Another year closer to the end

Monday 31 December 2018

I like things with a beginning and an end.

For example, I like projects. They have an objective, a start (where the planning is done to meet the objective), a middle (where the work is done) and an end (when the objective has been met and you can see the results).

My work is mostly project based, which I far prefer to when I was in a line management role at a previous company. With projects you get to have a certain amount of control and you have a target completion date. There are good projects and bad projects, but at least with the bad ones they eventually come to an end, and then you can move onto the next project.

However, much of life is not like a project; it’s continuous. Housework is a good example.

At home, I willingly do my share of shopping, cooking, cleaning, laundry and ironing. But I find these to be frustratingly pointless. Take ironing. No matter how much you do and how diligently you do it, clothes will be creased again next week and there will be another batch to do.

I bought myself one of those robot vacuum cleaners that creeps around, seemingly randomly, with a slightly menacing demeanour. Clara says it’s my pet. It does make life a little easier, but it doesn’t take away the mundanity and transitoriness of the weekly clean. There will be more dust next week. More crumbs on the kitchen floor. More bits of leaves brought in via the front door – or the cat flap. No beginning and no end. There will be dirt forever. To clean, or iron, or cook is merely to tread water.

As I look back on 2018, I ponder: have I just drifted through another year on the relentless treadmill of existence, or have I made tangible progress towards some sort of goal? Am I a better person, am I happier, have I given something back, or achieved something compared to this time last year? 

For many people, simply ticking along and enjoying time with loved ones and the community is reward enough. But I have a feeling that I need to be working towards something more than just daily living.

We’re in philosophical territory here, skirting around the big question of what it’s all for. I will return to the meaning of life in a future post, or two, but for now I will make the following observation.

I’m now a year closer to the end compared to 12 months ago. But, I have a reasonable idea when the end might be. And, given that I like to be able to plan ahead, I consider that a good thing.

For most of us, we have no idea when the end might come. Accidents and unexpected significant illnesses aside, a person my age these days could reasonably expect to reach anything from 75 to 105.

In my case, I have three data points that all lead me to a similar conclusion: 

1. Scientific research (see paper here)
2. The opinion of my first neurologist, Dr T
3. My own family history (see previous post A family affair part 4).

The upshot is that I can expect to live to around 67 with a Standard Deviation of 5 years – which, when you do the math, means I have about a 5% chance of making it to 75.

In practice, advances in medical science probably make my chances of getting to 75 somewhat higher. There is always the possbility of a cure in my lifetme. But for now, 70-75 is what I'm planning for.

Although the premature conclusion to my life means less time with loved ones, this does at least allow me to plan my future and gives me the opportunity to maximise what I do with my remaining time. Rather than merely existing for an unknown number of years, I have the chance, within the constraints of the progression of my disease, to actively manage what I get out of it and the contribution I can make.

So, what did I achieve this year? One thing was to be a year closer to retirement. I have a financial planning spreadsheet shows that it should be possible for me to retire aged 53 or 54, in spite of the pounding global equity markets took recently. Three or four more years of work, 10-15 reasonable years, then a few tough years at the end suddenly doesn’t seem so bad.

It's also been another busy and rewarding year. Trips to Seville, Barbados, Canada, Madrid and, currently, Budapest, where we are shortly going to be seeing in the New Year. Clara supportive as ever. Rosa growing into a confident but level-headed teenager. We had quite a bit of work done on the house and I feel that my home, with its shiny new bathroom and handsome wooden floors, is now a project that’s complete. I also had a decent year at work and hopefully am unlikely to lose my job in the near term, regardless of whether there is a Brexit-induced downturn in the next few months.

And, whilst I continue to have good weeks and bad weeks, and to deal with the heavy fatigue, overall the Parkinson’s has progressed slowly this year. No change in my medication for 18 months. In fact, several people have told me I look better than a year ago. I suppose I feel better too. Could the daily glass of single malt actually be working?

So, it’s another year closer to the end for me. But for the first time in a while, I feel like I have one hand on the steering wheel rather than sitting in the passenger seat watching the journey go by.

