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.

Popular posts