Time for a change

Saturday 20 August 2023

Nothing lasts forever, least of all this blog. After nearly 7 years, 200 posts and 60,000 views, I've decided that this will be the last entry.

It's not that there isn't more to write about. I could talk about some of the research I've recently started to get involved in, the slow but inexorable decline in my faculties, some new Parky friends I've made recently, or miscellaneous things like the Parky that went into space last week.

It's just that it feels like time to move on. Most of these topics can be the subject of YouTube videos for LivedHealth Parkinson's that I do a lot of work for. And as for my personal story of living with young onset Parkinson's, that is now in a long middle phase where, yes, stuff happens, but progression is slow and frankly it gets a bit boring after a while. I'll keep the blog open for another year or two with some of the better posts still live, and then let it slip quietly into the archives.

I want to close by saying how much I've enjoyed writing these musings, and how grateful I am to you for reading them. If I've helped a few people along the way then that's fantastic; if I haven't then at least I got a lot personally out of writing this stuff.

Take care whoever you are and wherever you are, stay positive and remember: you can't change the hand you've been dealt, but you can make the best of the cards that you hold.

World Parkinson Congress, Barcelona 4-7 July 2023

 Friday 7 July 2023

Four years ago, I wrote about how attending the World Parkinson Congress in Kyoto, Japan, changed my life.

This week I was in Barcelona at the sixth instalment of this event. Of course it was never going to be as significant for me personally as Kyoto, but it was an amazing week nevertheless. I am writing this on the way home, feeling both exhausted and energised at the same time.

Like Kyoto, the event was spread over four days. It had around 2,500 participants from over 70 countries: a mixture of medics and researchers of all levels from students to world leaders in their fields, and people personally affected by Parkinson’s either as a PWP or a care partner. There was the same fascinating mix of cutting edge, highly technical science, presentations and round table discussions aimed at people living with the condition, and all sorts of side attractions like companies showcasing innovative technologies, an art show, various award ceremonies, a book stand, a comedy show, a cinema room, exercise classes, and so on. I took quite a few videos, many of which will appear in the coming weeks on the YouTube channel on which I do a lot of hosting. Needless to say, I spoke to a lot of people and learned a lot this week.

I saw four themes coming out of the event. 

1.    Basic science: we are getting there – slowly

Have we made progress since the last congress four years ago? The short answer is yes, but slowly. From a scientific perspective the topics were pretty much the same: proteinopathies, genetics, lysosomal dysfunction, neuroinflammation etc., and there didn’t seem to be a big new idea. However, some ideas have developed further, like the brain first, body first theory that Parkinson’s can start either in the gut or the brain; this hypothesis seems to be gaining a lot of support. The impression I get is that the pieces of the jigsaw are mostly in front of us, but we still need to assemble them in the right way. There is undoubtedly progress, but it feels quite slow.

2.    Diet and nutrition are important

There have long been PWPs who swear by certain diets or food supplements, but the scientific community has largely ignored them as they are each one off cases.  There is a growing realisation that there is actually some substance to dietary factors, and there is starting to be more rigorous investigation of impact of what we eat. For instance, dairy is thought to bad for PWPs, possibly because it interferes with the uptake of levodopa. There is more to come on this topic and I’ll write a blog post on it sometime.

3.    There is lots of technology innovation

I’ve seen prototypes before of innovative technologies to help with certain problems in Parkinson’s, but these are now evolving into usable products. A example is a glove with a gyroscope attached that cancels out the tremor, enabling PWPs with sever tremor to write again. The device sounds – and looks – obscure but it does actually seem to work.

4.    We will probably have some new therapies in the next 2-3 years

We’ve heard this one many times but now I think it’s actually true. There are a number of promising drugs that may have a disease modifying effect in phase 3 clinical trials. I think one or two of these will come good. Importantly, there are also a range of other therapies making progress that promise symptomatic relief, including cell replacement (which I have written about previously) and focussed ultrasound.