Paradoxically, despite the ups and downs of my condition, I really do feel very happy with my lot. Though I am acutely aware that, for now at least, I am one of the lucky ones: there are many Parkies far worse off than me.

Anyway, that’s enough navel-gazing.

It’s New Year’s Eve and outside is a beautiful crisp sunny winter's day in Budapest. Time for a fun start to 2019….

Happy New Year!

Parkies

Wednesday 21 November 2018

We call ourselves Parkies or PWPs (People with Parkinson's).

And we pop up everywhere.

Since I first went to a coffee morning for local Parkies not long after my diagnosis, I have been gradually getting to know other people with Parkinson’s. I now know several within walking distance of my home in South East London, some of whom I would call friends.

I’ve so far organised three lunches for the locals and there is starting to be a regular crowd.

We are a mixture of ages, from forties to sixties, with some of us still working and others retired. I am the most recently diagnosed and, at the other end of the scale, some have been living with their condition for a decade or more.

There is also an assortment of wives and husbands, evidently very understanding and supportive: despite our disease most of us are very lucky to have other halves who appreciate what we are going through and are there for us when we need support.

I could describe everyone’s background. For example, one person designs film sets and another is a retired accountant. But professions aren’t important; what binds us is our shared experience of living with Parkinson’s. And that is an ineluctable leveller.

To illustrate what I mean, take Gerald, the newest member of our lunch club. I had met him briefly at another Parkinson’s event a few months ago and had discovered he lives close by, so I invited him and his wife along to a lunch last weekend.

If I’m honest, Gerald was hard work. Softly spoken and somewhat distant (because of the you-know-what) I struggled to make conversation with him. I persevered for a while, learning that, now in his early seventies, he had been diagnosed about six years ago. I also found out that he goes to a local choir and various exercise classes; none of which I do because they are all mid-week when I’m at work. But eventually I gave up straining to hear him and turned to others at the table. I caught up with the usual crowd on Deep Brain Stimulation, stories about children, the merits of local restaurants and so on.

Towards the end of the lunch I overheard Gerald mentioning his alma mater. It turned out we went to the same small college (a hundred students in each year – what were the chances?) and from there he suddenly opened up and we had an extraordinary discussion.

Gerald was something of scientist and held court giving his views on everything from Stephen Hawking to the discovery of the Higgs Boson, and Artificial Intelligence, in which he had a PhD. He was formerly an MP in a Commonwealth country. And he was about to publish a book on corruption in politics.

Despite our age difference it seemed like we had a lot in common and I gave him a warm handshake as we left the restaurant. I figured he would be an interesting person to get to know a little better.

Then, the most remarkable fact of all I discovered when I looked him up on the Internet after returning home. He had a long entry on Wikipedia.

Only 4 years ago, whilst already suffering from Parkinson’s, not only was he an MP, he had been Prime Minister of a country of nearly 20 million people, and his wife the “first lady”.

But here’s the thing: none of that matters.

Regardless of who we once were, now we live our lives in the shadow of a disease that is causing our brains to slowly degenerate. We are all on our individual journeys, and we all have to come to terms with the condition in our own ways.

What matters is not what we did or didn’t do in the past but how we deal with the present and the future. What matters is how we conduct our daily lives and interact with those closest to us. What matters is, despite our shared misfortune, are we still decent, civilised people?

So the erstwhile Prime Minister is most welcome to our little lunch club, but no more or less so than the doctor, the IT professional and the stay at home mum.

We are all Parkies now.

Sex and Parkinson's

Friday 2 November 2018

I thought that title would get your attention. It will be interesting to see how many hits this particular blog post gets over the coming months.

But I am being a bit disingenuous. What I really want to talk about is the role of gender in Parkinson’s.

It turns out that Parkinson’s is slightly different between men and women. There are three main differences:

1. More men than women have Parkinson’s, by a ratio of about 2:1
2. Women on average have later onset: the average age at diagnosis is about 62 for women and 60 for men
3. The initial symptoms are different. Women are more likely to have tremor as one of their first symptoms whereas men are more likely to get rigidity of movement.

