Flying first class

Thursday 13 February 2020

Today I am flying Emirates first class from Dubai to London.

It’s awesome. Some say it’s the best first class in the world but I wouldn’t know about that. This is probably the only time in my life I will fly first class on an airline like this.

The experience starts with the chauffeur whisking me smoothly to the airport in his S-class Merc. He drops me off at the separate check-in section without any queues at security, naturally.

I head to the first class lounge, a massive oasis of calm in a heaving airport where the staff outnumber the passengers. I elect to have a la carte fine dining: delicious sashimi to start, veal saltimbocca for main, and a fruit and cheese plate to round it off. As expected, the wine is also excellent. I don’t bother with the spa or cigar room, but I do use the sleep area for a while after a glass of 15-year-old Glenfiddich.

Once on board, the beaming stewardess hands me a hefty goodie bag. Bulgari amenities, gourmet snacks galore, pyjamas for the overnight journey, slippers, moleskin notebook and pen.  She offers me a pre-take off drink. I don’t hesitate in my choice: a glass of Dom Perignon 2008 Champagne.

There’s a fresh orchid in my compartment. Enough gadgets for a James Bond movie and more bling than, well, an Emirati 5-star hotel room.  A screen as big as my TV at home, and so the list goes on.

How did I get here?

I’ve done a few business trips to the Middle East and saved up some miles. It turns out that that the Emirates loyalty scheme is not very generous. Surprisingly, BA’s Avios are much better for getting reward flights.

With my working days numbered, and business travel becoming increasingly exhausting, it made sense to use my Emirates points for an upgrade, rather than wait for a reward flight that will likely never come.

So I’m making the most of the absurd luxury while I still can. Things will start changing soon. I will need to cut back further at work, stop the travel, and retire in two or three years with a pension pot that will very much put me at the back of the plane, if indeed I’m on the plane at all.

We will be landing soon. Whilst I enjoy my scrambled eggs and cup of tea, I reflect on the best bit of my journey. 

Taking a morning shower at 41,000 feet. Obviously.

Hope fatigue: will there ever be a cure?

Saturday 1 February 2020

At the start of 2020 there was a flurry of posts on various Parkinson’s forums about all the promising research and clinical trials in progress, not to mention a few puns around “20/20 vision”.

Rather than repeat it all here (and probably get some of it wrong), I would refer you instead to The Science of Parkinson’s take on the topic, The Road Ahead: 2020. It’s a long article so I’ve attempted to summarise the drug trials referenced at the bottom of this post.

Wow. There are a lot of candidate treatments currently being tested, and many threads of more fundamental research also in progress. But we’ve been down this road before.

One thing that Dr Simon Stott alludes to in his post is the idea of “hope fatigue”. Despite the long list of therapies currently in clinical trials, the sobering reality is that the underlying cause of Parkinson’s is not understood, the different types of Parkinson’s are not fully identified or understood and there have been no significant new drugs since the discovery of levodopa and the dopamine agonists in the 1960s. In the last 50 years or so, there have been numerous headlines about promising new medicines that have all come, essentially, to nothing. For long sufferers of the disease, hope fatigue is a very real phenomenon.

Of course, eventually there will be a cure, or at least treatments to improve life with the disease. The human race is too smart, and the collective effort being put into neurodegenerative diseases too great, for us not to figure something out.

The real question is when? Will there be a cure, for example, in my lifetime?

Crystal ball gazing is a hazardous pursuit, but let’s see what the data tells us.

Firstly, let’s look at the amount of Parkinson’s research. A count of research papers on PubMed with the tag “Parkinson’s” reveals that the number of papers published has quadrupled over the last twenty years.

Compared to other neurological conditions, Parkinson’s doesn’t do too badly in terms of the amount of research published. But it is dwarfed by research into conditions like diabetes and the work across different types of cancer or even HIV.

What about funding for research? We would expect this to be correlated with the number of papers published.

After gradual reductions in real terms over recent years of the amount that governments in, for example the UK and the US, have been setting aside for research across all the medical sciences, is on the increase. For example, the United States Congress recently passed its budget for Fiscal Year 2020 which included a $2.6 billion increase for the National Institutes of Health (NIH), bringing the agency’s budget up to $41.46 billion.

However, Parkinson’s only gets a tiny slice of the government research funding pie. More significant is private funding for research. The biggest source for this is the Michael J Fox Foundation. Their annual contribution to Parkinson’s research has increased by 42% over the five years since 2014 (watch out for the slightly misleading scale on the graph). This increase in funding is consistent with the increase in the amount of research output that we saw earlier.