From a personal perspective, I took away two additional things:

1. I know a lot of people in the Parkinson’s world.

I was surprised at how many people I already knew in the Parky world, a list which got added to as the week progressed. First and foremost some of my local Parky buddies that were there, plus Parkies I know from the South London Younger Parkinson’s network. Then it was great to finally meet my YouTube co-hosts face to face; they were full of intoxicating energy and enthusiasm. There were several academic groups and charities that I’m involved with where I got to meet both familiar and new faces: The Michael J. Fox Foundation, Critical Path for Parkinson’s, Accelerating Clinical Trials in Parkinson’s, Cure Parkinson’s and Parkinson’s UK. And I even got to chat to Rachel, my neurologist, though sadly The Professor wasn’t there. I plucked up the courage to ask a few questions in some of the large plenary sessions (with probably 500+ people in the room) so perhaps a few other people now know my name as well.

2. I can do useful research.

I presented a poster based on the results of my MSc project from last year at one of the two poster sessions. As the name implies, this involves making a large poster which you pin up on a board, that people then come and look at and ask questions about. My poster was deliberately provocatively titled: “Parkinson’s: one disease or several? The fallacy of subtypes.” There is a lot of talk about different subtypes of Parkinson’s in the academic community but my own research suggested that this is misleading. You can put PWPs into groups based on their symptoms, but wait ten years or more and those groups become indistinguishable. I was worried (a) that nobody would look at it or worse (b) that people would think it was rubbish. But then two leading professors, one from Canada and the other from the UK, agreed with me. So perhaps there is a future for me doing proper science after all…

Overall, I came away feeling very positive and re-energised, both about the future for Parkinson’s research and my own ability to make a meaningful contribution.

It will be interesting to see what the status is of both of these things at the next World Parkinson Congress in 2026, by which time I will have been living with Parkinson’s for a decade…

Life in slow motion

Saturday 27 May 2023

My mother and I shuffle slowly along the trails through the woods at the back of her house. Our time together is precious and yet I don’t mind that we spend it in this way. In fact, I can think of few places I’d rather be than arm in arm with my mother in the English countryside surrounded by the glorious full bloom of a sunny day in May.

The slow pace allows me to tune into nature and gives me time to appreciate the beauty around me: the vibrant green of the beech and silver birch trees in their explosive growth phase; buttercups, daisies and bluebells lining the path. Bursts of brilliant white cowslip everywhere. I listen to the soft festination of my mother’s feet against a backdrop of melodic birdsong. Dappled sunlight adds a constant change of view as we meander along the path hardened by the recent clement weather. The only downside is that I haven’t been able to smell any of it for over six years, though my mother can still enjoy the aroma of Spring: the difference in our olfaction is one of the many mysteries of how Parkinson’s affects everyone differently.

53 years ago, my mother became a devoted, selfless parent. She nurtured me through my baby years, my first words, my first steps, my primary school years, and my teens, before finally stepping back and watching from a distance as I set sail on my own voyage. Now that odyssey has come full circle and I find myself playing the parent. When I do my monthly visit, a 7-hour round trip from my home in South East London, I cook lunch for her, take her for a walk, and occasionally do a couple of small errands around the house. We spend a few hours playing Scrabble or doing the cryptic crossword in the local paper together, chat a little about our Parkinson's, and of course I give her a back massage.

She is desperately frail, her body contorted and atrophied. She sleeps much of the time and needs frequent rests. But her eyes still sparkle with humour and grace, and she is still just about able to get out for a short walk every day. 

All too soon, it is time to leave and I reluctantly head out to the taxi waiting for me at the end of the road. We embrace. She clutches my tightly. and tells me she will be lonely when I’m gone. I assure her I will be back soon and that one of my siblings will also be with her before long.

As I speed south on the train writing this blog post, I am filled with happiness at a day well spent. I already looking forward to coming back again next month. But there is also a tinge of poignancy. I don’t know when it will happen. It may still be several years away. I may not even realise it at the time. One time when I do this trip, it will be the for the last time. 

If at first you don't succeed

Tuesday 16 May 2023

“FUCK!” I shouted, loud enough for the neighbours several doors away to hear.

The IKEA wardrobe I had been struggling to assemble for the last hour collapsed and a heavy plank gave me a hefty whack on the head on its way down. My immediate concern was concussion. I was a bit dazed and concerned about my brain and any possible swelling that might result. That was until I noticed the blood dripping onto my T shirt and trousers. “Fuck,” I said again, this time much more quietly. I called to Clare for help.