My own family experience echoes these general features. My mother was considerably older than me at diagnosis: 69 compared to my 47. She had early tremor in comparison to my stiffness and bradykinesia (slow movement). And fortunately, my sister, who is two years younger than me, is not yet showing any signs of disease; long may that continue.

Why are there these differences between men and women?

The short answer is nobody knows, but it is thought that the female hormone oestrogen plays a role.

A few studies have indicated neuroprotective effects of oestrogen on nigrostriatal dopaminergic cells (the ones that are dying in my brain).  The oestrogen hypothesis is further backed up by the fact that the number of children, age at menopause, and duration of fertile life are all correlated with later age at onset in women. My mother had six children, so perhaps this goes some way to explaining why her onset was so much later than mine.

Other studies have proved inconclusive however, and if oestrogen is neuroprotective, the exact mechanism for this is unknown.

Could oestrogen, or something similar be used to treat Parkinson’s?

Well, probably not. It seems that although onset of Parkinson’s is a little different between the sexes, once a person has confirmed Parkinson’s, the progression is much the same. In other words, by the time you’re diagnosed it’s too late. Perhaps 90% of the dopaminergic cells are already gone so a treatment that slightly slows down depletion of the remaining cells would only have a small effect.

This is borne out by my own observations. For example, I went to a coffee morning with my local Parkinson’s group last weekend: there were five men and three women (so roughly 2:1) but there was just as much variation in the range and severity of symptoms across the two genders.

There is clearly something significant in the difference between men and women. If you were known to be at risk of Parkinson’s due to a genetic factor then a treatment that could significantly delay onset might be well worth taking. Though it’s not a simple case of men swallowing oestrogen tablets to protect themselves. For one thing, that has side effects of shrinking testes and growing breasts…

Nevertheless, it seems to me that the gender question could be a fruitful line of research, but there have been relatively few studies on the topic.

As for the impact of Parkinson’s on one’s sex life (which, go on, admit it, is the real reason you clicked on this post), well… some things are best left private. But I’m sure if you go back to Google or Bing, you will find plenty of other references to that particular topic…

Ebb and flow

Saturday 13 October 2018

Clara, an erudite linguist not shy of picking me up on the odd grammatical error, surprised me the other day when she asked me what was ebb and what was flow.

“Ebb is when the tide goes out and flow is when it comes back in again,” I told her.

“Thanks. I wasn’t sure which way round they were,” she explained.

Later, I looked it up, just to be sure. Wikipedia explains it better than I can:

Ebb and flow are two phases of the tide or any similar movement of water. The ebb is the outgoing phase, when the tide drains away from the shore; and the flow is the incoming phase when water rises again. The terms are also common in figurative use.

The reason this came up was that we had been discussing the ebb and flow of my Parkinson’s. Just when I thought I had tamed my disease – finally in control, I had been musing – I had a bad week.

Work was a real struggle from first thing Monday morning, but particularly difficult on Tuesday. When leading a workshop with a client, I was presenting various materials on a big screen from my laptop: three hours of constant fumbling with mouse and the keyboard ensued. I fumbled my words too, and strained to make eye contact as my vision turned to a blur. And my audience had difficulty hearing my soft voice to boot.  

At lunchtime, soup was not the best choice as my tremoring hand struggled to keep liquid in spoon. I proceeded to eat my main course like a child learning basic use of cutlery. In the afternoon, I battled to stay awake until home time, wishing people would stop talking to me and just go away.

Perhaps I am now under-medicated. After all, I’ve been on the same dose of pramipexole for well over a year. But this is the reality of living with Parkinson’s. There are good weeks and bad weeks. On days and off days. Inexplicably, it ebbs and flows.

In line with my new 4½ day working week, I took Wednesday morning off. I also slept in on Friday and dialled into various meetings whilst still in my dressing gown at home.