In summary, the amount of research into Parkinson’s is high compared to other neurological conditions and has been consistently growing over recent years, but it is still small compared to many other medical conditions.

Does it deserve more funding? Given the number of people affected, maybe. But in the majority of cases, people can still have a reasonable life for quite a few years with Parkinson’s and it’s a very different story for most types of cancer for example. Or Alzheimer’s for that matter.

What can we learn from other conditions?

AIDS/HIV is essentially resolved from a medical perspective though the antiretroviral drugs used to treat it remain too expensive for many. The total global spend between 2000 and 2015 on the disease was an astonishing $562 billion according to the Institute for Health Metrics and Evaluation (IHME) at the University of Washington. Yes, that’s half a trillion dollars. More than the annual GDP of Thailand with its population of 70 million.

Similarly, research spending on cancer, which has made great progress in the last couple of decades, runs into tens of billions of dollars per year.

The lesson is clear: finding cures for tricky medical conditions requires a lot of funding, way more than Parkinson’s or Alzheimer’s currently receive. We’ll get there in the end but at current levels of investment it will take time.

So, as I gaze very speculatively into my crystal ball, what I see is:

  1. An ageing population and more people being diagnosed with Parkinson’s every year
  2. Steadily increasing research funding from governments and private organisations, and a corresponding increase in research output, but at an absolute level lower than many other conditions
  3. Over the next 10 years, the approval of some drugs that slow progression of the disease for some people
  4. Over 10-20 years, an understanding of the underlying cause(s) of some variants, and perhaps treatments that can restore missing neurons, thereby reversing the disease
  5. Over 20-40 years, science starts winning the war, systematically understanding the different variations of Parkinson’s, developing reliable screening for risk factors, and finally finding a cure (or set of cures)

Where does that leave hope?

Given these assumptions, I don’t follow every research thread or get excited at every news headline. But it’s not really a case of hope fatigue. For myself I don’t expect to be cured (and would be pleasantly surprised if this did happen). But I have every hope – indeed expectation – that the next generation won’t have to suffer from the disease that James Parkinson first described 203 years ago.

Table of current trials

Drug under development or in clinical trials
Companies/ parties involved
Alpha synuclein immunotherapy
(attacking the build up of alpha synuclein using either the brain’s own antibodies or artificial ones)
Prasinezumab Roche, Prothena Biosciences
BIIB054 Biogen, SPARC
MEDI131 AstraZeneca
Lu AF82422 Lundbeck, Genmab
BAN0805/ABBV-0805 AbbVie, BioArctic Neuroscience
UB-312 United Neuroscience
NPT088 Proclara Biosciences
NPT520-34 NeuroPore Therapies
NPT200-11 UCB
ENT-01 Enterin
YTX-7739 Yumanity
Mannitol Clinicrowd
Anle138b MODAG
LRRK2 inhibitors (for people with a PD-inducing mutation in the LRRK2 gene) DNL-201 Denali Therapeutics
BIIB094 Biogen, Ionis Pharmaceuticals
PINK1 and PARKIN inhibitors TBA Mitokinin
TBA Vincere
iCP-Parkin Cellivery
GBA therapies Ambroxol Cure Parkinson’s Trust, Van Andel Institute
Venglustat Sanofi Genzyme
LTI-291 Lysosomal Therapeutics
TBA Prevail Therapeutics
ESB1609 E-scape Bio
S-181 Surmount Bio
c-Abi and TORC1 inhibitors (boosting the body’s natural autophagy mechanism) Nilotinib Georgetown University
FB-101 1ST Biotherapeutics, Neuraly
Radotinib Il-Yang Pharmaceutical
IkT-148009 Inhibikase Therapeutic
RTB101 resTORbio
NLRP3 inhibitors and other anti-inflammatories Inzomelid Inflazome
NT-0167 NodThera
Azathioprine Cambridge University
XPro1595 INmune Bio
Sargramostim Parkinson’s Nebraska
GLP-1R agonists (protecting further neurons from dying) Exenatide
Semaglutide Novo Nordisk
NLY01 Neuraly
PT320 Peptron
Neurotrophic factors (growth hormones for neurons) GDNF Cure Parkinson’s Trust, Brain Neurotherapy Bio, Genecode
CDNF Herantis
Mitochondria boosters UDCA University of Minnesota
CNM-Au8 Clene Nonomedicine
EPI-589 BioElectron
CuATSM Collaborative Medicinal Development
Nicotinamide Riboside
AMX0035 Amylyx
Statins (for neuroprotection) Lovastatin
Simvastatin PD-STAT
Iron reduction Defeiprone Apopharm
PBT434 Alterity Therapeutics
Plasma infusion GRF6021 Alkahest
Other neuroprotection Lingzhi
KM-819 Kainos Medicine
DA-9085 Dong-A ST
ANAVEX2-73 Anavex
Cell transplantation N/A Transeuro
N/A International Stem Cell Corporation
N/A Center for iPS Cell Research and Application
N/A BlueRock Therapeutics
N/A Aspen Neuroscience

