Month: April 2025

Joining the Parkinson’s club

Every person with Parkinson’s can remember, often in exquisite detail, the moment when they were diagnosed and, in essence, joined the club. I’m tempted to capitalise “the club”, so pivotal will its impact become in subsequent years. For me, 11 December 2006 was the date in question and, rather appropriately I thought, 11 AM. Like an armistice in a way only this amounted to the beginning rather than the end of hostilities

My diagnosis appointment was perfunctory but decisive, leaving no wriggle room. As time passes the detail fades a little. But it comprised all the usual stuff – walking up and down, finger tap and so on. It didn’t take long. The neurologist in question, a German trainee from Düsseldorf, handed me two or three leaflets detailing the condition and invited me to return six months later. In the meantime, I was referred to Kings College Hospital for further investigation and potential recruitment into clinical trials.

I don’t recall being particularly shocked by the diagnosis or the means of its conveyance to me. I have been a scientist all my life and appreciate clarity of thought rather than medical platitudes. “Give it to me straight, doc” has been my motto for as long as I can remember. And I think that’s the point. It worked for me but I suspect this approach suits rather few.

At the time I was diagnosed, there was and still is a degree of controversy about the means in which people are inducted into The Club. There are, broadly speaking, two schools of thought here: on the one hand there is the gentle, soft-spoken and encouraging “we will help you all along the way” approach. On the other hand there is the, short sharp shock “get it over quickly” means of addressing the diagnosis.

There is of course a conundrum here. Parkinson’s is a long term neurodegenerative condition for which there is no cure at present. That’s the bad news and, grim though it is, it needs to be imparted to the patient. But it is also survivable, and can even be a source of inspiration, helping to refocus, in a positive way, the individuals life.

This duality has been a particular problem in terms of raising awareness. Paint a picture of unrelenting misery and the money positively gushes in. It’s a terrible condition and research is needed. Conversely, too fluffy an image, all smiles and laughter, pulls the rug from under the fundraisers’ feet. If the condition is that much fun we should all join. The truth is that it is both and also neither. Not surprisingly, few are able to walk this tightrope with conviction.

The diagnostic meeting is critical. At the end of the day, certain pieces of information need to be conveyed to patients at that first diagnosis meeting. Yet at the same time it’s important to acknowledge that once the P word is uttered, patients become immediately deaf to any further information. Most patients would be unable to tell you their birthday.

Given all the time in the world, one might wait until the P word has been absorbed before trying to pass over more information. But that situation doesn’t apply. In 15 minutes one must go from assessment, through diagnosis and onto treatment options. That’s a lot of big stuff to get across. And some things simply can’t wait six months until the next appointment. By that time, they will have Googled everything about Parkinson’s both good and bad. Books with titles like “I cured my Parkinson’s by colonic irrigation” encourage them (wrongly) to be feisty and challenging.

This is the point where I’m out of ideas. I can recognise the difficulties but I have no more to offer in terms of solutions. One thing we do know is that patients who are either given or acquire a positive outlook at diagnosis fare better than those who see it (wrongly) as a death sentence.. I’m pleased to see that, since my diagnosis, getting on for two decades ago, practice has changed. Increasingly diagnosis is made by neurologists rather than dilettante GPs, unused to imparting such a nuanced diagnosis as Parkinson’s. With Parkinson’s predicted to reach pandemic proportions over the next quarter-century, how we encourage positivity will have a huge bearing on outcomes for patients. We may not recognise it as such yet but we are part of a huge experiment that may even have bearings beyond Parkinson’s.

Melatonin mayhem

I get the weirdest dreams with melatonin. Let me give you an example:
I am a spectator at the Kokugikan stadium in Tokyo. The last bout of the day in which yokozuna Hakuho faces yokozuna Terunofuji. An explosive bout and one in which Hakuho prevails. He punches the air in victory (something yokozuna never do) and I decide to head for the exit to beat the rush of people leaving. I know a shortcut. Trotting along one of the aerial walkways in the stadium (there are none in reality) I meet Hakuho, armed with a revolver. He fires a shot and I feel it hit my shoulder (I think that corresponded with my pain as I fell out of bed.).

