Winter 2022
Winter 2022
Parkinson’s Research NEEDS YOU
Jim Sheridan
I am a semi-retired physicist, diagnosed with Parkinson’s in December 2010 at the age of 57. I keep myself going with a mix of exercise, self-monitoring and support to research. Part of that support is being a lay reviewer of research bids submitted to Parkinson’s UK. But mostly it’s about active participation. In this article I will tell you why I think you should actively participate in research in whatever way you are able.
Many of us are aware of the phenomenal efforts of Dr Kevin McFarthing, also a person with Parkinson’s (PwP), who produces the Hope List – a list of all the Parkinson's drug development projects, including trials from phase 1 through to phase 3 – covering symptom control, slowing disease progression, and reversing the condition. The Hope List is upated at least twice a hear and you can find the latest version online at bit.ly/ParkinsonsHopeList. We naturally direct our expectations at researchers conducting these trials, in academia, drug companies and hospitals. However, the fulfilment of our hopes is also very dependent on our participation… YOUR participation. Without participants there is no trial… no hope. With too few participants the trial may not be as effective… reduced hope.
Selfishly, my main hope is to be amongst the first people to be able to say “I used to have Parkinson’s”. Similarly, I’m thinking of my family. I am diagnosed as having idiopathic Parkinson’s. But I might have a new genetic mutation that has not yet been identified – and could have been passed on to my children and grandchildren. Naturally, I still hope that my participation also helps you and yours.
It is worth noting that there are also many trials where age matched controls are desperately needed. These include phase 1 drug trials, which are directed at general safety, and non-drug trials aimed at investigating how Parkinson’s symptoms compare to the norm. This could involve a partner or friend.
To find a trial suitable for you, you could ask your consultant or go online to the PUK research hub. In the case of drug trials, I like to get the lowdown on the drug before I commit. Particularly what is already known about it. Many drugs being trialled are what is known as “repurposed” – i.e., existing drugs proven safe for use against other medical conditions – in which case there will be evidence that the drug will have had some benefit to Parkinson’s symptoms. There will also be a known, or conjectured, physiological mechanism that explains how the drug might benefit PwP. In particular, more recently, some drugs are initially being investigated in the laboratory on cell samples provided by PwP and age matched controls.
I like to understand the potential benefits and side effects, how the trial will be conducted, and how I will be monitored. I have already participated in the PD-STAT trial (repurposing of simvastatin, a drug that lowers cholesterol) which ultimately demonstrated no benefit compared to placebo and the ongoing exenatide trial which is repurposing a diabetes drug.
I participate in non-drug studies including the Discovery trial – which uses a range of clinical and laboratory tests to track the progression of a large Parkinson’s cohort over many years – and OxQUIP, which is investigating the use of modern wearable technology for home monitoring. I have also participated in numerous ad hoc trials to investigate physical and cognitive behaviour at universities and online.
Participating and contributing to Parkinson’s research gives me the sense that I have some control over how this awful condition impacts my life. It makes me feel good to be involved and, as a side effect of feeling good, my symptoms improve. Every new trial is a new hope – and I’m as hopeful for trials that I am not on as the ones I am. Plus I have learned more about the disease from talking to researchers ... more about how it is impacting on my own life… and what I can do about it. This is a real bonus when you consider you only get to talk to your consultant for 20 minutes a year. Furthermore, I will go so far as to say that most of the non-drug trials are actually fun. The enthusiasm of the young researchers is contagious. The personal attention that you get is stimulating. They obviously test us physically and cognitively. But, unlike school and university, we can’t fail these tests. The researchers learn something about us and we learn something about ourselves… and often have a bit of a laugh in the process.
The benefits of drug trials can be dramatic. If you are randomised to the active drug, you may be one of the first people with Parkinson’s to derive a real physiological benefit that may improve symptoms and/or change the progression of your disease. Though you should check how the possible side effects might relate to you, and any other conditions you have, and you may be required to attend the occasional clinical appointment in the OFF-medication state. But, even if randomised to the placebo, there is a chance that you might still experience a personal symptomatic benefit, due to the placebo effect. Ultimately, a drug will be approved for clinical use if participants on the active drug show a greater benefit than those on placebo. Generally, the researchers won’t know whether you are on the active drug or placebo (double blind). But you can feel comforted that you will usually continue to take your medication as normal, you’ll be well looked after, well monitored, you can withdraw from the trial at any time, and your data will be anonymous.
In conclusion, for drug trials, whether on the active drug or the placebo, you might benefit directly, but the Parkinson’s community will certainly benefit in the long run. Let’s face it we’re familiar with little steps… but we usually get there. Non-drug trials are an essential element that will ultimately serve to prove that the drugs work… and you may find out more about your own condition.
For current trials in Oxfordshire you can take a look at the NIHR research website and search for Oxfordshire.
Please participate in trials and make your contribution to transforming hope into a cure.