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).

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THANKS!

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