Interview with Neurochemistry Expert turned Patient Advocate Dr. Jon Stamford

Jon Stamford has a double interest in Parkinson’s Disease. As well as leading a research laboratory investigating the neurochemistry of PD for more than a decade, Jon also has young onset PD.

Jon has published three neuroscience books and more than 200 research publications (reviews, papers, abstracts) in an academic career lasting 23 years.

Since his PD diagnosis in 2006 at 49 he has been active in PD advocacy. He was a co-founder of Parkinson’s Movement (2011), and Parkinson’s Inside Out (2014), editor-in-chief of On The Move (2012-2016) and a World Parkinson Congress ambassador (2011-2013). Jon has spoken on PD at academic and patient meetings in Europe, North America and Asia.

As well as being on the editorial boards of Neurodegenerative Disease Management (since 2012) and Journal of Parkinson’s Disease (since 2015) he has written four books about living with PD and blogs about PD at (Source: Parkinson’s Movement)

The following has been paraphrased from an interview with Dr. Jon Stamford on June 6th, 2018.

(Click above to listen to the full audio version or click here for a downloadable version)


What was it that originally drew you to the study of Parkinson’s?

A new technique had just been developed for studying dopamine levels and my PhD supervisor sold it to me as a fantastic chance to be part of a new wave of research. One thing led to another and I became very interested in dopamine’s role in Parkinson’s disease, as well as all the other neurochemicals that play a part in this disease.

When did Parkinson’s begin to be widely accepted as more than just a loss of dopamine?

It always had been known, but people found it inconvenient to realize that there were changes in other neurochemicals as well. The early work of Arvid Carlsson allowed everyone to conceptualize it as strictly a loss of dopamine, other observations were brushed aside. Over time there was a gradual shift as more evidence started coming in.

When you were a researcher, how did you perceive the disease?

I think I perceived it very much as James Parkinson himself did, and in one of the great ironies of life, I studied at the London Hospital Medical College, which is where 200 or so years earlier James Parkinson himself studied and wrote his paper on The Shaking Palsy. I very much saw the disease as the diagram he used, and that most people see, of the increasingly stooped figure with the shuffled walk. My research was very much pre-clinical, I didn’t see patients, the first actual patient I saw was myself.

Did you need a clinical diagnosis or could you figure it out on your own?

Bizarrely, I couldn’t figure it out on my own. I had been teaching Parkinson’s to medical students for years and I couldn’t recognize the symptoms in myself. I attributed the slowness and other symptoms I was experiencing to advancing middle age. I was almost accidentally diagnosed because I had a problem with my shoulder that turned out to be a frozen shoulder, one of the classical symptoms of PD. That along with deteriorating handwriting lead to my diagnosis.

What benefits do you think researchers would derive from more patient engagement?

Let me turn it around and say what detriment they would suffer from not having experience with patients. I think it is a significant handicap. You have to have a sense of context, especially with preclinical research. Without that connection, I think you have to ask yourself why are you doing it? There has to be something beyond the simple thirst for knowledge.

How should the subjective experience of having the disease inform the objective study of the disease?

Making the connection is important, scientists need to be aware of what patients are experiencing. A clinician might know what Parkinson’s looks like, but patients know what it feels like, and I think there is quite a distinction between those two things. It’s easy to describe dystonia (symptom of PD, severe muscle contractions) for instance, but until you have experienced it you really only have a dim picture of it. I believe that more research needs to be led by patients.

How did your diagnosis change your perception of biology?

It trained me to look more closely at details and to not ignore things simply because they didn’t fit. I think there is a tendency in biology to disregard inconvenient observations. Ironically, I became a better scientist after I became a patient.

How much faith do you have in the ability of basic science to solve a problem like Parkinson’s?

I have absolute, unwavering faith. I don’t see any other route. But I don’t think we should channel all funding into primary research, that is a significant part of it and that it where the major leaps are going to come from, but those decisions have to be informed by patient input. Patients have to lead the agenda and be able to say to scientists, ‘these are my priorities and these are the things that need addressing.’ The idea of scientists alone making the decisions about what they perceive to be Parkinson’s is insane. If I think back to who I was before the diagnosis, I wouldn’t trust myself to make those decisions.

How do you see patients actually influencing basic science?

I see them influencing the broader research agenda, but there are a lot of barriers in place stopping that. A few years back I gave a rather flippant answer to this question by saying that we just have to wait for the old dinosaurs in neurology, those who don’t see value in patient engagement, to die off. Thankfully those dinosaurs are being marginalized and slowly but surely there is more patient engagement and input happening, but not nearly enough.


Click here to learn more about Jon Stamford.

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