She cleaned me up in the bathroom and made me a cup of tea. I sat in the kitchen recovering after the bleeding had stopped, I had a cut on my scalp but thankfully no signs of anything else other than a bruised ego. Clare suggested I enjoy the rest of my Sunday afternoon and look into getting a flat pack man to help. After all, I have Parkinson’s, and that is not particularly compatible with constructing heavy bedroom furniture.

That night, I lay awake for hours, partly because of the sore head, but also because I was playing through in my mind what had gone wrong (the space I was trying to build the wardrobe in was too small), how I could salvage the broken pieces, and how I could rebuild successfully.

After Clare left for work on Monday morning, what I should have done was ordered replacements for the broken parts then hired someone to build it for me. But I decided to have one last go myself.

My strategy involved rebuilding the frame, which was a sizeable 2.36 metres high and 1 metre wide, on the bed using quite a bit of duct tape, then nail on the back board, then execute a precarious pivot off the side of the bed onto the floor, whilst avoiding smashing windows or ceiling lights. I loaded up with levodopa in preparation and waited for the drugs to kick in.

The first two or three attempts resulted in more collapses and frustration. I decided to have “one last go”. Miraculously, this time the structure held firm long enough for me to secure the backboard into position. Now for the tricky pivot onto the floor… this wasn’t easy but remarkably it worked and I then shuffled the unit into position. I had a second, undamaged, frame to construct in the same way and, having done it once, this was pretty straightforward. More levodopa followed by a couple of hours of fitting shelves, doors and handles; and drilling holes in walls to secure the furniture in position. The end result looked great.

I reflected on the saga of the wardrobe: with Parkinson’s you can often still do a lot but you have to be smart about how you do it and be well prepared. Medication, adaptation, and perseverance will often pay off in the end. But trying to pretend that you don’t have Parkinson’s can end in disaster.

The Strange Case of Dr Jekyll and Mr Hyde

Friday 31 March 2023

Like in story of Dr Jekyll and Mr Hyde, I often feel like two completely different people in the same body: the normal me that goes about his daily business like everyone else and, and the me that's been possessed by the evil Parkinson's.

Normal Me is around most of the daytime. He struggles with a few things in the kitchen or when he’s packing his shopping away in the supermarket, but to look at him, you wouldn’t particularly notice anything was wrong. A little stooped in his posture maybe, a little slow and with the worst handwriting you’ve ever seen. But not enough to really notice and, at a quick glance, he looks much like any other ordinary person. Normal Me is like the good Dr Jekyll.

In the evenings, Normal Me suddenly, and unpredictably, changes into Parkinson’s Me – the evil Mr Hyde

Well, Parkinson’s Me isn’t necessarily evil, but he can be very tetchy and short tempered. The problem is that Normal Me is pumped up with levodopa all day and this enables him to function relatively normally, whereas Parkinson’s Me is minimally medicated. Parkinson’s Me is a creature of the night, often writhing in bed and fequently awake in the early hours.

Parkinson’s Me is at his worst first thing in the morning when most or all of his meds have worn off. He always wakes up stiff and in discomfort, sometimes in pain too. He has a desperate urge to pee, but finds it difficult to get out of bed. When he eventually manages to stand up, he can’t walk properly. Instead he takes a slow shuffle to the bathroom, sometimes stumbling on the way, and cursing. We’ll spare you the details of the difficulties that he has in the bathroom.

When he returns to the bedroom, Parkinson’s Me takes a couple of pills and tries to get back to sleep. The next person to emerge from the bedroom is the affable Normal Me, and so the cycle repeats.

In the story of Dr Jekyll and Mr Hyde, the protagonist eventually runs out of the serum that turns him back into Dr Jekyll and is doomed to be the evil Mr Hyde forever. So he commits suicide at the end of the story. Fortunately I’m not at that stage yet, but perhaps eventually the medicine will stop working, and I too will be doomed - to be Parkinson’s Me all the time…

The C word

Saturday 25 February 2023

The C word has only 4 letters but it’s a big word. A word that used to be used in open conversation but is now taboo. These days, if it is said at all, it is said in hushed tones with an air of embarrassment. It’s no longer acceptable to throw it into serious talk, let alone casual chatter. Dare I actually spell it out here?

