In this post, I will address a question that I get asked a lot: What would you do if you were diagnosed with Parkinson’s today?
Before we start, please understand that there is no secret magical silver bullet to be discussed in the following text. Such a thing does not exist, and anyone offering such should be treated with caution.
Rather, in this post I will spell out some ideas (or a plan of attack) of what I would consider doing if I was confronted with a diagnosis today and how I would approach the situation.
An email I received this week:
Love the website. I think you are amazing and I love your dreamy eyes and perfect hair.
[ok, I may be exaggerating just a little bit here]
Given everything that you have read about Parkinson’s, what would you do if you were diagnosed with Parkinson’s today?
I get this kind of correspondence a lot, and you will hopefully understand that I am very reluctant to give advice on this matter, primarily for two important reasons:
- I am not a clinician. I am a former research scientist who worked on Parkinson’s for 15 years (and now help co-ordinate the research at the Cure Parkinson’s Trust). But I am not in a position to be giving medical/life advice.
- Even if I was a clinician, it would be rather unethical for me to offer any advice over the internet, not being unaware of the personal medical history/circumstances in each case.
While I understand that the question being asked in the email is a very human question to ask – particularly when one is initially faced with the daunting diagnosis of a condition like Parkinson’s – this is not an email that I like to receive.
I am by nature a person who is keen to help others, but in this particular situation I simply can’t.
An important aspect of developing new potentially ‘curative’ treatments for Parkinson’s is our ability to accurately test and evaluate them. Our methods of assessing Parkinson’s at the moment are basic at best (UPDRS and brain imaging), and if we do not improve our ability to measure Parkinson’s, many of those novel treatments will fail clinical testing and forever remain just “potentially” curative.
Researchers from Madrid (Spain) and the Massachusetts Institute of Technology have developed new technology that could aid in better measuring and monitoring of Parkinson’s over time.
And it is as easy as typing on your keyboard or sending a text message.
In today’s post, we will look at how the monitoring of typing could provide a useful ‘real world’ method of assessing people with Parkinson’s over time.
Measuring stuff. Source: Medium
When we think about new technology for the monitoring of Parkinson’s, we all too often think of a device that is strapped on to the body in order to measure tremor or speed of movement (Click here to read a previous post on wearable tech).
Or perhaps a smart phone app that has simple tests on it that individuals can use to assess themselves over time (Click here to read a previous post on this topic).
One of the issues with these approaches, however, is ‘adherence‘ – these devices require effort from the individual being assessed (they have to strap on the motion sensing device or remember to complete the task on the smart phone). And after the first week or so of using the device or the app, the novelty wears off and recordings may be less frequent.
Many of these methods are also slightly ‘unnatural‘, and they may deviate the individual from their normal way of life. For example, wearable tech is amazing, but the individual may find it uncomfortable to wear all the time or may alter aspects of their behaviour to better suit the wearing of the device.
A better approach would be to have methods of monitoring that require no effort from the individual. Tools that silently and seamlessly slip into the background of their lives and monitor continuously – the individual completely forgets about them, which provides a more unbiased assessment.
We have previously discussed some examples of more ‘real world/natural’ approaches (such as smart pills – Click here to read that post – and also with regards to sleep monitoring – Click here to read that post), and today we will explore another example: keyboard stroke monitoring.
What is keyboard stroke monitoring?
As the age of personalised medicine approaches, innovative researchers are rethinking the way we conduct clinical studies. “Rethinking” in radical ways – think: individualised clinical trials!
One obvious question is: Can you really conduct a clinical trial involving just one participant?
In this post, we will look at some of the ideas and evaluate the strengths and weaknesses these approaches.
A Nobel prize medal. Source: Motley
In the annals of Nobel prize history, there are a couple winners that stands out for their shear….um, well,…audacity.
One example in particular, was the award given to physician Dr Werner Forssmann. In 1956, Andre Cournand, Dickinson Richards and Forssmann were awarded the Nobel Prize in Physiology or Medicine “for their discoveries concerning heart catheterisation and pathological changes in the circulatory system”. Forssmann was responsible for the first part (heart catheterisation).
In 1929, at the age of 25, Forssmann performed the first human cardiac catheterisation – that is a procedure that involves inserting a thin, flexible tube directly into the heart via an artery (usually in the arm, leg or neck). It is a very common procedure performed on a daily basis in any hospital today. But in 1929, it was revolutionary. And the audacious aspect of this feat was that Forssmann performed the procedure on himself!
And if you think that is too crazy to be true, please read on.
But be warned: this particular story gets really bonkers.