By Friday evening I was more or less done for, but I had arranged to meet an old friend over dinner in central London, someone I hadn’t seen since before my diagnosis, and I wanted to keep my appointment.

Over bread and starters in the noisy French restaurant, Aaron and I engaged in small talk about family, work and the good old days.

After my côte de veau had been served, there was a suitable pause in conversation, and I told him about my Parkinson’s.

His response surprised me.

“Yes, I know all about Parkinson’s. My dad had it for 20 years. He was diagnosed when he was 53 but sadly he died a couple of years ago. But not of the Parkinson’s. He died of cancer. A brain tumour.”

No more small talk: onto the important stuff. 

It was interesting and helpful to hear from someone who had first-hand experience of a close relative with the disease. Although there were difficult times, and an unwillingness on his father’s part to talk much about it, there were positives too.

“One of the things he did was to retire early. He and my mum did a lot of travelling together. They probably did a lot more than they would have done had he not been diagnosed. South America, Africa, you name it. They had a great time, right up until the last year. And even then, it was the cancer that stopped him, not the Parkinson's.”

In spite of Aaron’s dad’s unfortunate end, I found the conversation very inspiring. I hope to learn more from his experience.

On the way home, I reflected on the discussion with my old friend. There will be plenty more bad weeks like this week. But there will be plenty of good weeks too, and there is a lot of living to be done in the good weeks. 

In short, as well as ebb there will be flow. And when the tide rises, so I need to rise with it.

A glass of whisky a day keeps the neurologist away

Thursday 27 September 2018

A glass of whisky a day keeps the neurologist away.

Or does it?

Six months ago I embarked on an experiment to see if drinking a glass of single malt Scotch whisky every day would have an effect on my symptoms. You may recall (see previous post here) my hypothesis that possible neuroprotective effects of ellagic acid, or some other chemical in the drink, helped my grandfather live to 93 without ever showing any signs of the disease. This in spite of him likely being a carrier of a faulty gene passed down through at least four generations of my family.

I should say up front that my experiment has been highly unscientific. Here are its main flaws:

1. There is no control. There is no other me not taking the medicine to compare against.

2. There is no placebo. There is no other me drinking an ineffective whisky taste-a-like to eliminate the possibility that the effect is simply psychological.

3. I have not standardised the amount or time of day that I take my medicine. Sometimes I have a glass of whisky in the evening; sometimes I have half a glass after lunch and before my afternoon snooze. I even sometimes have a sip in the  middle of the night to help me get back to sleep. (Am I turning into an alcoholic? Not really, as some days I have nothing at all.. though I do typically drink six days per week.)

4. I do not take the same medicine every day. I’ve sampled the delights of 16 different distilleries so far.

5. There is no objective measure of the results. Actually this is a general problem with any clinical trial of drugs for Parkinson’s.

Nevertheless, it’s interesting to reflect on whether this is complete fantasy or whether - just maybe - there is some merit in my crazy fad.

So here is my analysis after half a year.

First question: does it have to be single malt rather than blended whisky?

Well the thesis is that the reactions with the wood in the cask over a period of ten years or longer lead to rich concentrations of ellagic acid (or whatever other substance may be having an effect). And there is some proper science to support this. So, yes, aged single malt over young blended.

Secondly, which brand?

Again there is some science behind this. The Balvenie whiskies have the highest concentrations, but other Speyside distilleries produce similarly rich potions. But for me it comes down to the taste. 

Though not yet a connoisseur, I am starting develop my own views of what I like and don’t like and some of the differences between the regions. Before starting my experiment I had a slight preference for the smoky flavour of the island malts, caused by the peat in the water. But now I prefer the richer, sweeter and more refined taste of the Speyside malts, of which there are many. I’m less keen on the rougher highland malts and I have no experience - yet - of the lowland malts.

Here are my ratings out of ten based on taste but also taking value for money into consideration. So for example Aberlour is not the finest taste but, in my opinion, is good for the price. The other numbers refer to the age in years.