Finding a ‘cure’ was once everyone’s objective. And not just a cure for Parkinson’s. As neuroscience evolved there was confident talk of curing Alzheimer’s and Motor Neurone Disease, and various other neurodegenerative conditions.

But now we speak of ‘therapies’ and, if we are feeling really bold, ‘disease modifying therapies’ which stop or slow down progression. The  consensus amongst other Parkies that I sit on various advisory committees with is along the lines of , “it would be nice if we could make the disease get worse a bit more slowly…”

The reality is that Parkinson’s (and Alzheimer’s and MND and others) have turned out to be way more complicated that anyone anticipated and, after decades of research, we still don’t actually understand what’s going on. My personal view is that we need to understand the underlying biochemical mechanisms if we are to be successful in turning the tide on these conditions.

I also believe we should never give up. Given enough effort, we will figure this out and prevail. We are too smart as a species not to. Sure, a ‘disease modifying therapy’, or two, would be a big step in the right direction, but the ultimate objective should remain the same: like smallpox, wipe it off the face of the planet. 

It may take a long time. It may not happen in my lifetime. But I firmly believe we should keep striving for the day when humanity can proudly announce: 

“We’ve found a cure for Parkinson’s. Now, what’s next?”

Making a difference

Saturday 11 February 2023

Two years ago I set in motion a radical career change. I applied to do a Masters degree in neuroscience, handed in my notice at the company I’d worked at for nearly a decade, and set about venturing into the world of medical research, hoping in some small way to make a difference.

To some extent my hand was forced as I simply couldn’t manage the workload of a fast-paced corporate job any longer. But I decided that rather than slide quietly into early retirement, I would try to put my remaining years - and brain cells - to some use. So, as I approach six months since completing my MSc, have I actually achieved anything?

The answer is mixed.

Firstly I’m super proud of the YouTube channel I’ve been helping develop. Working with a charity called LivedHealth, I’ve fronted around 30 videos, talking to a variety of people about their experiences with Parkinson’s and a number of experts about different medical aspects and areas of research. Initially I was sceptical about whether we would add anything useful to the content already available, but I think the short and succinct, professionally edited clips give a refreshing set of perspectives. At the time of writing, we have nearly 1,000 subscribers and almost 250,000 views so clearly others agree. I’ve had PWPs from places like Canada and Switzerland contact me for advice based on what they’ve seen on the channel.

The thing I’ve spent most of my time doing is working with various research initiatives and charities mostly as an advisor giving a patient perspective on the disease, but I’ve also done some more substantive IT/data science work. I’m fortunate to get paid for some of this though much of it I’m happy to do on a voluntary basis.

It’s been interesting moving into the non-profit sector. As expected, it has its fair share of bureaucracy and inefficiency, but there are also a lot of highly motivated people working hard and striving to make a difference. Many of these people have a personal connection to Parkinson’s; often they have a close relative with the condition. 

I’ve been particularly impressed by the Michael J. Fox Foundation. Everyone I’ve come across there is affable, highly professional and motivated, but also smart and objective. The ethos is one of spending the hard-earned donations (now around a remarkable $1.5 billion) judiciously, in the research that is most likely to result in genuine disease-modifying therapies. Their tag line is “Here. Until Parkinson’s isn’t“ which to me sums it up nicely. They run a pretty slick operation. I’m very proud to have had the privilege of working with them.

So far, all well and good, but the original intention was to actually do proper research, to apply my data science skills in the quest to better understand what's really going on Parkinson's, to be at the coalface. I made a decent enough start getting a distinction for my MSc project on using machine learning to identify subtypes of Parkinson's. But I failed to get any ongoing support for my research beyond the degree and I've made little further progress on it. To be honest I flip-flop over whether I should pursue research at all: I'm not formally part of a research group and only loosely affiliated to King's College London and the University of Plymouth, so I have little academic credibility. And, given my age and my condition, the younger academics are all sharper than me anyway. In short I wonder whether trying to do research is really the best way to spend my limited productive time and energy.

So, I'm making a difference, but it's only a small difference, and not quite the difference I anticipated. Nevertheless, it's better than the alternative of playing online Scrabble and watching Netflix all day...