Suddenly we are in dense green forest in Greenland, walking along a long straight path from glade to glade with an unidentified girlfriend. We say little or nothing. The light is a beautiful dappled green , bright among the tall pines. Our breath and footsteps are the only sounds. As we walk, it starts to snow and by the time we emerge from the forest, the snow is more than a metre deep. Progress is slow but somehow we know that we have to reach this tiny chapel in the middle of a frozen lake.

As we reach the church, the girlfriend says “open the communion wine and choose a gun. They will be after us”. Suddenly there is now a third person with us. Unshaven, he speaks only in grunts. While I rummage around for glasses in the sacristy, he drinks from the bottle. Claret not Burgundy I note. There is a smell of incense in the air. We know “they” will be here by nightfall.

We wait and eventually, emerging from the fog are soldiers, perhaps a hundred, skeletal figures in bearskins tramping and stumbling through the snow. They open fire in a hail of bullets and as I am hit, I wake up. I am on the floor, wrapped in my bedclothes. It takes me a minute or so to work out where I am. I can’t find my wallet. Or the girlfriend.

Global economic Armageddon?

Tariffs, tariffs and more tariffs. There’s something about this whole tariffs farrago that is either ludicrously complex or exquisitely simple and I can’t quite decide which. But there are many players in this sequence. Let’s pick a single example of a country that makes cars and sells them to the US – we’ll call it LITTLELAND – that exports £100 million of cars to the US in the form of this 10,000 cars manufactured by CHEAPOCAR at £10,000 each. It costs CHEAPOCAR £8000 to manufacture each car. So the initial profit to CHEAPOCAR is £2000 per car (which incidentally will be taxed by the government of LITTLELAND) as it leaves the factories to the export company EXP2US. As the cars enter the USA, EXP2US is used to paying small import duties (let’s say 2%) to the US government. This makes each car imported into the US cost the dealers (SCREW-U) £10,200. SCREW-U will then sell the cars on at, let’s say a markup of £4800 making each car available to the customers at £15,000 apiece. SCREW-U makes £4800 profit per car.

Then let’s imagine a US president – we will call him FLORIDA ORANGE – who decides on a whim to increase the import tariff from 2% to 20%. This takes the price to the dealers from £10,200 to £12,000. Each car imported will now generate £2000 rather than £200 for the US revenue. SCREW-U now have cars costing them £12,000 each instead of £10,200 each. They now make £3000 less profit per car (a decrease of 37.5%)

Let’s summarise:
LITTLELAND – country of manufacturing cars
CHEAPOCAR – makes cars and exports some to the US
EXP2US – transports cars to the US and arranges import
SCREW-U – car dealer

These are the principal areas in which companies might have financial interests. Now I know it can’t be this simple because otherwise it would not have completely baffled the economists as to the rationale for these tariffs. But President FLORIDA ORANGE, clearly believes that he knows better than these proven field-if tested economists and that he can apply business rules to countries. I understand, and please correct me if I’m wrong, that FLORIDA ORANGE has a number of bankruptcies to his name so perhaps we should take his ‘famed dealmaking’ with a pinch of salt.

So who is going to pay for this nonsense? FLORIDA ORANGE clearly believes that it should be LITTLELAND which will have to pay £2000 per car to the US Treasury either directly or through CHEAPOCAR. Others may see it differently. But as long as the money is paid it matters little whether it comes from CHEAPOCAR directly, watching its profits from the individual cars evaporate or the same for LITTLELAND’s government. As for EXP2US, there is little incentive for them. Any money they might make will be eaten this up by the raised tariffs. The only obvious area of slack in the system lies with SCREW-YU, which will either have to take less money per car or pass the buck directly to the customer, presumably with some absurd justification. In the end it comes down to a very simple equation. Either Americans pay more for imported cars, or they don’t. If they don’t, then CHEAPOCAR suffers, making fewer cars.

Will somebody help me out here – because to me, this looks like global economic Armageddon. Please tell me I’m wrong. And why.