Speyside

• Aberlour 10:  6/10
• Aberlour 12:  7/10
• The Balvenie double wood 10:  7/10
• The Balvenie triple cask 12:  6/10
• Glen Moray:  6/10
• Glenfiddich 12:  5/10
• The Glenlivet 12:  5/10
• Singleton of Dufftown 10:  6/10
• Tamdhu 10:  5/10

Highland

• Glenmorangie 10: 2/10
• Glengoyne 14: 4/10
• Oban 14: 3/10

Island

• Bowmore 10: 7/10
• Laphroaig 10:  5/10
• Talisker 10: 7/10

Blended

• Monkey Shoulder: 2/10
• Some cheap Japanese crap I bought at Heathrow airport - 0/10

Thirdly and most importantly: does it work?

Given all of the above caveats, it’s difficult to draw any meaningful conclusions. In the last six months my condition has ebbed and flowed a little and there have been one or two new symptoms.

And yet... as I sit typing this in a hotel room in Copenhagen (see previous post here - yes, I won the work) I don’t feel too bad at all - symptoms largely under control and the fatigue, whilst still a challenge, is something I’m managing better these days.

So maybe it does have a positive effect, at least on my version of Parkinson’s. I can say with reasonable confidence that it hasn’t made things any worse.

Even if it hasn’t had any genuine medical effect, it’s been fun. I have a new hobby, I look forward to my glass of the hard stuff every day, and I get to show off my growing collection of single malts when friends come round for dinner. Seems like a good idea to continue the experiment for another six months. At least.

Now then, I’m in a hotel room and, having travelled with hand luggage only, I have none of my liquid gold medicine with me. Luckily there’s a minibar, but it only has a miniature bottle of Jack Daniels. 

In my desperation, I crack it open. It actually tastes okay - relatively light with a pleasant, lingering aftertaste.

Another one to add to my list?

Unfortunately not. I’m now a Scotch single malt snob. For medical reasons you understand.

Flexible working revisited

Saturday 15 September 2018

I’ve discovered the secret of keeping my Parkinson’s under control…

It’s to be on holiday all the time and not work.

In all seriousness, when I take a holiday of a week or more, the main problem, which is the constant fatigue, starts to abate. With this, the various other symptoms like my softening voice or tremor, start to ease as well.

In short, working makes everything worse.

  

Unfortunately, I still have a few more years to go on the mortgage and, even with my reduced life expectancy, the pension pot still looks too small, but I do earn enough to consider working part time.

At the start of the year I tried a 90% (4.5 day) working week for a trial three-month period. Unfortunately, the trial didn’t really work.  I was effectively still working full time anyway, spending my weekends catching up for what I didn’t do on Friday afternoons, but not getting paid for it. So, six months ago I reverted back to full time.

Since then my Parkinson’s has progressed a little further and I simply can’t cope with working full time any longer. From next month onwards, I have agreed with my employer to again revert to a 90% working week. But this time there’s no going back and I see this as a transition to an 80% (four day) working week starting in the new year. 

Second time around, I need to make the arrangement work. Because I work for a Professional Services firm, I’m not paid by the hour so it’s not a simple case of reducing the time I show up in the office. Rather, I’ve discussed with my boss adjusting my overall responsibilities to take on fewer clients and have a proportionally lower sales target.

It will take discipline to do this. I will have to say no more often, delegate ruthlessly, and perhaps hardest of all, see my peers (and in due course people who are today my subordinates) progress ahead of me. Maybe I can still rise further to the top echelons of my firm, but it seems unlikely.

When riding on the Parkinson’s bus you only get a one-way ticket. In a work context, it would be a miracle if I could do anything other than follow suit. 

But I see this in a positive light as well: working less will hopefully give me more opportunity to exercise, spend time with my family and bring some enjoyment back to daily life – something that has been lacking for the past couple of years as I undergo a desperate struggle each week to make it through to Friday evening.

It’s time to start taking control.

Hiking in the Rockies

Wednesday 29 August 2018

My first proper experience of the wholesome delights of rock, grass and earth under boot was in the Yorkshire Dales when I went on a school hiking trip for a week, aged 15. 