What do you give someone who has Parkinson's?

Saturday 18 January 2020

“Alexa, what’s the weather going to be like today?”

“Right now in London it’s 5 degrees Celsius with clear skies and sun. Today’s forecast is cloud with a chance of showers, with a high of 7 degrees and a low of 0 degrees.”

Her voice is mellifluous, already starting to put me a good mood for the day. I try another request.

“Alexa, what’s the population of Zambia?”

Her circular blue light whirrs round momentarily whilst she considers my question.

“According to the CIA World Fact Book, as of 2017 the population of Zambia is 16 million people.”

I change tack, trying to be a bit cool (though in reality I am well over a decade behind in my choice of music).

“Alexa. Play me something by the Fleet Foxes.”

“Shuffling songs by Fleet Foxes on Amazon Music,“ she responds then starts to play White Winter Hymnal.

I was following the…
I was following the…

“Alexa, finish.”

“Hm. I don’t know that.”

I was following the pack
All swallowed in their coats…

“Alexa, can you finish now please?”

“Sorry, I’m not sure.”

          And I turned ‘round and there you go
          And Michael you would fall…

“Alexa, I’ve had enough.”

Her blue light whirrs around again, starting to remind me of the red eye on evil Hal in 2001. She is listening to everything I say, perhaps even sending it back to some supercomputer in a remote corner of Nevada, profiling my behaviour to use against me in the future. Is she just pretending she doesn’t understand?

“You can send feedback through the App on your phone,” she says.

Finally, I figure out the magic word.

“Alexa, goodbye.”

“Talk to you later,” she replies and then switches herself off. Or at least I think she does. Maybe she is still silently processing the conversation in the kitchen.

The Amazon Echo was a Christmas present from my sister-in-law. Knowing that I have Parkinson’s, it was a well-intentioned gift, if a little misguided. Maybe in ten years’ time I might need to speak to a machine rather than use a keyboard or a remote control, but I’m not a cripple yet. Nevertheless, I very much appreciate my new toy and it could be useful for certain things. Though I note that Alexa doesn’t yet have access to the train departure board at the local station: that certainly would be helpful in the morning rush.

I got two other Christmas presents tenuously linked to my condition.

Firstly, a selection of whisky miniatures. Three varieties from The Balvenie no less. Clearly someone was reading my blog about single malts.

Secondly, the most useful gift of all: a long-handled shoehorn from Clara.

For years I’ve been struggling to put my work shoes on in the morning and this has only worsened with the Parkinson’s. So when Clara suggested that we only spend £20 on each other this year (saving our money for holidays later in the year), I didn’t hesitate in my request.

No more frustrated jamming of my sore fingers down the back of my shoes in the morning rush. No more shaking and cursing. No more tripping over. Now my shoes slip on effortlessly.

Clearly advanced technology has the power to be immensely beneficial to individuals and to society. The combination of complex data processing and computing power that sits behind Alexa’s soothing voice is a triumph of human achievement.

But sometimes it’s the simple things that make all the difference.

Writer's block

Sunday 5 January 2020

It has famously afflicted authors from Proust to J K Rowling and composers from Adele to Rachmaninov. Writer’s block. The temporary seizing up of the mysterious creative process whereby ideas translate themselves into text or musical scores on paper.

After 3 years, 125 posts and getting on for 100,000 words, I find myself staring at the screen not knowing what to write. I suppose I could say something about the year just passed, or spin some yarn about Christmas presents or the darkness of the winter solstice. But the truth is that I’ve hit a block. Out of inspiration, brain not playing ball.

However, I’m quietly confident that this will be a short hiatus and that normal service will soon be resumed. After all, J K Rowling got stuck on Harry Potter book number five but still went on to write two more blockbuster volumes after that.

In the meantime, I wish all my subscribers, and anyone who happens to stumble across this blog, every happiness and good health in 2020…

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