremy Corbyn’s electoral victory.

In the pub conversation ranged from Thai lady girls (a variant of the Thai Bride topic), to Mourinho’s thought processes, to that old perennial, beer quality. Suggestions for new careers for me included Maracas player. Nuff said.

*I have failed at rock and roll and samba handicapped by PD, so Tai Chi seems the best default position available. But I am always open to suggestions.