I was fit and strong in my youth. On the longest day of the trip I was able to carry a full pack for 19 miles. And not just any 19 miles. That day we took in two of the famous Three Peaks, Pen-y-ghent and Ingleborough, and it was pretty muddy under foot too as I recall.

Since that first taster of the great outdoors, I have been fortunate enough to immerse myself in some of the classic walks that Britain has to offer: from the dramatic vista on the precarious Striding Edge leading up to Helvellyn in the Lake District, to the sight of wild ponies grazing by the side of the Pembrokeshire coastal path, to the ancient and gentle sweeping curves of the Scottish interior. 

I enjoy the physical challenge, but most of all I revel in the view from the top of mountain or Munro, the reward for all the hard work.  Slightly annoying then, that I’ve been to the top of Snowdon six times and it’s been cloudy at the summit every time. But then again, disappointments make the victories even sweeter to savour.

Hiking can be an enjoyable solo pursuit, in which case one gets close to nature and to one’s own essence. But it is also a great way to bring people together. A long walk is an opportunity to share memories and ideas, to build a bond through a common experience. Or simply to enjoy being with a friend or loved one. And it’s healthy too.  

I’ve also hiked in a number of places around the world. One of my favourite areas to enjoy pitting foot against land is the Canadian Rockies. 

I have some good friends who emigrated here a about a decade ago and I have been to visit them several times. They are living their dream in a beautiful house surrounded by pine clad mountains and big skies, acres of land for their two boys to enjoy, but within walking distance of the local resort town with all its Canadian amenities and friendly smiles.

I am here again, this time with Clara, currently in scenic Banff for a few days before driving through more epic scenery to see my friends.

Now that I have Parkinson’s, I can still enjoy a hike, but my right leg and foot are uncomfortable after a couple of hours, and I struggle with my overall level of fitness, so short walks are the order of the day. Similarly, I can no longer drive safely for much more than an hour at a time, so long road trips are out of the question, and in this part of the world I have to plan ahead and break up the time behind the wheel into manageable chunks. 

I hope to return to the Canadian Rockies again but it is difficult to predict how things may progress and I may not be able to. So I endeavour to enjoy my time here - not by trying to rush around and do everything, but by doing a few things slowly and absorbing nature’s spectacle along the way. 

Clara and I go for a walk through evergreen woods with occasional glimpses of huge and dramatic limestone buttresses, and the higher peaks dusted with fresh white powder from the overnight snowfall.

As I feel the crunch of pine needles and twigs through my hiking boots, I reminisce about that childhood experience in the Yorkshire Dales. Thousands of miles and a generation away. A different hike on altogether different terrain. But still the same feelings of effort and reward. And of respect and admiration for the natural world.

Clinical study

Friday 24 August 2018

Yesterday I participated in another clinical study.

Like the other studies I have contributed to, it was aimed at better understanding the identification and causes of Parkinson’s, as opposed to a clinical trial for a new drug.  

There have been many drug trials over recent decades but few of them have been successful. One of the most recent medicines to be licensed for use in treating Parkinson’s was the one that I use, pramipexole, which was studied in 1992 and approved by the European Medicines Agency and the US Federal Drug Administration in 1997. But pramipexole is similar to other dopamine agonists, and this class of drug was introduced in the 1950s, along with the two main other treatments for Parkinson’s, levodopa and monoamine oxidase inhibitors (or MAOIs, not to be confused with moais, which are the enigmatic statues on Easter Island). So, the drugs used to treat Parkinson’s today are essentially the same as 60 years ago*.

However, none of the treatments available tackle the cause of Parkinson’s. As I have mentioned a few times previously, this is simply because the true cause is unknown. So there are many studies now trying to fill that knowledge gap. Central to this is the thesis that Parkinson’s probably comes in several varieties (see previous post The science behind neurodegeneration) and hence has several causes. It is quite possible that, had some of the recent drug trials been targeted at people only with a particular variety of Parkinson’s, then some of them would have worked.

