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.

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* 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.