The study I participated in was a curious mixture of cutting edge science, subjective clinical observation, and copious old-fashioned form filling.  
  
I was surprised to see no less than a dozen vials waiting to be filled with my blood, but the extraction of the life sustaining liquid from my vein was simple enough and gave me quite a bit of time to chat to the doctor about his research into mitochondrial dysfunction, and my whisky theory.

There were endless tests on my movement, some of them videoed for quality control, and endless questions about my symptoms, medication, mood and so on.

There was also a drawing test and a cognitive test.

The cognitive test was simple enough: 

• Name these animals (I was shown pictures of a lion, a rhinoceros and a camel – or was it a dromedary…?)
• Name as many words beginning with the letter F as possible in a minute
• Memorise this list of words: red, church, velvet, daisy, face
• Listen to this list of numbers then repeat them: 2, 1, 8, 5, 4
• Repeat this sentence: “the cat always hid under the couch when dogs were in the room”
• Say the months of the year backwards
• Where are you and what is the date today?
• Close your eyes and, starting at 100, continue subtracting 7   

The last one caught me by surprise. I rattled off 100 and 93 then paused for what seemed like an eternity but was probably only a second or two. Is it 84 or 86? I was momentarily flustered, then regained my composure and continued: 86, 79, 72, 65 at which point I was told to stop.

Not a big deal you might think. But I have two A grade A-levels in Maths and Further Maths.  Mathematics was, and still is, my favourite subject. I even still read maths books from time to time. And as for mental arithmetic, when I was aged 8 I would have no problem reeling off subtractions of 7, and I could probably have translated it into French at the same time: quatre-vingt-treize, quatre-vingt-six, soixante-dix-neuf, …

I can’t deny that I have had some mild cognitive decline since first experiencing Parkinson’s symptoms. I notice it sometimes at work and when chatting to Clara in the evenings. Short attention span, can't find the right words, difficult to follow a complex discussion. Maybe natural ageing, maybe fatigue. Or perhaps something more insidious.

I didn’t dwell on it, and I left the study in a positive mood. As always, I was happy to have made another small contribution to moving the world forward.  

There are 10 million people across the globe waiting for a breakthrough. After two generations since the last major breakthrough this will eventually happen, but it will require the collective efforts of neurologists, neuroscientists, research assistants – and willing study volunteers.

---

* These Parkinson’s drugs all treat the effect of Parkinson’s, which is a lack of dopamine (that in turn leads to a myriad of motor and non-motor symptoms). In crude terms:

• Levodopa helps the brain to generate more dopamine with its existing neurons
• MAOIs slow down the natural breakdown of dopamine so that what dopamine there is goes further
• Dopamine agonists are a kind of artificial dopamine

These medicines can also be used in combination. But none of them slows down progression of the disease.

Famous for five minutes

Saturday 4 August 2018

Off the back of the diversity panel event I participated in a few weeks back, I was asked if I would mind contributing a short article showcasing my story. My company was keen to promote flexible working as part of a recruitment drive. Glossing over the fact that my recent reduced hours arrangement hadn’t actually been particularly successful, I was happy to help.

I was asked to approve a brief piece of text:

Steph has early-onset Parkinson’s disease and works from home one day a week in addition to a temporary reduced hours arrangement. Though medication helps control the symptoms, it can be tiring. Initially, he found stepping out of social gatherings a bit awkward, but his team really supported him. Avoiding an hour-long commute and having extra time to rest midweek has also had a surprising effect on his energy levels throughout the rest of the week. He has a demanding job, but with careful management and a little flexibility, he can work effectively despite his health condition. 

“When in doubt, speak to your manager and, if appropriate, your HR team about your situation – you’ll be surprised how accommodating businesses can be!”

I thought nothing more of it for a couple of weeks.

And then one morning I checked my emails on the way to work. The first one was from a colleague in Amsterdam.

“Just came across the LinkedIn update in which you were featured. Wanted to say I never knew and am very impressed by your openness – a great example and role model. Wishing you all the best!”

And there were several others. I quickly looked at my firm’s LinkedIn page. 

There I was, pictured on Broadstairs beach in my sunglasses with my story, 30 comments and just shy of 1,000 likes.

The comments were from random people from all over the world:

Proud to work for a company that walks the walk!

Really brilliant to see companies supporting employees just when they need it most. as it should be.

100% true, living proof here! This firm really cares about people, both employees and clients, the entire firm lives by its values.

Nice to see great companies supporting their people, keep it up!

I’m so proud of what a Firm I’ve just joined is capable of. My father had Parkinson so I can definitely relate to this.

I wish you all the best, you are lucky to have such understanding support from your firm, keep up the good work.

And so on.

There was only one slightly misguided comment, from a young woman in Dubai:

He's lucky, but everyone is not

I’m not sure that having an incurable neurodegenerative disease counts as lucky but I think I see what she means.

Of course, it would have been nice to have been forewarned that my innocuous article was actually going to be published on my firm’s global LinkedIn feed, but it was now too late to question … my condition had overnight become very public with all my work colleagues, clients, and several million other people.

Although I was initially taken aback, the cat was now well and truly out of the bag so there was no point in doing anything other than embrace the moment. I chatted to a few people about it in the office and in a small way did something to raise awareness about people living with Parkinson’s.

After 24 hours the number of likes reached about 1,300 and there were a few more comments, but activity pretty much stopped after that. Such is the nature of our digital world that a story more than a few minutes old is already yesterday’s news.

So, I was famous for five minutes, but hopefully in a good way.

Another six months

Friday 27 July 2018

This week marked nearly six months since my last visit to see The Professor, and it was tIme for my biannual check-up.

Although I didn’t have much to report, I was looking forward to seeing him again. Maybe I could spend a few minutes discussing his research and some of my own ideas about the underlying causes of Parkinson’s. And maybe I could get to know him a little better.

I sat patiently, catching up on work emails for the customary half hour or so delay.

“Hi there,” I said when he appeared. But he called for an elderly woman in the waiting room instead, and more or less ignored me.

Shortly afterwards a young doctor approached me and explained that he was one of The Professor’s clinical team and that he would be seeing me today.

I confess: I was disappointed. 

I had been downgraded. No longer an interesting case. Just another one of thousands of people in the UK on their inexorable journey of neurodegeneration. Nothing the doctor can do other than prescribe the same medication or tweak the dosage and tell his patient to come back again in six months.

To be honest, I would do the same: delegate the ordinary cases and focus on the unusual stuff.  

To his credit, Dr J realised he was second choice and made a real effort to be friendly and courteous, and to do his homework by carefully pre-reading my clinical notes.

He went through the motions of the various physical tests, and, as expected, quickly declared that there was no need to change my medication. Although I had deteriorated slightly since the last visit, I was still in relatively good shape; able to walk properly and, for the most part, use my hands reasonably well. We discussed my ongoing sleep and fatigue difficulties, but unfortunately they are par for the course. 

There was no news on my genetic test results, but Dr J was confident that they would be ready by my next appointment - in six months’ time.

But the visit wasn’t valueless. I was invited to take part in a new clinical study, one specifically focussed on identifying and analysing mitochondrial dysfunction as a more specific form of Parkinson’s (do they know something from my genetic testing that they can’t yet tell me I wonder?).  

As always, I was happy to help. I’ve booked myself in for the blood test, but will need to think a bit more before committing to the optional skin biopsy and lumbar puncture...  

As with the other studies in which I have participated, I won’t get to see any results. I don’t mind this but I do get a little frustrated at the overall pace of research. Medical science has achieved many wonderful things but can be frustratingly slow as hypotheses are tested and discarded, and as methodical trials and processes are followed.

I look forward to next seeing Dr J at the start of 2019. I am grateful that the slow progression of my disease means that I am still able to do most of the things I want to do. 

But I’m not holding my breath for a breakthrough.